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    Involving people in the decision making of the NHS

    Ways Forward For Public and Patient Involvement In England 2014

    Practical Approaches To Patient And Public Involvement

    The Briefest Of Summaries Of The Best Ways Forward In PPI For England

    Current policy as outlined in Participation Guidance  is generally good with clear requirements for the system as a whole. However, much more can be done.

    PRINCIPLES:

    • Democratic legitimacy needs to be increased in the NHS. In particular, commissioning and planning for the local and national NHS should increasingly be in the hands of elected people.
    • Perhaps more than democratic accountability, we need participatory accountability. That is, a system that supports, encourages and welcomes communities and individuals being part of the prioritising, planning and monitoring of services as equals and agenda-setters.
    • As part of this process, the NHS needs to develop techniques and approaches for a proactive dialogue with the people it serves, locally and nationally.
    • PPI needs to be integral to all aspects of commissioning and providing
    • Commissioners and providers need to show that they have listened and responded and they need to be monitored on their response
    • We need to include in the discussion both individual involvement (the process of consultation between patient and clinician) and collective involvement (the participation of communities and groups in the planning, development and monitoring of services)

    WHAT NEEDS TO BE DONE TO IMPROVE INDIVIDUAL PARTICIPATION

    • Active care planning
    • Training for clinicians in promoting shared decision-making and self-care
    • Promoting the dissemination and use of
      • Decision Aids
      • Online patient record access
      • Condition-specific patient education programmes
      • Group appointments
      • Coaching and question-prompts for patients
    • Realigning incentives
    • Changing external and legal factors

    WHAT NEEDS TO BE DONE TO IMPROVE COLLECTIVE PARTICIPATION

    • Promote and disseminate the use of community development as a joint process between Clinical Commissioning Groups, Local Authorities, HealthWatch  and Health and Wellbeing Boards
    • GP surgeries to become more responsive to their populations
    • GP surgeries and CCGs to work more closely with local 3rd sector groups
    • Feedback from patients to become increasingly:
      • a key safety lever
      • part of the payment process for providers
      • part of choosing services
    • A strong independent HW
      • ring-fenced funding
      • continuity
      • effective data collection and evidence-based feedback to commissioners
    • More responsive and accountable commissioners, responsiveness monitored by NHS England
      • An increasing focus on communities and patients as experts in identifying local issues and solutions
      • PPI at every stage and every part of the CCG including prioritising, finances, planning, monitoring
      • Patient Participation Groups to collectively advise the CCG
      • Stronger representation on the CCG of councillors and lay people
      • Consider other options for CCGs governance:
        • with Foundation Trust-type arrangements
        • elected representatives
      • Commissioning community development
      • Prioritising individual involvement
    •         A stronger push at national level to share power with patients and citizens
      • NHS England to demonstrate responsiveness in its own commissioning
      • Community development to be promoted by making it easier to jointly commission
      • A shift towards Health and Wellbeing Boardss initially vetting CCG plans, then taking on more of the commissioning responsibilities. Then eventually LAs taking over commissioning with CCGs as key partners.

    WHY IS PPI IMPORTANT?

    See a good summary

    INDIVIDUAL INVOLVEMENT

    This means participation in the consultation between patient and clinician (nurse, GP, hospital doctor, AHP)

    There is moderately good evidence that care and outcomes improve when people are involved in shared decision-making and in self-care. It probably saves money too.

    For the process to be effective, both the patient and the clinician need to be involved in the dialogue and support has to be offered to both. Shared decision making relies on two sources of expertise:

    • The health professional is an expert on the effectiveness, probable benefits and potential harms of treatment options
    • The patient is an expert on herself, her social circumstances, attitudes to illness and risk, values and preferences.

    Both parties must be willing to share information and accept responsibility for joint decision making. The clinician must provide patients with information about the diagnosis and treatment options and the patient must tell the clinician about their preferences

    “A colleague with rheumatoid arthritis likens the experience of living with chronic illness to flying a small plane. If it is flown well, one gets where one wants to go with the exhilaration of mastering a complicated set of challenges. If it is flown badly, one either crashes or lands shakily in the wrong airport,reluctant to ever leave the ground again. The patient must be the pilot, because the other possible pilot, the health care professional, is only in the plane a few hours every year, and this plane rarely touches ground.

    If chronically ill patients must pilot their planes, then the role of health care is to ensure skilled pilots, safe planes, flight plans that safely get the pilots to their destinations, and air traffic control surveillance to prevent mishaps and keep them on course. “

    This implies a substantial shift in clinical activity across the whole of the NHS.

    Practical interventions to make individual involvement routine

    1. Care planning. Not just having a care plan, but an active process of jointly planning care for people with Long Term Conditions. See the House of Care for more details.
    2. Training clinicians in shared decision-making (SDM) and promoting self-care. There is evidence that this changes behaviour, to some extent in the long-term. Unless clinicians alter our approach to the consultation, little will  change. There are quite a few training courses now and lots of work on practicalities by the Health Foundation.
    3. Decision aids for patients need to be available in every Out Patient Department and every GP clinic. Decision aids help to increase patient involvement in decision making and increase patients’ confidence in the process. Some studies suggest they also produce a better match between patients’ preferences and the treatments chosen, leading to increased satisfaction. There is no evidence that they make patients more anxious. Several trials have shown that decision aids can lead to a significant reduction in rates of elective surgery with no adverse effect on patient satisfaction or health outcomes.The best ways of harnessing Decision Aids need to be established, taught and reinforced.
    4. Patient online record access. This is now government policy for it to be available to anyone who asks from April 2015. has been shown to improve relationships, improve patient confidence and understanding and self-reported efficacy, and reduce the demand for appointments and telephone calls to practices. There is some evidence that self-care and compliance is improved. Patient record access needs to be available for every patient across the UK. It is emerging that patients particularly value transactional services that can be linked with record access. These include:
    • reliable information linked with their own record
    • using access to ensure that professionals and family members are informed of all their current treatment and care plans
    • the ability to improve the accuracy of the record
    • the ability (in the future) to add to the record
    • the ability to book appointments and repeat prescriptions electronically through the record.
    • the ability to see how their care management relates to good practice in the field, for instance through links with the Map of Medicine.
    1. Condition-specific patient education programmes such as the Expert Patient Programme have involved people with asthma, diabetes or arthritis. Evidence is reasonable that they make a difference to outcomes and self-confidence to manage.These are programmes for patients. Clinicians may need support and encouragement to offer such groups on a routine basis. In addition, there may need to be support or incentives for clinicians to offer interventions such as asthma self-management on a routine, systematised basis, perhaps on a cluster basis.
    2. Group appointments. These are appointments where groups of patients with the same Long Term Condition (typically diabetes or asthma) are seen together by a clinician. The aim is both to teach people good practice but also to enable patients to learn from each other and for the clinician to learn from the wisdom of the group. Better health outcomes (blood glucose control and blood pressure) are reported for group-based educational approaches for patients with Type 2 diabetes.
    3. Realigning incentives so that professionals are required to involve patients in decision making. In this brave new world clinicians would be monitored for their ability to accomplish this task. Training would be provided in shared decision making and the use of decision aids and patient engagement would be incorporated into clinical guidelines, using patient feedback to check progress. Health professionals and managers would require the use of decision aids to achieve performance targets. Relevant metrics might include the percentage of patients who report having had the opportunity to make informed decisions. Such metrics could be incorporated into accreditation and reimbursement strategies.
    4. External factors and legal requirements, such as the requirement to demonstrate true informed consent (see for example the 2007 legislative changes in Washington State), could also provide a strong incentive to make the shift from traditional paternalistic practice. Those concerned with risk management could benefit from insights derived from research into shared decision making and risk communication. Clinicians are always vulnerable to legal challenge and being able to demonstrate that effective methods have been used to communicate risk may prove to be a useful defence in court cases.
    5. Coaching and question prompts for patients. These have included coaching in how to raise issues and express preferences, question cards that act as prompts on appropriate questions to ask the doctor, encouragement to keep diaries or lists of topics for discussion, and summaries or audiotapes of the main points discussed for the patients to review later.

    As a result of prompts, evidence suggests:

    • improved knowledge and recall.
    • Increased involvement and question asking,
    • Increased perception of control.
    • Prompt sheets more effective than generalised information,
    • Patient focused approaches are more effective than those targeted at health professionals.
    • Mixed results for satisfaction.
    • Length of consultation unchanged, even where question asking increases.

    However,

    • No impact on uptake of ante-natal tests.
    • Mixed results in relation to medication adherence and clinic attendance.
    • Mixed results in relation to treatment outcomes.

    COLLECTIVE INVOLVEMENT

    This refers to the involvement of people collectively influencing the planning and delivery of local or national healthcare services.

    Democratic Accountability

    The Secretary of State is the only elected person in the NHS. As a matter of principle, there needs to be more democratic involvement in the NHS. Critically, planning the NHS should be done with democratic legitimacy. Currently there is a real risk that planning will lend up being done by the private sector as Commissioning Support Units get taken over and gain more power.

    The most obvious way is to involve local authorities more over time.

    The first step would be to give Health and Wellbeing Boards more say and a veto over CCGs’ plans. Increasingly HWBs could take over local planning. Eventually Local Authorities would be in charge.

    Advantages would be:

    • Holistic planning and procurement
    • Probably a stronger focus on the social determinants of health
    • Less duplication

    Disadvantages:

    • Political vagaries interfering with evidence-based planning.

    However, to listen to NHS staff discussing this, you’d think that Local Authorities could never commission or plan anything, hobbled by politics. This is patently not the case. And there is precious little evidence-based planning in the NHS (or anywhere) now.

    Other options include elected Clinical Commissioning Groups, elected Boards for practices, Foundation CCGs, having the same sort of structure as FTs. However, as was found in Scotland, it is unlikely that new democratic structures like this would attract enough voters to be viable.

    Participatory Accountability.

    This is the process that happens to some extent now, with Patient Participation Groups, Health Watch and so on. NHS policy on this kind of participation is pretty good. The demands on CCGs to be transparent and to involve local people in planning are clear in the recent guidance and in the NHS Constitution.

    However, practice on the ground remains poor, but is improving.

    Practical ways of improving participatory accountability.

    1. Community development to become a key approach.
    Community development (CD) enables people to organise and collaborate to:

    • identify their own needs and aspirations
    • take action to exert influence on the decisions which affect their lives
    • improve the quality of their own lives, the communities in which they live, and societies of which they are a part.

    CD aims to address imbalances in power and bring about change founded on social justice, equality and inclusion[i]. It increases community activity at two levels:

    • within the community itself: to increase social networks and productivity – more friendships, less isolation, more volunteering, more mutual aid, more informal care, better flow of information, more trust and co-operation, positive behaviour change;
    • between the community and local services and authorities: better communication, dialogue, feedback, engagement, involvement in service change.

    The process begins by identifying the issues that matter most to those residents who speak up and take action, not by imposing an agenda pre-defined by health or other public service agencies. If the relevant topics are anti-social behaviour, housing or environment, those are the initial priorities for the work. All issues have a health benefit. As social networks expand, most major issues will emerge through one group of residents or another. As communities work together with agencies to solve the problems that matter to them, confidence grows, leaders appear, social capital improves and the benefits to health become apparent. Some impacts are direct, through the effects of participation on individuals; some are indirect, through service change and increase in social trust.

    A resident-led partnership is often the vehicle by which this transformation takes place. This brings together local people with public agencies dealing with health, education, housing, police and other issues, in ways that have often not happened in that area before. As a local resident put it: “It’s no longer them and us – it’s us and us.”

    CD is best carried out through expert community development workers but can be done by other front line service workers if they are trained for it. CD tends to be geographically-based (highlighting the most troubled communities in the area), but there are good examples of work with communities of interest, for instance people with diabetes, or the disabled.

    One strand of CD is broadly known as the ‘asset-based approach’. Whilst medicine traditionally seeks needs and problems to which to respond, asset-based approaches look for the positives: the leaders, the skills, the strengths of individuals and communities, and builds on those.

    2. GP surgeries more responsive to their local  populations

    • Every practice to have a patient participation group or panel.
    • Every practice to work with and collaborate with their local Healthwatch
    • Every practice to introduce easy to use feedback channels and to be responsive to this feedback
    • Practices to involve patients in the recruitment of doctors and other staff
    • The Care Quality Commission to monitor whether practices make changes in response to patients’ views.
    • Quality and Outcome Framework incentives re-introduced to encourage responsiveness, in particular:
      • Quality of care being in part defined by patients
      • Points assigned to responsiveness on areas other than merely access
      • Practices will be encouraged to work with local community development workers

    3. More responsive and accountable commissioning

    • Patients’, citizens, community-based organisations and Healthwatch views to be incorporated into the commissioning process in the following areas:
      • Needs assessment
      • Choosing priorities for investment and disinvestment
      • Monitoring quality
      • Identifying problem areas and successful areas of service provision
      • Determining the shape of service development
      • Deciding on how to spend any savings
      • Patient participation groups link up to advise the CCG
      • Greater involvement of condition specific and community groups in the commissioning process. For instance  through local third sector, voluntary and community organisations
      • Community development workers to be commissioned  in each CCG, jointly with local authorities, through the HWB
        • CCG boards to be elected.  Perhaps along the lines of parent-governors in schools.
        • Participatory budgeting linked with the LA.
        • The CQC to demand evidence that local commissioners and providers have taken on board patients’ views in the areas specified above
        • CCGs’ commissioning plans to be signed off by Health and Wellbeing Board. Eventually, commissioning to be taken over by HWB and later, perhaps, the Local Authority.
        • Local Authority councillors to form half of every Board
        • Pilots to explore CCGs as Foundation Trusts

     4. A stronger push at national level to share power with patients and citizens

    • Ensure HealthWatch England is a representative organisation of Local HealthWatches. That it sit outside the Care Quality Commission. That LHWs be adequately funded with ring-fenced money. That LHW has more powers to change CCGs’ plans than now.
    • Shared decision making and sharing of information, including the sharing with patients of electronic patient records, to be incorporated as key components of training for  health professionals, and led by patients
    • An improved system for eliciting, analysing and responding to patient and user feedback, including a simplified complaints handling system,  a single phone number, and a requirement for NHS bodies to respond via internet platforms
    • Greater emphasis on community development in the agendas of health commissioners, local authorities, local strategic partnerships and HW, as a means of improving public health.
    • HW representatives to be represented on national forums for  the sharing of experience and good practice
    • Continued national support for the deployment of patient reported outcome measures (PROMs) and quality accounts as mechanisms for developing a more patient-centred service.
    •  Investment in HW to support their role of monitoring delivery of the rights guaranteed by the NHS Constitution.
    • Provider pay to be more dependent on patient feedback than now.
    Comments Off on Whose NHS Is It Anyway?

    Within the Osier paradigm, doctors have generally accepted accountability in two directions; to their professional colleagues collectively, and to their patients individually. In each case, accountability has been at two levels: a formal level of official complaint, disciplinary action or litigation; and an informal level of custom and expectations.

    Because in Osier’s time doctors had so little influence on the outcome of illness, accountability for outcome was not possible. Even the traditional Hippocratic rule ‘primum non nocere’ (above all, don’t harm) was not enforceable; desperate fear condoned desperate remedies; so doctors were encouraged to add substantial risks from treatment to the uncertain but often serious risks of illness. The dangers of surgery were obvious, but less well remembered are the often highly toxic medicines in everyday use well into the 1940s. Strychnine, lead, arsenic and mercury were common ingredients of pills, medicines and ointments used for a wide variety of conditions for which no treatment of experimentally proven effect was available. Doses were supposed to be safe, but chronic lead and arsenic poisoning were common in sufferers of multiple sclerosis, motor neurone disease, migraine, trigeminal neuralgia, hysteria and other chronic disorders for which they were often prescribed. When I was a medical student in 1950 ‘pink disease’, an often fatal disorder of infants, was proved (after prolonged and acrimonious controversy in the medical journals) to be chronic mercury poisoning from teething powders, prescribed by doctors or bought over the counter from chemists.

    When the Osier paradigm was developed, transactions between doctors and patients were largely illusory. Then as now, they were seldom consciously deceptive. The chief therapeutic agent, and the chief product of a medical con­sultation, was hope, and doctors and patients collaborated more or less equally in producing and sustaining it. There was a tacit social agreement that the alleged centre of the medical process (attempts to alter the course of illness) could not be subjected to serious direct criticism, because then there would soon be no profession left to criticize. Credulity was an important part of the medical process, valued by patients as much as by doctors, and this was the principal justification for the very tight definition of medical privilege and exclusion of competing skills. Instead, criticism was focused on the medical process rather than its outcome. The most dependable defence was strict adherence to conventional process, not only clinical process but also the ways in which doctors dressed, spoke and behaved. Outrageous social behaviour and barefaced fraud were the main targets; not what doctors did, but how they did it.

    This refusal to look objectively at the clinical centre of medical failure and success, at the overall gains or losses in long-term health and happiness, is still with us. Despite massive evidence that effective medical knowledge is very incompletely applied, this hardly figures in the personal accountability of doctors for their daily work. Instead, we maintain systems for chasing exceptional offenders accused of exceptional crimes, while leaving the effectiveness of our daily work unmeasured and largely unknown.

    Accountability to Professional Bodies and Administration

    Professional accountability in Britain is to the General Medical Council (GMC), representing a mixture of lay and professional establishment opinion, with its own disciplinary powers to suspend or expel doctors from their profession, outside the ordinary legal system. Similar European bodies, like the Ordre des Medecins in France and Belgium, combine these powers with representation of the real or imagined interests of doctors in negotiation with the State, reinforcing the power of established doctors to restrict social innovation within the profession. In Britain this negotiating function has always been carried out by the BMA, distantly flanked by the minuscule MPU, without disciplinary powers or compulsory membership.

    In 1983, 920 doctors out of about 60,000 in all forms of practice were reported to the GMC for suspected misconduct. Only 40 of these were ultimately referred to the Professional Conduct Committee. The most that can be said for the GMC is that it sets an outer limit to professional negligence or incompetence, but this is so remote from everyday success or failure that it is of little interest to doctors concerned (as the vast majority are) with the effectiveness of ordinary care.

    Formal complaints by patients about doctors either in hospitals or general practice are infrequent. The Royal Commission on the NHS  ( para. 11.12. Cmnd 7615, London: HMSO, 1979.) recorded that of about 200 million patient contacts with GPs in 1978, only 1,465 led to formal complaints to Family Practitioner Committees. Complaints about doctors in hospitals were more frequent, but of six million in-patient treatments and nine million new out­patients in that year, less than 1% led to written complaints. In 1983 there were about 19,600 written complaints about hospital care, about one in 2,000 episodes of treatment. (Capstick,   B.,   Patient   complaints   and   litigation,   Birmingham: National Association of Health Authorities in England & Wales, 1985.) Less than half of these were complaints about clinical management.

    The NHS remains a popular service, and those who work in it are still generally well thought of. However, in a retro­spective analysis of 500 consecutive deaths in my own practice from 1964 to 1985, I was able to identify avoidable factors in 45%, of which 59% seemed mainly attributable to the acts and omissions of patients, 20% to misjudgements by myself and my GP colleagues, and 4% to misjudgements and errors by hospital doctors, though it was difficult to get as much information about the last category as I had about myself and my colleagues.  (Hart, J.T., Humphreys, C., ‘Be your own coroner: an audit of 500 consecutive deaths in a general practice’, British Medical Journal 1987; 294:871-4.) I have no reason to believe these figures are unusual, so evidently few events deserving (hope­fully constructive) criticism lead to any formal complaint. I do not, of course, suggest that they should, but a mature science should be founded on self-criticism and mutual criticism, in which doubt rather than faith is the accepted norm, not in order to pillory malpractice, but to advance the practice of scientific medicine. Our existing machinery of criticism is almost entirely irrelevant to this aim, and lags far behind the real moral position already attained by most doctors.

    In hospitals, where doctors are salaried and their work is at least nominally co-ordinated within teams and between specialties, NHS administration has in practice little to do with maintaining standards of medical care, except in this negative and exceptional sense of fielding complaints. Even then, accountability of consultants is unconvincing. In an editorial in the British Medical Journal, (Drife,  J.O., ‘Consultant accountability’, British Medical Journal 1987; 294:789-80.)  a teaching hospital consultant has described and explained the problem:

    In hospitals administrative staff are accountable to general managers and nurses to the District Nursing Officer, but the accountability of doctors is not clear. Hospital doctors in training are answerable to their superiors, but after being appointed consultant. . . a doctor has a secure job and does not appear to be accountable for the quantity or the quality of his work.

    There are several reasons for this. One is historical: years ago consultants gave their services free to charitable institutions, which could hardly complain when the consultant was not in constant attendance. The influence of this tradition persists, and some consultants still think that their main clinical job is simply to be available for consultation to junior staff. Another reason is that consultants—unlike senior nurses—have a mixture of clinical and administrative responsibilities, which are closely interlinked. It is difficult for an employer to make a consultant accountable for administration while deferring to him on clinical matters, and the question of clinical accountability is a sensitive one.

    Even more in general practice than in hospitals, most complaints concern style rather than clinical management, probably because in this area patients have more confidence in their own judgements. Klein (Klein,  R.,  Complaints against doctors, London: Charles Knight, 1973.)   reviewed complaints to Family Practitioner Committees (FPCs) in 1973. Nearly 35% were about GPs’ or their receptionists’ manners and remarks, 22% were about delays in visiting or problems about appointments and only 11% were about diagnosis or treat­ment. He noted that whereas doctors seemed mainly to fear and organize to defend themselves against accusations of clinical incompetence, patients actually complained mainly about how GPs, hospital doctors and their office and nursing staffs treated them as people, though they may rightly have believed that rudeness and secrecy may have serious clinical consequences.

    Litigation

    Litigation by patients and their relatives for medical mal­practice, though rising, remains uncommon in the NHS. An estimate for 1983 was that only about 5% of formal complaints resulted in writs for damages, of which 30-40% were successful. (Capstick, B., Patient complaints and litigation,   Birmingham: National Association of Health Authorities in England & Wales, 1985.)  This is in striking contrast with the USA, where in 1986 18.3 claims were made for every 100 insured physicians, and sums awarded in compensation were vastly greater than in Britain. The reasons for these differences are complex. In a careful analysis, Quam, Dingwall and Fenn (Quam, L., Dingwall, R., Fenn, P., ‘Medical malpractice in perspect­ive. I. The American experience. II. The implications for Britain’, British Medical Journal 1987; 294:1529-32, 1597-1600.) pointed out that:

    In principle the National Health Service seems likely to reduce claims in at least four ways: there is no direct cost to the patient for extra medical care to remedy an injury; access to care is guaranteed throughout life; there is no direct financial relation between doctors and patients; and the system of referral restrains specialists while encouraging loyalty between patients and their general practitioners.

    However, they go on to warn that all these supportive features could be lost.

    . . . unless the level of National Health Service resources is seen to be adequate to ensure reasonable access and treatment, so that there is no need to litigate for funds to purchase care…

    and that:

    The present constraints on National Health Service funding may by their pressure on medical personnel, also precipitate an increase in the number of incidents capable of leading to claims. . . Fatigue is not a legal defence against an allegation of negligence. Similarly, if junior doctors take on work beyond their level of skill and experience they cannot rely on this as a defence. There is only one legal standard of care: if a doctor is not sufficiently experienced to perform a particular procedure he or she should not undertake the work. Obviously, it is difficult to insist on this when faced with pressing clinical needs, but then the risk of litigation must be evaluated as a cost of a system which requires young doctors to work long hours with limited senior cover.

    Whether lawyers accept it or not there are different clinical standards in general practice (particularly industrial working-class practice) on the one hand, and in hospitals on the other, and many GPs as well as young doctors in hospitals work long hours isolated from peer criticism. All evidence suggests that the relative immunity from formal complaint and litigation of British doctors, and particularly of British GPs, has depended on the gratitude and loyalty of the public and its low expectations in a free but always overworked and underfunded State service. Recent evidence from the Social and Community Planning Research (SCRP) surveys (Jowell, R., Airey, C., British social attitudes: the 1987 report, Aldershot: Gower Publishing, 1987.)   on public satisfaction with the NHS, shown in Table 7.1, gives no ground for complacency.

    Table 7.1    Public satisfaction with the NHS

    Survey year: 1983 1984 1986
    Very satisfied

    11%

    11%

    6%

    Quite satisfied

    44%

    40%

    34%

    Neither satisfied nor dissatisfied

    20%

    19%

    19%

    Quite dissatisfied

    18%

    19%

    23%

    Very dissatisfied

    7%

    11%

    16%

    In the same study, dissatisfaction (quite or very dis­satisfied) in 1983 (Jowell,  R.,  Airey,  C., British social attitudes: the 1984 report, Aldershot: Gower Publishing, 1984.)  rose from 21% of those with annual incomes under £5,000 to 34% of those with incomes over £10,000; 13% of all respondents were dissatisfied with the GP service, compared with 7% for hospital in-patient services and 21% for hospital out-patient services. Patients, particular­ly younger and richer patients, are becoming more critical, and possibly more litigious.

    Accountability to Colleagues

    More perhaps than anything else, medical students learn to respect clinical competence, a term frequently used by doctors but difficult to define. In the sense in which it is usually understood, it need not include several features essential to effective medical care. We all understand what is meant by describing a doctor as clinically competent, but so rude and unsympathetic to patients that this competence cannot be effectively expressed. Competence always includes knowledge of the biological aspects of disease, and the technical means of dealing with it, but understanding of people, even as necessary vehicles for disease, is a desirable but not essential extra.

    Clinical competence is the currency in which all kinds of intraprofessional negotiations and conflicts are conducted. A woman doctor in the USA quoted by Good (Good, M. J.D.,  ‘Discourses on physician competence’.  In, Hahn, R.A., Gaines, A.D. (eds.), Physicians of Western medicine, 247-67. Boston, Mass.: D. Reidel Publishing, 1985.)  expresses this idea of currency very perceptively:

    I think for a long time I tried to increase my competence, or my vision of myself as competent, or other people’s visions of me as competent, at the expense of other physicians’ competence. I think that’s what a lot of doctors do. It’s like there is only so much competence in this world. If I have more, they have less; if they have more, I have less.

    Clinical competence, in other words, is like other kinds of wealth and power. There must be winners and losers; we all love winners, nobody likes losers. Forget about our profession as a band of brothers and sisters in service to mankind, it’s just another part of the universal war of every man against every man. Incompetent doctors are, like incompetent patients, simply rubbished.

    In this view medicine is predatory, and the most successful doctors can be judged only by others who have shed blood in the same way. In 1984 Dr David Kinzer (Kinzer, D.M., ‘Physicians as fighter pilots’, New England Journal of Medicine 1984; 311:206.)  reiterated an opinion he first published in 1959, that the needs of physicians are best understood as resembling fighter pilots in the Second World War:

    Relating to my combat experience flying dive bombers and fighter planes, the success or failure of our performance was measured in one-to-one situations. No dive-bombing run on an enemy ship or dogfight with an enemy plane was like any other. It was always a very lonely experience. The carrier we took off from and, we hoped, would land back upon was always, during these moments, a remote and almost irrelevant entity. . . An explicit reality here is that the missions of the pilot and the carrier were not the same, nor are the missions of the hospital and the clinicians on its medical staff. This distinction is important. The carrier (or the hospital) is an organiza­tion whose only reason for being is to provide a support system for the missions of its pilots (or physicians). Whether the mission is a dogfight or a critical trauma case, it is still the prime responsibility of the pilot or the attending physician. The organization, with its technical hardware, supply system, and support personnel, has only a backup role.

    This view is typical of the way in which junior hospital doctors see themselves and their work. Mizrahi and colleagues (Mizrahi, T., ‘Managing medical mistakes: ideology, insularity and accountability among internists-in-training’,  Social   Science   & Medicine 1984; 19:135-46.)  studied 207 US hospital internists in residency training over a period of three years, using questionnaires and in-depth interviews to study their attitudes to account­ability. Here are some typical statements, which could equally be heard from equivalent British resident staff:

    As time goes on you don’t criticise as much because you know that you may have made the same mistake in the past. On the other hand you realise that you’re not going to change people if you criticise them. All you’re going to do is make them angry at you.

    I remember my first patient who died that I felt in some way respon­sible. . . If I had done something differently maybe it would have made a difference. As a third year medical student, the patient had a bloody stool and my intern told me he was a ‘crock’ and not to be concerned.

    Practically the first week I was on as a third year medical student, the chief resident told me a particular patient was a ‘SHPOS’ [Sub-Human Piece Of Shit]. I was there alone that night when he decided to crump [die]-. . . If I hadn’t been told he was SHPOS I might have gotten on the situation sooner.

    I can’t say I have a whole lot of allegiance to anyone. I’m pretty much a loner. I feel accountable to myself and I feel accountable to try to do the best I can for the people I’m taking care of.

    I’m accountable to me. Because it’s my job and I have chosen to do this to the best of my ability.

    Mizrahi found that these completely doctor-centred views of accountability failed to convince even the doctors themselves:

    Notwithstanding this shared elaborate repertoire of denial, dis­counting and distancing, it was found that profound doubts and even guilt remained for many housestaff. . For many the case was never closed, even as they terminated formal training… The house-staff ultimately sees itself as the sole arbiter of mistakes and their adjudication. Housestaffers come to feel that nobody can judge them or their decisions, least of all their patients. . . They have developed a strong ideology justifying their jealously guarded autonomy. In the graduate medical socialisation process, they have learned to believe that because they perceive themselves as their own worst judges, they should be their only judges. Because of the insularity and isolation of the housestaff subculture in a position of high prestige, with the power to make life and death decisions, they see themselves as singularly responsible for their actions and disparage any attempt by others to insert themselves into the process of accountability.

    Kinzer and Mizrahi’s junior hospital doctors are talking about the USA, but what they say is easily recognized by doctors everywhere; the Osier paradigm of socially isolated, gentlemanly privilege is international. From their first day in medical school, doctors learn to see themselves as hunters, who know diseases as beasts in the jungle, and can shoot from the hip, hopefully hitting the disease more often than the patient, but accepting that hunting accidents are in the nature of the game and are bound to happen. It may be dangerous for patients, but it’s also dangerous for doctors. In a study of 170 junior house officers in British Hospitals, Jenny Firth-Cozens (Firth-Cozens,   J.,   ‘Emotional distress in junior house officers’, British Medical Journal 1987; 29:533-6.)  found that 50% reported emotional disturbance arising from stress, mostly overwork and loss of sleep. 28% showed evidence of depression on psychiatric criteria, 19% drank alcohol heavily and 6% had suicidal thoughts. The study was prompted by two deaths from   suicide in junior house officers.

    Apart from crisis situations, the fantasy of doctors living dangerously as hunters, rescuing helpless and ignorant patients from attack by predatory diseases which doctors alone can recognize and understand, is an absurdity; but it is ideally designed for a service which abandons caring to concentrate on salvage.

    The Patient’s Role in Diagnosis

    Conan Doyle, a good middling doctor unable to make a living in Osier’s time, modelled Sherlock Holmes on an impressive teacher at his own medical school. Holmes was a stunning solo performer, creating a convincing diagnosis from whisps of this and crumbs of that, evidence available to the slower minds of his witnesses and to Dr Watson, but transformed by the great detective into creations entirely his own.

    How Conan Doyle’s ideal managed to stage his apparently convincing performances only medical students familiar with the theatre of teaching consultancy can know. For most performers, some prior investigation and several rehearsals are necessary, with a spotlight blinding the captive audience to the equally essential contributions of the patient, nurses and junior medical staff. The solo consultant who can produce a dazzling diagnosis while making everyone else look a fool is as much a fictional character as Sherlock Holmes himself.

    Consultation of a patient with a doctor for a newly presented complaint usually consists firstly of a diagnostic process (‘What’s wrong with this patient?’), then of a plan for treatment (‘What can be done to put it right?’). Objective studies of both these parts of a consultation show that patients as well as doctors must make active contributions of their own, if diagnosis is to be relevant to the patient’s problems and treatment is to be effective.

    The diagnostic process usually has three stages: a history (what the patient says, mainly in response to a more or less systematic interrogation); physical examination; and laboratory, x-ray or other technical investigations. A group in Oxford (Hampton, J.R., Harrison, M.J.G., Mitchell, J.R.A., Prichard, J.S., Seymour, C., ‘Relative contributions of history-taking, physical   examination  and   laboratory   investigation  to   diagnosis and management of medical outpatients’, British Medical Journal 1975;irA86-9.)  studied the relative importance of each of these to diagnosis by getting consultants to make a provisional diagnosis successively at each stage (after the history, after examination and finally after routine technical tests), and then comparing the proportion who reached the final diagnosis (made retrospectively at follow-up three months later) at each point. In 80 newly-referred medical out­patients, the final diagnosis was reached after reading the GP’s letter and taking the history in 66 (82%); physical examination added 6 (7%) and technical investigations added 7 (9%). Listening to the patient is not only more productive than these other more technical and perhaps more impressive processes, but is also essential to guide them in an intelligent direction; experienced doctors already have one or more hypotheses before they examine their patients to confirm or refute them, and their choice of technical tests similarly depends on hypotheses generated chiefly by the history.

    ‘Listen to the patient,’ said the great French 19th Century neurologist Jean-Martin Charcot, ‘he is telling you the diagnosis.’ Of course, patients cannot usually give a relevant history unaided, but the huge importance of their active, intelligent contribution only becomes obvious when because of cultural or language barriers, no history is available. Diagnosis and subsequent medical management then become veterinary rather than human, crude mechanistic inter­ventions of value only in crises, when the patient’s role always tends to become passive.

    It is doubtful whether Charcot fully understood the truth of his own aphorism. He is said to have refused ever to examine patients in a public teaching hospital unless they were stripped naked; only then, with a patient dumb with fear and shame before a hundred or more students, would he condescend to proceed with his examination. The social assumptions of Osier’s time made this conduct normal; sick people having free treatment in teaching hospitals were expected to speak only when spoken to, answering ‘yes’ or ‘no’ to cross-examination by the doctor, venturing no opinions of their own. Even when I was a clinical student in 1948-52 little of this had changed. Patients today are probably less willing to submit to such arrogance, but the problem is still recognizably there. Useful diagnosis is not just professional recognition of a biological process incompre­hensible to the laity, but a useful analysis of interdependent problems which always (not sometimes) have multiple biological, psychological and social causes, all of which must be understood if we are to find effective solutions. To the extent that patients are discouraged from sharing in the definition of their medical problems, diagnoses will be made which are irrelevant to real lives, however biologically true they may appear to be.

    A Clinical Example

    As the antithesis of swashbuckling episodic battles with acute or end-stage disease, let me give an example of the sort of case where years, even decades of work are required, with less dramatic but probably more important results.

    I have been responsible for primary medical care for Hopkin Morgan (the name is, of course, fictitious) since 1961, when I was 34 and he was 36. He’s a big man, a big soccer player in his youth, and a big coal miner who rarely missed a shift until a runaway tram gave him a compound fracture in one leg in 1964, and killed the man working beside him. A routine medical examination in 1960 had shown a blood pressure of 194/126 mmHg, but when this was repeated a couple of weeks later it had fallen to 168/94, still well into the top 1% of the distribution of blood pressure for a man of that age, but not high enough to justify treat­ment with the antihypertensive drugs available at that time. His blood pressure was not checked again until 1966, when two readings reached 200/120 and 170/120. He has at least nominally been on treatment with antihypertensive drugs ever since, and Fig. 7.1 shows in very simplified form what has happened since then to his weight and blood pressure, in relation to some other events.

    Until his compound fracture he had no apparent medical problems. As there is no record of his blood pressure before 1960, there is no way of knowing how long it had been raised, but it was first recognized as a medical problem in 1966, though it was not causing symptoms. Evaluating his other risks for coronary heart disease, I found a blood cholesterol of 8.2 mmol/1 (318 mg/dl), a figure almost as exceptionally high as his blood pressure. The only good news was that he was a lifelong non-smoker. I also found persistent protein in his urine, suggesting some sort of kidney damage which might be causing his high blood pressure, so I referred him for investigation at a teaching hospital in 1967.

    There he was found to have kidney damage from a raised level of blood uric acid, which can also cause kidney stones and gout (painful uric acid crystals in a joint, usually the big toe), though he did not yet have either of these. His kidney damage was severe enough to cause raised levels of metabolites excreted through the kidney, with blood urea concentrations averaging 52 mmol/1 (313 mg/dl). He was very overweight: six feet tall and weighing 103.4 kg. Like most miners, he was also a heavy beer drinker, getting through about 5 gallons a week according to his own probably modest estimate. Finally they confirmed an even higher blood cholesterol level of 9.5 mmol/1 (373 mg/dl).

    In 1967 he therefore had the following inter-related medical and medicosocial problems, shown as reversible and for the most part measurable risk factors, together with their likely outcomes:

    CURRENT PROBLEMS :                                                                             PREDICTABLE OUTCOMES

    Persistent   disability   from major compound fracture:   Employment problems and loss of earnings

    Very   high   blood   pressure 200/120 mmHg:      Early coronary heart disease, heart failure, and/or stroke

    Very high blood cholesterol 9.5 mmol

    High blood uric acid :   Kidney stones and kidney damage potentially leading to kidney failure, joint damage from gout

    High alcohol intake:   Social damage at home and at work, obesity, further rise in blood pressure, further rise in blood uric acid

    Obesity:  Greater pain from old fracture, further rise in blood pressure, more joint damage, possibly diabetes

    It is interesting to note how many of these outcomes were also potential causes, suggesting that early efforts put into control (Anticipatory Care) might yield disproportionately high dividends. His medical needs, his and my joint medical tasks, were optimal control of these risks to minimize or avoid these outcomes. He has now reached 62 years of age without angina, a heart attack, heart failure or stroke, and he has never had any important psychosocial problems from his heavy drinking. He has always had a strong, friendly personality, and his level of drinking, though a serious health hazard, is a cultural norm in a coal-mining community. His liver function, initially impaired (gamma glutamyl) transferase 250 units, about 200 units above the conventional upper limit) is now virtually normal (59 units). He did get repeated attacks of urate kidney stones in 1969 and 1970, but none since then, and his kidney function has been well preserved (blood urea in 1986 was 11.4 mmol/1).

    On the other hand, his employment and other social problems were serious. After about a year off from his injury, no light work was available and he had to do heavy manual work in the coal washery which gave him a lot of severe pain. In 1970 his wife began to be seriously handicapped by chronic obstructive airways disease and emphysema, with three short admissions to hospital over the next five years. Eventually she became dependent on portable oxygen, and Hopkin gave up his work to look after her at home. She died in 1975. As you can see from Fig. 7.1, weight control was poor and in 1980 he developed diabetes, bringing a new set of risks of coronary heart damage, stroke, kidney damage, and eye damage. His diabetes has been well controlled on diet only, with glycosylated haemoglobin consistently below 9%.

    Fig 7.1

    Fig 7.1

    Quality of blood pressure control was poor; his target pressures of 160/90 mmHg were rarely achieved. There were serious problems of non-compliance with medication, at first because he didn’t understand the importance of good control and because I didn’t understand his antipathy to taking many different tablets. At one point in his wife’s long illness both he and she were suicidally depressed. There are many more important things in life than control of blood pressure or compliance with doctors. Like many patients, he tried to simplify his medication, with predictably bad results; but using other ideas of his own, he set up a rigorous exercise programme, walking five or ten miles a day over the mountains with his dog, which probably contributed a lot to his generally favourable outcome.

    Overall, the story is a success. It’s hard to find any point in it with scope for fighter pilots, or where I might not have done better if I had listened more to the patient, or perhaps if he had listened more to me. If there were any fighter pilots around, they were probably on the orthopaedic team which mended his fracture, though I doubt if this is the way the best orthopaedic surgeons view their work. For the staff at our health centre it was a steady unglamorous slog through a total of 310 consulta­tions. For me it was about 41 hours of work with the patient, initially face to face, gradually shifting to side by side. Professionally, the most satisfying and exciting things have been the events which have not happened: no strokes, no coronary heart attacks, no complications of diabetes, no kidney failure with dialysis or transplant. This is the real stuff of primary medical care.

    The Patient’s Role in Treatment

    Patients share in implementing treatment even more obviously than in diagnosis. No tablets work if they are put in the toilet instead of the patient. Hospital doctors dealing mainly with in-patients sometimes seem to imagine that whatever they prescribe will be taken, because a hierarchy of nurses will wake patients up every four hours and compel them to do so. I once had to sort out the problems of an old man of 75 discharged from a London teaching hospital whose daily medication consisted of nine different drugs administered at six different times, totalling 28 tablets a day. GPs have to face the fact that patients will seldom take medication for more than a few days, unless it obviously and immediately relieves symptoms, or they have been fully convinced of their need for continued medication to maintain health. Fortunate­ly, blind obedience is now a rare though still dangerous disease.

    Studies of patients’ compliance with medication as prescribed show big differences between various age-groups, populations and care systems, but the problem is usually substantial. Studies in the USA have shown compliance rates of 41-54% for long-term medication of chronic conditions such as diabetes, heart failure and schizophrenia. (‘Keep on taking the tablets: a review of the problem of patient non-compliance’, OHE Briefing no. 21, London: Office of Health Economics, 1983.)

    Also in USA, 50% of people found to have high blood pressure fail even to enter the treatment and follow-up pipe­line, another 50% drop out of care within the first year, and over 30% of those who remain fail to take enough medication to control pressure; (Sackett, D.L., Snow, J.S., ‘The magnitude of compliance and non-compliance’.  In, Compliance in health care, ed.  Haynes, R.B., Taylor, D.W., Sackett, D.L., p. 11. Johns Hopkins University Press, Baltimore, 1979.)  the Rule of Halves again. Finnerty (Finnerty, F.A. Jr., Mattie E.G., Finnerty, F.A., ‘Hypertension in the inner city. I. Analysis of drop-outs’, Circulation 1973; 47:73.) studied dropouts from a US inner-city outpatient clinic for high blood pressure. He reduced the annual drop-out rate from 42% to less than 4% in two years, with 85% of blood pressures controlled, and later confirmed similar effects with a randomized controlled trial, (Finnerty, F.A. Jr., Shaw, L.W., Himmelsbach, C.K., ‘Hypertension in the inner city: II. Detection and follow-up’, Circulation 1973; 47:76-8.)  so his conclusions are worth listening to:

    We rapidly learned that patients dropped out not because they were uneducated or did not care about their health, and not because they could not afford the medication. Rather, they abandoned the clinic because they were treated like cattle, herded from one room to another, left waiting for hours, then examined by a different doctor on each visit, leaving no opportunity to develop any kind of relationship. . . The average waiting time for the doctor was 2.5 hours, and the average waiting time for drugs at the pharmacy was another 1.8 hours. . . In contrast. . . the average time actually spent with the physician was only 7.5 minutes.

    Finnerty’s solution was to reorganize the clinic by develop­ing an effective appointments system (average time spent by patients in the clinic fell from 4 hours to 20 minutes), and by ensuring continuity of staff-patient relationships. This turned out to be more important than staff qualification:

    Most important was the assignment of every patient to his or her own paramedic whom he would see on every visit. The paramedics frequently came from the same neighbourhood as the patient.. . chosen not so much because of [their] prior experience or education but because of [their] friendly and sympathetic personality and ability to identify with the patients.

    Perfunctory care has perfunctory results. If we want patients to take their treatment seriously, doctors must show that they take it seriously too, which means negotiating agreement on a plan of management. This must include education of patients in the reasons for, and the advantages and disadvantages of treatments recommended and of other options if there are any, and education of doctors on the real-life constraints within which patients have to apply their remedies. Where doctors develop a continuing relationship with patients, listen to them, and encourage them to share in devising realistic treatment plans, patient compliance can be excellent. Studying their own patients in general practice, Porter (Porter, A.M.W., ‘Drug defaulting in general practice’, Journal of the Royal College of General Practitioners 1969; 17:170.)  in 1969 and Drury (Drury, V.W.M., Wade, O.L., Woolf, E., ‘Following advice in general practice’, Journal of the Royal College of General Practitioners 1976; 26:712-8.)  in 1976 found medication compliance rates of over 80%. Ettlinger and Freeman (Ettlinger, P.R.A., Freeman, G.K., ‘General practice compliance study: is it worth being a personal doctor?’, British Medical Journal 1981; 282:1192-4.) likewise found over 80% compliance overall, and 91% compliance in patients who felt that they knew the doctor who prescribed the tablets well, compared with 44% in patients who did not.

    How Doctors see Patients as a Resource

    Doctors who still operate within the Osier paradigm neverthe­less concede that patients are generally under-used as sources of information, that someone (perhaps some sort of attached  social worker) should find out more about their social circumstances so as to avoid the more nonsensical conse­quences of treating diseases rather than people, and that the necessary education of patients in the nature of their treat­ment should involve at least an appearance of listening to their opinions; but all these are still seen as add-on, luxury features, subordinate to a general scheme in which doctors must be active and well-informed, but patients may be and usually are passive and ignorant.

    Most doctors believe there are big differences in intelligence between patients, that this limits the information patients can accept and recall, and that experienced doctors are able to discriminate between patients who can make good use of discussion of their problems at a reasonably adult level, and those on whom such efforts are wasted.

    There is some evidence on how these beliefs work out in practice. Joyce and co-workers (Joyce, C.R.B., Caple, G., Mason, M., Reynolds, E., Mathews, J.A., ‘Quantitative study of doctor-patient communication’, Quarterly Journal of Medicine 1969; ns 38:183-94.)  studied 54 patients attend­ing a hospital clinic for rheumatoid arthritis and similar disorders, complaints for which communication (listening and explaining) are often the main help available. Among other things, the doctors rated the patients as more or less articulate. They found that patients rated as more articulate were told more about their condition, and told it more often, than those rated as less articulate, though the proportion of information they retained and understood was the same. In other words, the doctors thought they could identify the better learners, and then gave them more information, though logically one would imagine that slow learners need more rather than less teaching time; retention of the information was not better in those rated by the doctors as more articulate. All doctors I have discussed this with agree that all of us at least initially had this attitude; we may have learned it from schoolteachers, who also traditionally give most attention to their aptest pupils, also believe they can predict learning capacity, and are also frequently proved wrong by rapid progress in many pupils once they have left school.

    Similarly, doctors tend to think they can predict compliance. They are wrong; studies have shown that apart from extremes of age, no sociodemographic variables are consistently associated with either compliance or non-compliance. (Menard, J., Degoulet, P., Hong, A.V. et al., ‘Compliance in hyper­ tension care’. In, Mild hypertension: recent advances, ed. Gross, F.,Strasser, T., p. 349. New York: Raven Press, 1983.), (Haynes, R.B., ‘A critical review of the determinants of patient compliance with  therapeutic regimens’.   In  Compliance with therapeutic regimens, ed.   Sackett,   D.L., Haynes, R.B.,   p. 26. Baltimore: Johns Hopkins University Press, 1977.)   Doctors are poor predictors of patient behaviour. French physicians who tried to predict who would continue and who would lapse treatment with digitalis and diuretic tablets for heart failure were wrong in 50% of cases, suggesting that their forecasts were no better than random choices(Mushlin, A.I., Appel, F.A., ‘Diagnosing patient non-compliance’, Archives of Internal Medicine 1977; 137:318.).

    Are Doctors Interested in what Patients know and think?

    Influenced particularly by Balint’s modification of the Osier paradigm, which appears to emphasize patients’ own perceptions of their problems, progressive GPs since the 1970s have been confident that they are moving rapidly towards a more shared, less unequal relationship with their patients, both in defining medical problems and in devising solutions, which should ensure at least an informal level of accountability to patients which might be more effective than a formal structure.

    Careful work by David Tuckett (Tuckett, D., Boulton, M., Olson, C., Williams, A., Meetings between experts:  an approach to sharing ideas in medical consultations, London: Tavistock Publications, 1985.)  and his group has shown conclusively that this is not so. Little if any change has in fact taken place in the overt behaviour of doctors, whether or not they believe such a change to be desirable. Their aim was to explore the extent to which ideas can be shared in medical consultations, because of general agreement by progressive GPs that giving information is often the only available help in a consultation; because patients need information to follow advice and assist them in making difficult choices; because many patients already act as experts in their own self-care (e.g. people with diabetes, asthma, epilepsy, multiple sclerosis) and more should do so; and because patients should be regarded as individuals who interpret and try to make sense of what happens to them.

    Their study material was 1,302 tape-recorded consultations by two groups of GPs. The first was a study group of eight, selected because they were recognized trainers responsible for teaching consultation skills, who had attended lengthy RCGP courses in the Balint tradition, deliberately aimed at changing doctors’ behaviour. Some of these GPs had conducted and published research and others had senior university teaching appointments. The comparison group consisted of another eight GPs chosen randomly from lists of NHS GPs in the same areas as the study group. Very detailed studies were made of a random sample of 69 consultations, and of another 405 consultations selected because they included problems likely to require sharing of information.

    Their original intention was to look at expected differences in the way these two groups of GPs (one theoretically convinced of the need for mutually shared information, the other with traditional ideas of active doctors and passive patients) actually behaved. In fact there were virtually no differences. All the doctors in both groups appeared in practice to see transmission of information and ideas as an almost entirely one-way process, and none of them sought patients’ ideas about how their problems were caused or defined, or how they might be remedied.

    This uniformity of behaviour, despite real differences in attitude and intention which have seriously divided GPs for many years, suggests that virtually all doctors are in fact working within constraints of which they are as yet scarcely conscious (the Osier paradigm). Patients, however assertive they may normally be, also accept these constraints within consultation, so that their own information and intelligence is not used.

    Many people will regard this as a rather trivial discovery, hardly warranting the £250,000 of Health Education Council money it consumed. It has long been fashionable to attribute most problems in medical care to the arrogance of doctors and their refusal to share power with the public they serve, in fact this is a central point of the Liberal Critique. Tuckett’s group agrees, but modifies this in critically important ways which make it constructive and helpful rather than divisive and defeatist in its effect:

    The pattern of consultation we have observed. . . may, in part, be the product of more or less conscious attempts to maintain hierarchical relationships. But these in turn may result from still more fundamental causes. Virtually all of the doctors whom we studied and with whom we later worked gave us the impression that they were very devoted to the welfare of their patients. In recent years medical practitioners, especially in the UK, have devoted an enormous amount of time and effort to self-evaluation and self-criticism. Many doctors also spend a great deal of time voluntarily trying to improve their skills. . . The need to maintain or create hierarchical relationships can. be caused by other factors than the pursuit of power. For example, the innate conflicts and anxieties built into being a doctor may all too easily produce the need to stay in control. The doctor’s consulting role carries special responsibilities and anxieties and is inherently difficult. He must deal on a day-to-day basis with his own and his patients’ uncertainties, experiences of disaster, failures, helplessness, blame, panic and anxieties, as well as with the unconscious feelings that go with them. Actions must sometimes be taken quickly and routinely without adequate knowledge and with the awareness that a mistake can be fatal. Inevitably decisions will sometimes be hard to justify in cooler moments. The role also involves conflicts arising from social reality: for example, the doctor must mediate the demands of different patients, allocate scarce resources, mediate between the patient and his family and social network, mediate between the needs of his patients and those of himself, etc. To cope with the role both institutional and personal methods of coping have been developed: including, perhaps, tunnel vision, emotional withdrawal, being busy, being obsessed with one or more technical aspects of medicine and being omnipotent in his behaviour. The Apostolic Function [Balint’s term for the effect on an illness of the doctor’s own personality] is a similar defence.

    All these fundamental reasons applied even more in the past, when so much of medical care was hopeful illusion, maintained by patient and doctor who colluded in production not of effective care, but of often wilfully blind optimism and evasion of reality. All this has been a part of the Osier paradigm, escape from which requires understanding, not acts of will. Doctors still have to shoulder a great deal of threatening uncertainty, which few experienced people, either doctors or patients, would suggest can at all times be borne equally by both sides; it is still a necessary part of the job for most doctors most of the time to reserve to themselves a burden of uncertainty in diagnosis and prognosis, sharing this with the patient only after a narrower and more tolerable range of possibilities has been defined; otherwise they will  add even more to the patient’s own load of uncertainty and fear. Doctors are socially useful workers, a point sometimes overlooked by some of their academic critics.

    Are Patients Consumers or Producers’?

    Patients, and where there is a freely available health service, the public at large, are often referred to as consumers of medical care. Even the groups which are most hostile to medical dominance generally see the remedy for this in a strengthening of the rights and power of consumers, and see themselves as part of a national or even international consumers’ movement. Doctors chastened by the Liberal Critique are eager to concede this; they see limitation of the hitherto unchallenged authority of doctors as care-providers, and extension of the choices open to patients as consumers, as entirely progressive steps. The idea originated naturally from the private consultation as an essentially commercial transaction, in which doctors created a commodity which patients bought to consume for their personal benefit. Where no commercial transaction took place, for example when Sir William Osier examined a poor patient with an interesting disease at Johns Hopkins or the Radcliffe Infirmary, or later a National Health Service patient was treated free by her GP (what we might call ‘public’ rather than ‘private’ consulta­tions), the rights and powers of patients were diminished and the authority of the doctors increased, because both rested on the unenforceable customs of charity rather than the clearly defined property rights of sale. Beggars can’t be choosers, and accountability in a charity service arises only in extreme cases of breakdown. Patients’ rights appeared to be maximized when they were paying consumers within an essentially commercial transaction.

    The Osier paradigm was most apt where patients paid for their care, and were able to choose their doctor and insist on treatment of a quality consistent with its price. Private practice set the optimal level of quality with which State Charity was supposed to stand comparison, and was supposed to be what everyone would want if they could afford it. For doctors influenced by the Liberal Critique this was a slightly uncomfortable conclusion, because they knew very well that marketed medicine is no more trustworthy than marketed motor cars or any other commodity. Caveat emptor, above all when the seller seems to know everything and the buyer almost nothing. Sed quoque caveat vendor; a commercial sale may present a threat to the integrity of the seller as much as to the pocket of the buyer. The relation between all vendors and consumers is inherently adversarial, and liberal doctors remain fundamentally uncomfortable with the consumer-provider relationship.

    However, we have seen that medical problems can only be realistically defined by a joint effort between at least two kinds of skilled people: patients skilled in observing their own past history, present symptoms and the social settings within which problems arise and must be solved; and doctors (or other health workers) skilled in interpretation of this information, and able to construct from it a set of realistic diagnostic and therapeutic options. We have also seen that once medical problems are appropriately defined, there cannot be a realistic plan for their containment or solution without the same kind of joint effort, from doctors (or other health workers) who know what kinds of solutions to look for, and from patients who know how they might be applied within the constraints of their real personal lives.

    This is a production process, in which various consumptions (tablets, x-rays, doctors’ and patients’ time, etc.) may be necessary, but in which something new is present at the end of a consultation which did not exist at the beginning; a defined set of problems, together with tentative plans for their solution. This view is bad for medical sales. If doctors are to sell their skills as a commodity at the best price, they must discount or even conceal (first of all from themselves) skills contributed by the purchaser. If patients are customers they must be encouraged to think they can buy better health from doctors as a package, but may therefore be less willing to accept that they are going to have to do most of the work. Why buy a dog and bark yourself?

    Commercial transactions have almost vanished from British general practice since 1948, yet this conception of patients as consumers not only survives, but is gaining influence. How can this be explained? The idea has certainly gained new strength from the rapid growth of private medical care as the NHS has become less and less able to bridge the gap between public demand and State supply, though little of this has as yet occurred at GP level. It has also been reinforced by the strength of the consumerist movement in general, which, starting in the USA in the 1960s, has provided a popular platform for superficially radical and democratic ideas, without challenging (in fact powerfully reinforcing) the fundamental requirements of capitalism: private investment for the market rather than public investment for human needs, and denial in practice of all creativity which cannot be expressed in commodity terms.

    The weakness of this view becomes obvious as soon as we look at the real medical problems of real people. Who was responsible for maintaining the health of Hopkin Morgan? I was, he was, and so were a lot of other people who helped me (orthopaedic surgeons, renal physicians, radiologists and radiographers, laboratory technicians, nurses, etc.) and him (his wife, sons, daughters, mates at work and drinking companions). We were not always successful, and all of us may sometimes have counter-produced; but his present state of health is a social product of work done well or badly by many people, but usually starting from GP and patient in joint consultation. This process can be commercialized, albeit with difficulty. It is possible to break it down to make some of the more suitable fragments into commodities for sale, but not without damage; a jointly produced value which might have been shared and developed further must be divided into a sold profit for the vendor and a bought possession for the consumer, who then owe one another nothing. The episode of diagnosis and treatment becomes isolated, transient and superficial. The transaction damages and limits the value it claims to sell.

    All aspects of medical science are advancing, and inevitably this includes high-technology salvage in medical crises, in which the patient is indeed almost entirely passive and dependent on professional skills. In these primitive conditions, the Osier paradigm works. Such care could easily become a commodity for sale if society were sufficiently de-civilized to allow a market in life and death to operate, a possibility which our leaders of public opinion have now made thinkable. But acute care is not the main line of advance of either medical science or medical practice. Most of its effective techniques are already well understood and for the most part fairly well delivered, and many of the most super­ficially impressive new techniques don’t work in practice. Though the component techniques of (for example) intensive coronary care are impressive when taken one by one in isolation, careful studies in Australia, USA and Scandinavia of death rates from coronary heart attacks in hospitals offering different levels of technical sophistication show that those offering continuous monitoring, specially trained nursing staff for coronary care and emergency resuscitation, a staff cardiologist, and a cardiac surgical service are no more effective than hospitals without these facilities.(Reznik,   R.,   Ring,   I.,   Fletcher,   P.,   Berry,   G.,   ‘Mortality   from myocardial   infarction   in   different   types   of hospitals’,  British Medical Journal 1987; 294:1121-5.), (Bain, C., Siskind, V., Neilson, G., ‘Site of care and survival after myocardial infarction”, Medical Journal of Australia 1981; ii: 185-8.), (Bloom, B.S., Peterson,  O.L., ‘End results, cost and productivity of coronary care units’, New England Journal of Medicine 1973; 277:72-8.), (Hofvendahl,  S., ‘Influence of treatment in a CCU on prognosis in acute myocardial infarction’, Acta Medico Scandinavica 1971;519s:l-78.). What­ever benefits there may have been from more sophisticated technology since the late 1960s are evidently already available at nearly all hospitals, and special units with their very elaborate and expensive care have not improved outcome. More than half the deaths from coronary heart attacks occur during the first two hours after onset of symptoms, but the average delay between onset and arrival at hospital is at least three hours in most parts of Britain, mostly because of delay by patients in sending for a doctor or ambulance, probably because they don’t want to believe the pain has a potentially lethal cause (the process of denial). By the time most patients get to hospital, many of them might as well be looked after at home if family and nursing support are good. (Christiansen, I., Iversen, K., Skouby, A.P., ‘Benefits obtained by the  introduction  of coronary  care unit:  a comparative study’, Acta Medico Scandinavica 1971; 189:285-91.),(Mather,    H.G.,   Pearson,   N.G.,    Read,    K.L.Q.,   et   al.,   ‘Acute myocardial   infarction:   home   and   hospital   treatment’,   British Medical Journal 1976; i:925-9.), (Hill,    J.D.,    Hampton,   J.R.,    Mitchell,   J.R.A.,   ‘A   randomized controlled trial of home-vs-hospital management for patients with suspected myocardial infarction’, Lancet 1978; i:837-41.)

    Future advance in medical care will only develop on a mass scale through prevention or limitation of organ damage by strategies which depend on changes in human behaviour, or on interventions arising from the revolution in molecular biology which will be prompted by findings from population screening rather than presented symptoms. Much of this  could be achieved by improved living conditions for the whole population, better education, full participation in society and better customs of eating, working and playing freed from commercial pressures; but we will also need the precise individual targeting and support which could be available from professional health workers, if they were helped to escape from the Osier paradigm by a socially-oriented NHS which set targets and measured their attain­ment. Of course we need public health campaigns directed at the whole population, but the real test of useful change is whether we are giving effective help to the most vulnerable groups in immediate danger of irreversible organ damage, people with chronic disorders such as asthma, diabetes, high blood pressure, schizophrenia or epilepsy, and the honest present answer has to be that for the most part we are not. Previous chapters of this book have documented the evidence of incomplete care, with many patients still undiagnosed, and many more who have entered the care system but then dropped out because it is not geared to their needs.

    Riddle’s Five Steps for Effective Care of Chronic Disease

    In his paper ‘A strategy for chronic disease’, Matthew Riddle (Riddle,   M.C.,   ‘A   strategy   for  chronic   disease’,   Lancet 1980; ii:734-6.) an American specialist in diabetes, gave a perceptive review both of what’s wrong with medical care now and what needs to be done to put it right. The example he gives concerns diabetes, but applies equally well to every other chronic disorder:

    diagnosis and treatment [of diabetes] is not the major problem. . . We first make recommendations concerning diet and physical activity. If plasma glucose remains high, we prescribe oral drugs or insulin. But here begins the larger problem. These interventions must be more or less permanent and demand daily attention by the patient. They may require major changes in behaviour and the pattern of daily life. Thus, they are not treatments in the usual sense, administered by an expert to a passive beneficiary; they are new ways of living. A major and sustained change in behaviour is easy to discuss but hard to achieve. ..

    Research presses on at great cost, with substantial yield. . . We have new tools and better models of the old ones: purer insulins, accurate disposable syringes, glucose-oxidase strips, home glucose analysers and, on the way, the first generation of hang-from-the-shoulder, open-loop artificial pancreases.

    All these innovations are helping, yet they are not enough. They are, I think, slightly off the target. For one thing, more sophisticated specialists, systems and gadgets will bring more sophisticated forms of disaster. . . But my main concern is that we are juggling the parts without assessing the whole… We need a new strategy.

    Management of diabetes is a process which can be divided into five steps. All the steps must be completed if management is to be as satisfactory as possible. They have a logical sequence. Completion of the later steps reinforces the earlier ones, so management improves with time. Each step must be recognized as part of the overall plan, not over-valued for itself.

    1. Acquisition   by the health professionals involved of an adequate base of information about the disorder.
    2. Acceptance by the patient of primary responsibility for coping with the disorder and maintaining health.
    3. Learning by the patient of the physiology, complications, and details of treatment.
    4. Negotiation between patient and health professionals of general goals and specific objectives for management accept­able to both.
    5. Assessment of success in meeting the objectives using quantitative measures understood by both patient and health pro­fessional.

    … a systematic approach to chronic disease should become a central part of our medical heritage, together with the scientific method for research and the responsibility of the healer for the acutely ill. This five-part strategy may be a start.

    Medical care that is effective and available to all who need it, rather than illusory and promoted on the market or distributed charitably as an appearance of care without verified effect, is a social product in which patients as much as doctors need to become central performers. Escape from the tradition of doctor-centred consultation requires more than the narcissistic self-criticism of Balintry in practice, however patient-centred it may appear in theory.

    It requires first of all that doctors insist on having enough time to do their work properly, while also insisting that this quality of service must be available to the whole population as a human right. Effective consultations, which maximize inputs from patients and outputs in relevant action consistently applied, cannot be done within the 5 minute, 5×7 inch format of Lloyd George industrial practice. Unhurried, friendly, thoughtful consultation is not a luxury for the future, but a present necessity for effective care, and it’s time both patients and GPs insisted on having it.

    Secondly, doctors and patients must recognize the limited clinical effectiveness of the Osier paradigm, so that they no longer see the doctor-centred, episodic technical fix as the core of good practice, to which patient-centred ideas may be bolted on as an afterthought.

    The alternative paradigm is anticipatory care democratized at the design stage to include both active outreach from care-giver to patient, and active responsibility of the patient for definition and solution of problems. The only valid test of its capacity to deliver medical science more effectively than the Osier paradigm will be its effect not on individual cases at anecdotal level, but on the morbidity and mortality of populations, which leads us to the next chapter.

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    Introduction

    You will have heard much over the last two years about the restructure of the NHS resulting from the Government’s Health and Social Care Act of 2012. Some organisations have been abolished, new organisations have been created, and some organisations have changed their role and responsibilities.

    On the 1st April 2013, the NHS switched over from the old system to the new. This briefing will help to explain what changes have happened and how this may affect patients’ access to information advice and support.  This briefing is specifically about Manchester, but the pattern is similar across England.

    Greater Manchester Commissioning Support Unit

    The new world

    The vast majority of the changes to the NHS concern those organisations who commission services on your behalf i.e. those who plan, fund, arrange and monitor health services delivered in your area. The providers of services, for example hospitals or GP practices, will not be affected by these changes.

    Primary Care Trusts have until April commissioned almost all your local health services. On the 31st March 2013, they were abolished and their responsibility transferred to a number of different organisations:

    • Clinical Commissioning Groups (CCGs) – These are new organisations are led by local GPs. Their role is to commission:
    • Hospital Services
    • Community services such as district nursing or physiotherapist
    • Mental Health services
    • Learning Disability Services
    • NHS England (formerly the Commissioning Board (NCB) ) – This is a new, national organisation which has an ‘area team’ covering Greater Manchester. Their role is to deliver the Department of Health’s ambitions for the NHS by working with commissioners and providers of services across the country. They will also directly commission:
    • GP practices
    • Dentists
    • Pharmacists
    • Optometrists
    • Specialised services such as HIV care or heart transplants
    • Local Authorities – Under the changes, councils will become responsible for commissioning public health services. These are services which help you live healthier lives and help prevent ill health. There are a wide range of these but examples include:
    • Heath improvement work such as the Stop Smoking Service or weight management services
    • School nursing
    • Sexual health services
    • Drug and Alcohol Support services
    • Public Health England – This is a national body which will work closely with local authorities’ public health teams, carrying out a range of activities to protect and improve the nation’s health. Their work will include:
    • Co-ordinating work to combat infectious diseases such as flu
    • Co-ordinating work to combat infections acquired in hospitals such as MRSA
    • Deliver national publicity campaigns to prevent ill health

    This link takes you to an interactive diagram of the new health and care system from April 2013. It illustrates the statutory bodies that will make up the new system, oriented around people and communities and where they receive their local health and care services. Clicking on any of the organisations will provide you with more information about their specific role.

    Further information

    With such a range of new organisations, there is a danger that people don’t know where to go for up to date news and information about health services.  Organisations are taking positive steps to promote health services to the public.  For instance, the three Manchester Clinical Commissioning Groups are trying to make this as simple as possible for local people by keeping their information resources city-wide. These include:

    • An e:bulletin to be produced on a monthly basis and provide information about NHS services across Manchester
    • The NHS Manchester website  will become a website for the 3 Clinical Commissioning groups so you will only have to go to one site to get local health information and updates
    • The NHS Manchester social media sites (Twitter, Facebook and Pinterest) will continue to cover the whole of Manchester and will feature news from each Clinical Commissioning Group
    • Additionally, If you wish to contact any of the Manchester Clinical Commissioning Groups you can use just one e:mail address to get through to us:  talkinghealth@manchester.nhs.uk
    • National websites such as NHS Choices will continue to provide a range of information about all health services and common health conditions.
    • The new national phone line, 111, has been launched. This replaced NHS Direct and provides health advice by phone to people who require it urgently.

    Patients’ views count

    You will have seen a lot of coverage of the NHS in national and local media recently. The terrible events at Mid Staffordshire hospital, which led to a large number of people receiving unacceptable care, have highlighted the importance of listening to, and acting upon, the views and experiences of patients using health services.

    The Clinical Commissioning Groups have a key role to play in this and want to hear much more from you about the services in the city, both good and bad.

    Complaints

    Sometimes patients may wish to complain about, or need to resolve a problem with, a local service. They can do this in two ways. They can either:

    • Contact the service directly. You will need to ask the service itself the best way to do this. Or,
    • Complain to the commissioners of the service as follows:
    1. If it is about hospital services, community services or mental health services, patients should contact the Patient Services Team at Greater Manchester Commissioning Support Unit (GMCSU).
    2. If it is about Primary Care services, (GP practices, Dentist, Pharmacists or Optometrists) patients should contact NHS England.
    3. If it is about Public Health services, patients should contact the Local Authority.

    This may seem confusing but please be assured that if you contact any of the numbers above you will be advised on how best to raise your concerns.

    The GMCSU Patient Services team

    The three Manchester CCGs are all supported by the GMCSU Patient Services team.

    Patient Services provides the following functions directly to patients for and on behalf of the CCG in relation to services they commission:

    • Information advice and informal resolution of patient enquiries – this is the service familiarly and formerly known as PALS.
    • Complaints resolution.
    • Responding to MP enquiries.
    • Replying to requests made under the Freedom of Information (FOI) Act.
    • Dealing with any claims made against the CCG.

    The Patient Services team has a central base at St James House and this office is the focal contact point for all enquiries.  If patients wish to speak to a member of the team you can ring 0161 212 6270. The Patient Services team has dedicated email addresses for specific areas of their work:

    All postal enquires can be sent to St James’s House, Pendleton Way, Salford M6 5FW.

    Patient Services is staffed from 9am – 5pm Monday to Friday excluding bank holidays.  A confidential answerphone is available outside these times.  We aim to return calls and acknowledge emails by the next working day.

    Patient enquiries about primary care

    NHS England is now responsible for commissioning primary care services (GPs, dentists, opticians, pharmacy) and as such they are the first point of contact for all patient feedback, enquiries and complaints about these services.

    Should patients have an enquiry or complaint about primary care services this should in the first instance be sent to the NHS England Contact Centre. The contact details for the NHS England Contact Centre are:

    • Phone           0300 3112233
    • Email            england.contactus@nhs.net
    • Post             NHS Commissioning Board, PO Box 16738, Redditch B97 9PT

    The NHS England Contact Centre opening hours are 8am to 6pm Monday to Friday excluding bank holidays.

    If you are at all unsure about what action to take on receipt of an enquiry or complaint about primary care, please call the GMCSU Patient Services team on 0161 212 6270 and we will be happy to discuss this with you.

    Independent Complaints Advocacy

    Some patients require help and support to make their complaint.  The Independent Complaints Advocacy (ICA) service provides advice on how to make a complaint, support to empower patients to make their complaint and where necessary support at local resolution meetings.

    The contact details for ICA are:

    • Phone           0808 801 0390
    • Email            boltonica@carersfederation.co.uk
    • Post             5th Floor, Arthur House, Chorlton Street, Manchester, M1 3FH

    Further information on the role of ICA can be found on their website

    Healthwatch

    Healthwatch is the independent consumer champion for health and social care in England. Healthwatch England works with a network of 152 local Healthwatch organisations to ensure that the voices of consumers and those who use services reach the ears of the decision makers.

    More information on the role of Healthwatch generally can be found on their website together with details of any local  Healthwatch .

    Patient Experience

    There are many other ways that patients can share their experience of health services if they do not wish to contact services directly or make a complaint.  The following are some examples and where to find further information:

    1 Comment

    This is an official Department of Health briefing on the effect of the proposed clause 118 of the Care Bill

    Department of Health logo

    CLAUSE 118 OF CARE BILL – TRUST SPECIAL ADMINSTRATION

    Issue

    This briefing explains why the statutory duties of NHS England and clinical commissioning groups to involve and consult patients and the public in planning and making service change are dis-applied under clause 118 of the Care Bill in relation to recommendations made by a Trust Special Administrator (TSA) appointed to an NHS trust or NHS foundation trust (FT).

    Background – TSA regime & clause 118

    The TSA regime is a distinct statutory process intended to be used under exceptional circumstances.  The regime enables a rapid solution to the intractable problems of a seriously challenged NHS provider where other interventions are likely to have failed to secure adequate quality of care within sustainable resources.  It is time-limited to focus efforts on delivering a sustainable future for the services of a failed trust.

    Although the regime is different when compared to traditional attempts to reconfigure NHS services (a process that is led locally by NHS commissioners), a TSA is likely to include service reconfiguration proposals in their plans for making the services of a failing trust sustainable and maintaining service continuity. The main differences of the TSA regime are the timescales for consultation and final decision, and its clearer purpose and statutory basis. The regime, designed for an exceptional situation, has never been about a general approach for the reconfiguration of NHS acute services.

    A TSA works independently of Government.  He or she takes charge of an NHS trust or Foundation Trust while the board (and, for FTs, their governors also) are legally suspended, and develops and consults locally on recommendations in a draft report, before making recommendations in a final report to the Secretary of State (for NHS trusts) or Monitor (for FTs) about actions to secure a sustainable future for the services of the trust in administration.

    The special administration provisions were first introduced in the Health Act 2009, and provisions in the Health and Social Care Act 2012 amended them in relation to FTs.  Although the arrangements for NHS trusts and FTs are similar, there are differences that reflect the greater autonomy of FTs.

    The SofS appoints a TSA to an NHS trust, whilst Monitor appoints a TSA to an FT.  The statutory objective of a TSA appointed to an FT is to ensure the continued provision of essential NHS services, whereas the SofS sets the objective of a TSA at an NHS Trust at the time of appointment.  The TSA of an FT is required under law to seek the support of commissioners for their recommendations, whereas there is no such statutory obligation on the TSA of an NHS trust to seek commissioners’ support.  The final report on an NHS trust is submitted to the SofS who decides what action to take. In the case of an FT, the final report is submitted to Monitor which decides whether to accept the recommendations, with the SofS having power to veto the recommendations if he is not satisfied in accordance with various specified criteria.

    Clause 118:

    1. provides that a TSA appointed to a failing NHS trust or FT has power to make recommendations, and Monitor/the SofS the power to accept recommendations, that go wider than the trust under administration, including affecting other NHS trusts and FTs and other providers, where this is “necessary for and consequential on” the action the TSA recommends for resolving the problems of the failing trust.  The provision is not to be applied retrospectively;
    2. would increase the period for the TSA to produce the draft report from 45 to 65 working days, and the period for the TSA to carry out the public consultation from 30 to 40 working days.  The SofS and Monitor’s powers to extend the statutory timetable remain in place;
    3. would require a TSA appointed to an FT to seek, additionally, the support of commissioners of affected FT and NHS Trust services to their recommendations affecting other trusts.  There is already an existing requirement to seek support from the commissioners of the services of the trust in administration.  This is extended so that support from commissioners of affected services provided by other FTs and NHS trusts must be sought.  Commissioner agreement is needed in relation to the TSA’s draft report and before a final report can be prepared following the TSA’s consultation;
    4. would require the SofS to include in the statutory guidance for a TSA appointed to an NHS trust, guidance on seeking commissioner support and involving NHS England in relation to finalising the draft and final report.  It is intended that the guidance will set out the level of support that a TSA appointed to an NHS trust should seek from commissioners – for both those who commission from the trust in administration and from other providers affected by the TSA’s recommendations.  Where the TSA is unable to secure the support of commissioners, it is intended that the guidance will set out the arrangements for him or her to seek support from NHS England for the recommendations;
    5. would clarify that the statutory obligations of the commissioners (NHS England and clinical commissioning groups) to involve and consult patients and the public in planning and making service change do not apply in respect of the TSA process.  There are various statutory requirements in the Health Act 2006 for NHS England, clinical commissioning groups, NHS trusts and FTs to undertake consultation with patients and the public in planning and making service change.  Clause 118 makes it clear that these consultation requirements would be dis-applied to NHS England and clinical commissioning groups in the same way such requirements are already dis-applied for NHS trusts and FTs.   The clause would also clarify that the disapplication provisions apply whether the TSA process relates to a failing FT or an NHS trust.

    Discussion

    A TSA is under a legal obligation to undertake a consultation on his or her draft report recommendations, currently for 30 working days.  This includes a duty to consult the public to allow anyone with an interest to give their views, thereby providing an important opportunity to validate and help improve the TSA’s draft recommendations.

    The TSA regime is a deliberately time-bound process.  One of the principal benefits of the regime is the speed with which it delivers recommendations for clinically and financially sustainable services.  As such, during the TSA’s consultation on their draft recommendations, the obligation to consult the local authority and the power for the local authority to report to the SofS, is expressly dis-applied in relation to proposals contained in a TSA’s draft or final report.  In addition to a TSA’s existing duty to consult the public on their draft recommendations, a TSA must also consult the commissioners of the trust in administration.  Furthermore, the changes being proposed in clause 118 would strengthen the requirements for a TSA to seek commissioner support for their recommendations.  The SofS may also direct a TSA appointed to an NHS trust as to the persons he or she must consult.  In the case of a TSA appointed to a FT, Monitor may similarly direct the TSA as to the persons to be consulted (the SofS also has power to direct Monitor as to whom the regulator should direct the TSA to consult).  Beyond minimum legal requirements, it is expected that a TSA will use his or her judgement in deciding which other people and organisations it is appropriate to consult, applying ordinary public law principles.

    The proposal to dis-apply the statutory obligations of commissioners to involve and consult patients and the public when those commissioners are planning and making service change in respect of the TSA process is intended as a clarificatory amendment.

    These consultation requirements placed on clinical commissioning groups and NHS England for local reconfigurations of services are inconsistent with the accelerated consultation process of the TSA regime, and could lead to parallel consultations.  Commissioners are generally expected to consult on proposals they have developed for service change for a minimum of 10-12 weeks, with the provision for the local authority to be consulted, and, if it has any concerns about the process or the proposals, report to the SofS.  Local authority involvement is already dis-applied under the law in relation to the TSA’s final or draft report.

    In relation to clinical commissioning groups and NHS England, clause 118 would simply follow the existing similar dis-applications in the Act which apply to NHS trusts or FTs, and update and clarify that the existing dis-application in relation to Trusts applies whether the trust in administration is a FT or an NHS trust.  Prior to the 2012 Act, Primary Care Trusts’ statutory obligations to consult were dis-applied in respect of the TSA’s regime.  Clause 118 now achieves a consistency which was overlooked  in the 2012 Act when PCTs were abolished, which omitted to roll forward this dis-application to clinical commissioning groups and NHS England,

    DEPARTMENT OF HEALTH

    15 NOVEMBER 2013

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    (Apologies to non anoraks – but this is important!)

    There has rightly been a lot of excitement about the proposals to extend the powers granted to Trust Special Administrators; powers which could then be used to bring about changes to services (known as reconfiguration) without proper consultation or engagement with those affected.

    Few appear to be aware that the rights we used to have around reconfiguration went some time ago when the Health & Social Care Act 2012 was passed into Law in April.  As with a lot of the arguments about Health & Social Care Act the complaints at the time were simply ignored.  Here is how.

    Pre 2013 there was a duty on the commissioners of services, the Primary Care Trusts, under Section 242 of the NHS Act 2006:-

    (2) Each body to which this section applies must make arrangements with a view to securing, as respects health services for which it is responsible, that persons to whom those services are being or may be provided are, directly or through representatives, involved in and consulted on—

    (a) the planning of the provision of those services,
    (b) the development and consideration of proposals for changes in the way those services are provided, and
    (c) decisions to be made by that body affecting the operation of those services.

     In those good old days there was a lengthy and exhaustive guidance on the process that had to be followed, which would ensure compliance with statutory requirements if done properly. This process was last set out by a letter to the various interested parties (NHS Bodies, Local Authorities, LINKs, Independent Review Panel) in July 2010 when the 4 Lansley tests:

    1) Support from GP Commissioners
    2) Strengthened Public and Patient engagement
    3) Clarity around clinical evidence base
    4) Consistency with patient choice.

    were added to the 8 step process:

     1) Planning and needs assessment
    2) Stakeholder discussions
    3) Gateway and National clinical advisory team Reviews of proposals
    4) Formal consultation
    5) Analysis of consultation responses and decision
    6) Referral to Overviews and Scrutiny Committee (OSC)
    7) Consideration by Independent Review Panel
    8) Implementation  { Steps 6 and 7 would not always be required if the reconfiguration was not questioned by OSC.}

    that had been in place previously.

    Guidance was enforced by Strategic Health Authorities which made sure Primary Care Trusts followed the rules, using powers of direction over PCTs as in Section 242 (5).  Many in the Department of  Health and outside hated this process as it made reconfiguration difficult and time consuming.  But as we have just seen with the huge (and contested) reconfiguration of acute services across NW London it is possible to get through the process – in this instance leaving the final say to the Secretary of State.

    To be fair there was some common sense proportionality applied, in that small changes could be carried out with less robust arrangements and consultation and involvement could take various forms, but Section 242 was the LAW and so could be the basis for Judicial Review for non compliance.

    We now have Health & Social Care Act and Clinical Commissioning Groups  leading reconfigurations and no strategic bodies of any kind and Section 242 does not apply.  The Health & Social Care Act Section 26 says something very different.

    14Z2 Public involvement and consultation by clinical commissioning groups

     (2) The clinical commissioning group must make arrangements to secure that individuals to whom the services are being or may be provided are involved (whether by being consulted or provided with information or in other ways)—

    (a) in the planning of the commissioning arrangements by the group,
    (b) in the development and consideration of proposals by the group for changes in the commissioning arrangements where the implementation of the proposals would have an impact on the manner in which the services are delivered to the individuals or the range of health services available to them, and
    (c) in decisions of the group affecting the operation of the commissioning arrangements where the implementation of the decisions would (if made) have such an impact.

    (3) The clinical commissioning group must include in its constitution—

    (a) a description of the arrangements made by it under subsection (2), and
    (b) a statement of the principles which it will follow in implementing those arrangements.

     Most Clinical Commissioning Groups  have “complied” with (3) by putting into their Constitutions some motherhood and apple pie about Patient Reference Groups – which are effectively selected by the Clinical Commissioning Group itself and sometimes only on an “as and when needed” basis.  This fiction is then rubber stamped by NHS England. This allows Clinical Commissioning Groups to claim they meet the requirements and so they need not have ANY wider public and patient consultation. They go further and state that the existence of this general purpose group also allows them to meet statutory requirements which place a duty on Clinical Commissioning Groups to promote the involvement of patients and the public.  One day we must see what a Judge makes of this!

    What about the NHS Constitution?  That makes clear about consultation:-

     The system of responsibility and accountability for taking decisions in the NHS should be transparent and clear to the public, patients and staff.

     The NHS Commits to:-

     to make decisions in a clear and transparent way, so that patients and the public can understand how services are planned and delivered

    • to engage staff in decisions that affect them and the services they provide, individually, through representative organisations and through local partnership working arrangements.

    Well Section 26 of  Health & Social Care Act  sets out:-

    (1) Each clinical commissioning group must, in the exercise of its functions—

    (a) act with a view to securing that health services are provided in a way which promotes the NHS Constitution, and
    (b) promote awareness of the NHS Constitution among patients, staff and members of the public.

     How commissioners should interpret what the constitution says is set out at some length in Annex B to the Procurement Guide for Commissioners of NHS-Funded Services making very clear staff and patients should have high expectations about genuine involvement throughout any process.

    So far as Clinical Commissioning Groups  are concerned any kind of engagement, especially with affected staff and elected representatives does not apply to them.  It is not within the scope of their Groups.

    It is part of the widespread confusion that the reorganisation under   Health & Social Care Act has inflicted that nobody appears to have any idea whether the 2010 Reconfiguration Guidance does or does not apply. It is clear from the evidence of what  Clinical Commissioning Groups are actually doing that they think it does not; as long as they talk to some ill defined group they are free to do whatever they choose.  They are not accountable to anyone and have no need to get authorisation whatever the scale of change they plan.

    Why is this important?

    Across the country many Clinical Commissioning Groups are engaged on procuring NHS services driven by another insanity – S75 of the   Health & Social Care Act.  Clinical Commissioning Groups are looking to procure through Competitive Tendering  £100m’s of NHS funded services and they feel free to exclude the “stakeholders” from this process.  They can do all this behind a cloak of commercial confidentiality which excludes everyone from knowing what is proposed for our money!  They may, or may not, decide to consult more widely once they have decided on who gets the contract (for all that will be worth) but many appear to think they don’t need to do that either. Oh, and forget the staff.

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    Five ideas to make a reality of active patients/citizens

    1. Patient access to electronic GP records.
      Access to your patient record really changes the relationship between you and your doctor. It improves self-care, and increases the chances of you taking your medication properly. It helps patients understand their care better and therefore feel more confident. It’s safer because patients can share their record with whomever they want – consultants, carers, A+E in the USA if they fall ill. Patients should be able to add but not subtract. The system should include links that help them understand what they read. And they should be able to write co-designed care plans. The online record should become a portal to a wide range of personalised health supports that have yet to be written but would not be difficult to do. Feedback to NHS organisations, linking local public health campaigns with you personally, linking you with local 3rd sector groups, social health networking. And so on. Good info can be found at www.myrecord.org.uk Record Access is available now at a GP near you. The government will make it mandatory for all practices from 2015, but until then the practice can refuse you access if they choose.
    2. Social action on health. Also known as community development.
      There is strong evidence that bringing people together in geographical areas (and probably via groups of interest as well, such as people with diabetes):

      1. protects health,
      2. empowers communities to change things for themselves with statutory agencies
      3. helps tackle health inequalities
      4. improves behaviour change
      5. probably saves money for a wide range of statutory agencies.

    There are patchy examples of this work. Many make significant impacts on the NHS and on people’s lives, particularly when asset-based. It also naturally integrates services as people demand change at many different sectors at once. We need to find ways of making it far more likely that Clinical Commissioning Groups, Local Authorities and Health and Wellbeing  Boards commission this work.  Good examples

    1. A sea-change in self-care and shared decision-making.
      We know how to do this. There is lots of evidence for benefit. Patients want it, too. We need techniques to be available for clinicians and patients (record access, decision aids, care planning) but most importantly we need training for clinicians, particularly docs. If docs promote this way of working, it could transform care. Germany has begun on a systematic scale. We need medical students taught it, GP and hospital registrars. A big job for HEE.
    2. The NHS must see itself as responsive to its patients and citizens and populations.
      No longer the prima donnas but expert servants. NHS structures must become increasingly democratic. They need to see one of their prime roles as proactively seeking dialogue with their patients and populations with a view to incorporating their ideas and insights into daily planning and monitoring. We need a shift towards Health and Wellbeing  Boards as main commissioners because they have some democratic legitimacy and eventually move to LAs as commissioners. We need lay people (perhaps increasingly trained as patient leaders) in every section of the CCGs and HWBs.We now have evidence that listening and responding leads to safer more productive care. We need campaigns similar to the “Wash your hands” campaign that encourages and inspires patients to highlight safety and responsiveness. General practice must take part in this  it has been aloof for too long. Should we move to patient committees on practices. Other suggestions might include:
    • Lay people mandated on key committees. Maybe super Patient Participation Groups to become part of every CCG’s planning process.
    • Responsiveness monitored both by patients and by the Care Quality Commission. If inadequate, less money or no further authorisation or Foundation Trust status.
    • HWBs to sign off CCG plans
        5. Massive increase in online feedback.
    I think Tim Kelsey has got the right ideas about using online feedback from patients about their experience of care, but it has to be linked with responsiveness or, like Mid-Staffs nothing happens even if the organisation has the feedback. So commissioners and providers must be made to be responsive.
    1 Comment

    I have been performing my role as a lay member of the Durham Dales, Easington and Sedgefield Commissioning Group  for just over a year now, so it is a good time to take stock as to whether the new system of public involvement in the NHS does involve the public more and better than happened in the past.

    One thing is certain.  Everything in the NHS is now much more open and transparent than it used to be.  As Sir David Nicholson, Chief Executive of NHS England, recently remarked, there are not necessarily more failings now, it is just that we know about them because everything is out in the open.

    David Taylor-Gooby

    But does that mean public involvement is better?  I had a look at an article by Professor Bob Hudson on this subject.  Professor Hudson is at Durham University, and has done a considerable amount of work about the NHS and advises local NHS bodies.  He argues that there is a danger involvement can simply be “feedback” or even a form of market research to gain people’s opinions of how well services are performing. All very well, but not really an input into what the NHS does.

    I have argued here before that if the NHS is to survive given increased demand and limited resources, some difficult choices have to be made. These will invariably be unpopular, so the public will have to be involved, and be part of the debate.  People will resent it they are asked to agree to decisions which have already been made without knowing the reasons.

    Professor Hudson argues there are two ways this can be done, what he calls “representative” and “participatory” governance.  The first means giving far more control over the NHS to elected bodies, namely the local authority.  The second would entail setting up a membership body, rather like the Foundation Trust for hospitals, which people join and then have a say in how the Commissioning Group  is run.

    The NHS already works far more closely with local government than it used to, so I am not sure that this approach would necessarily involve the public more. If we are to go for the “participatory” approach, then the NHS will have to put effort and resources into it.  It is no good inviting people simply to come to a “talking shop” because if they think it is a waste of time most of them will not want to come.  Issues must be explained, and people will have to feel their views and ideas are being listened to.

    This approach will require time and effort, but as I have argued many times before, unless we take people with us we will not be able to deliver an NHS fit  for the twentyfirst century. As the NHS Constitution says, “The NHS Belongs to the People”.

    David Taylor-Gooby is a Lay member of the Durham Dales, Easington and Sedgefield Commissioning Group.  He writes in a personal capacity.  This article was first published in the Peterlee Star.

    2 Comments

    By Leslie Hilliard 26.9.1952

    Before 1948 local interest and popular support was directed almost entirely to the few large and many small voluntary hospitals.   Little or no interest was shown in the municipal hospitals owing to their Poor’Law ancestry.   It was usual for the medical profession and the public to react emotionally to the two types of hospital and give fulsome praise to the voluntaries and run down the others often without sufficient knowledge of what really went on in either type of establishment.

    Today in the National Health Service a new dichotomy has been substituted for the old. In England and Wales the teaching hospitals are a semi-autonomous group which has inherited mantle and prestige of the former voluntaries while all the rest of the country’s hospitals, almost without exception, have been unified into a national service under the Regional Hospital Boards.

    The grouping of hospitals of different sizes and functions .under Hospital Management Committees has had the effect of giving prestige to the large general hospital of the group. Nearly always this will be an ex-municipal hospital and the former voluntary hospitals with their relatively small number of bed’s take on a minor ancillary role.   The bulk of the population needing hospital care will today receive it in the many units of the Hospital Management Committee groups.   Those now attending teaching hospitals are, therefore, many fewer than those who formerly attended and therefore supported, the voluntary hospitals.

    In the four years that the National Health Service has been in operation the effect on public opinion resulting from the above circumstances has already become apparent.   The attitude of patients and their relatives to the former rate-aided hospitals is rapidly, if unconsciously, changing.   The old distinctions have been abolished  by Law,   and the local hospital  is becoming “the”  hospital of the locality  whether  it  was previously  patronised or  ignored  by  those  who  were  not   its patients.     This would not have been possible without the recent physical   improvement of the municipal hospitals by progressive local   authorities and the even greater upgrading now made possible under the National Health Service.

    Although local  interest   and  support  for hospitals varies greatly  in different   localities an increasing number  of  bodies  of organised   supporters  calling themselves the  Friends of X Hospital or a  similar title  have  now developed.   In general short-stay hospitals the members may be ex-patients their relatives or any local citizen who has become   interested   in the hospital.  With Friends  of  Sanatoria,   children’s long stay e.g. orthopaedic hospitals, and particularly mental  and mental deficiency hospitals the majority  of members  are  relatives of the patients, as they have the maximum interest in and incentive  to   improve the particular hospital.

    The main function of these organisations is not primarily charity as   in the old days when the hospital was directly supported by voluntary contributions. The activities of Hospital Friends are an  indication of  local   interest  and  concern in the hospital and it is the  development  in the public of  identification with  its local hospital  that  will  be   our  greatest   safeguard  when “economies”are directed to the lowering of hospital  standards.    The Friends of St. Leonards Hospital showed their strength when they prevented a step being taken by the G.N.C. which would have resulted in the closing of the hospital for lack of nurses.

    Organisations of hospital friends can learn about the standard of care   and the   needs of their hospital.   Some of  these needs  can be met  out  of  their own collected funds but  the  Friends’  most useful function  is to make known the need,  to focus attention on it  and to   stimulate those responsible  to meet it.

    By way of example mention may be made of the ‘Friends of the Fountain”, a hospital for 600 mentally defective children. In the past three years they have set up an active and well organised committee of parents, and have a membership of about 400.   They have collected money from their members to provide amenities for the   children.   But by interesting outside persons and bodies in the work of the Fountain Hospital they have already collected over £5,000. They have  presented  a £500  occupations hut  for patients, contributed £1,000 towards the  furnishing  of a holiday home  at Hastings for  which they had  campaigned and were the prime movers in obtaining the much used hospital coach.

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    They contribute to the hospital’s monthly magazine and arrange socials for parents and entertainments for the children.  Their most valuable function has been to inform the public of the problems of mental deficiency by developing the National Association of Parents of Backward Children which has given guidance to many parents and organised lectures and radio and. television talks on the subject.

    If Friends  of  Sanatoria were  developed  all  over the   country and became  as    active   in their   special  field  of  anti-Tuberculosis propaganda  it  would be  a great   step to  the achievement   of our stated aim  of  abolishing that  disease   in a  generations.

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    Part of our response to the Labour Party Policy consultation June 2012

    What aspects of your local NHS could be improved upon?

    1. The local NHS is expected to tackle problems associated with the consumption of alcohol, tobacco and other addictive drugs, too much fat sugar and salt and a sedentary lifestyle with little support from central or local government.
    2. GP services that provide proactive and responsive primary care – they seem to provide ever less.
    3. Mental health services that are effective, have a social model of mental distress (while treating biological problems) and are integrated into he wider social and health support systems.
    4. Proper public dentistry system rather than the anarchic patchwork of profit seeking private contractors.

    Are there positive examples in your local NHS that others could learn from?

    1)     Cooperative Commissioning: Lewisham have agreed to implement this new approach to collaborative work. http://www.scribd.com/doc/95337680/Cooperative-Commissioning-planning-for-collaboration

    2)     LINk database: Lewisham LINk has designed and used a database into which all patient experience is placed. We now have 1000s of comments which can be used to guide commissioning decisions in the patients’ interests. http://www.lewishamlink.org.uk/Database.html

    3)     A Patient and Public Involvement Strategy that is simple, cheap and effective in Lewisham – and very collaborative, bringing together all the key players.

    4)     Community Development that works with local people and local organisations to improve health and behaviour change.

    5)     Collaborative partnerships in Oxfordshire between health and social care in the areas of learning disability (intellectual disability), rehabilitation of older people; community (salaried) dental service. Walk in clinics before the PCT axed them!

    6)      North Lancashire CCG is pioneering a self care project to try and change Health Professionals and patients attitudes to this. It is a supertanker to turn round but can be done. If Labour grasp this one they could be streets ahead on this issue.

     What kind of service do we want to see for carers and families are there any examples of local services that are working well?

    1. We don’t think there is perfection anywhere. The key principle is to create channels of communication and the opportunity to challenge what the services do – the major improvements in our experience have all come about as a result of this. Some of this can be mandated via policy but a lot comes from local commitment and hard work – easier if there is an enabling policy context.
    2. There are far too many stories of carers of people with learning difficulties or dementia being completely ignored by hospital services

     

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    David Colin-Thome, Independent Healthcare Consultant and Visiting Professor, Manchester Business School, Manchester University, UK and School of Health, University of Durham

    Brian Fisher, GP and Patient and Public Involvement Lead, NHS Alliance

    Key message

    If Health and Wellbeing Boards are to make a real and lasting impact on the health and resilience of the populations they serve, they must revitalise the principles of community-oriented primary care, with its values of health protection, social justice and community development.

    Why this matters to us

    When I (Brian) started GP practice in 1976, I found a community-development programme a few steps from the health centre in south-east London. It was founded on principles of social justice and values of co-operation and challenging power. It changed my life (and I married the community worker…) and I have tried to put these values into operation across the NHS ever since.

    When I (David) began GP practice in 1971 I was greatly influenced by Dr Julian Tudor Hart and Dr Geoffrey Marsh who, as GPs, focused on the individual and the population of patients. Later, I was influenced by my friend Professor John Ashton as we explored the GP practice as a public health organisation, and further shaped by my work as  a local councillor.

    Key message

    If Health and Wellbeing Boards are to make a real and lasting impact on the health and resilience of the populations they serve, they must revitalise the principles of community-oriented primary care, with its values of health protection, social justice  and community development.

    Health and Wellbeing Boards are one of the innovations in the Health and Social Care Act of 2012. They could herald a long overdue new public health by harnessing community activity such as asset-based community development.  Health and Wellbeing Boards are intended to span the worlds of public health and primary care.

    The Role of Health and Well-being Boards

    Each top tier and unitary authority will have its own health and wellbeing board. Board members will collaborate to understand their local community’s needs, agree priorities and encourage commissioners to work in a more joined up way.

    • Health and wellbeing boards will have strategic influence over commissioning decisions across health, public health and social care, integrating services.
    • Boards will involve democratically elected representatives and patient representatives in commissioning decisions alongside commissioners across health and social care.
    • Boards will bring together clinical commissioning groups and councils to develop a shared understanding of the health and wellbeing needs of the community.
    • Through undertaking the Joint Strategic Needs Assessment (JSNA), the board will drive local commissioning of health care, social care and public health, bringing in other services such as housing and education provision.

    R.H.Tawney said: ‘The poor have remained beloved by the Gods being afforded excellent opportunities for dying young’.  This remains a truth today despite the huge improvements in the public’s health and in healthcare. These improvements have disproportionately benefitted the more advantaged.  Narrowing these inequalities should be a priority of Health and Wellbeing Boards. Can they deliver this when so many public health policies of the past have not? We argue that they can, and they must. To do so they must complement the present public health approach that is concerned with discrete interventions targeted at individuals, with on-going interventions that help whole communities and families to help themselves.

    General practice has always had a population responsibility (the registered list) as well as a responsibility to individual patients. These twin responsibilities lie at the heart of what it means to be ‘family and community-oriented’ – concerned not only with treating the diseases that a patient has, but also recognising the impact of their social context – family relationships, jobs, crime and so on. Indeed, this is one of the main reasons why  decentralised generalist healthcare systems are more effective than centralised specialist-led systems. In the words of Berwick:  “general practice and primary care is the soul of a proper, community orientated, health-preserving care system’[ii]. In the words of Starfield: “The well known but underappreciated secret of the value of primary care is its person and population, rather than disease, focus[iii]

    Clinical Commissioning Groups  now have their hands on the reins of the NHS. This presents an opportunity to meaningfully span the general practice role of personal care and public health in collaboration with their local authorities through Health and Wellbeing Boards. General medical practices are statutory members of CCGs and have to work together to achieve the aims of Clinical Commissioning Groups to reduce costs and retain quality. As has been described in recent papers in LJPC, it is becoming increasingly common for clusters of 10-20 practices who serve populations of about 50,000 to come together to develop collaborative practice – to share the load of overwhelming demands, for mutual support, and for improved care. Different places have called them different things – ‘Local Health Communities’, ‘Health Networks’, ‘Cells’ and ‘Hubs’.

    These new clusters of general practice could provide a shared space for collaboration between public health and primary care. In these spaces multiple agencies could work together to provide in our cities and towns what pioneers like Julian Tudor Hart in South Wales[iv] and achieved in small communities – improving whole community capacity and resilience as well as personal medical care. They could translate to the 21st century the vision of Sidney Kark’s ‘community oriented primary care[v] and Ashton’s ‘New Public Health’[vi],

    Health and Well-Being Boards  could make this happen, by ensuring that general practice and community services plan and act in concert with public health, local authorities, schools, voluntary groups and many other organisations, to synchronise their efforts for health improvement. Conventional individually-focused approaches to health promotion (e.g. smoking cessation, healthy eating and physical activity) could be complemented with social approaches that harness the energy in communities (termed ‘asset-based community development)[vii].  This approach helps people to help themselves – more effective than imposed solutions. As Kretzmann says: “healthy communities have never been built upon their deficiencies but have always depended upon mobilising the capacities and assets of people and place[viii]. It means recognising that health is more than the sum of their medical diseases, and includes a sense of coherence that Antonovski calls salutogenesis[ix] and MacIntyre calls Narrative Unity[x].

    In this paper we revisit the evidence that a social approach to health improvement is effective at improving health and that it is cost effective. From this we suggest what Health and Wellbeing Boards can do to shape a winning course.

    A community development approach improves health

    Community development builds confidence to act for health improvements. For example, community development work on the Beacon estate in Cornwall showed sustained improvements – when the community realised that they could make a difference by working together, their motivation to act increased and they caused sustained improvements in housing, education, health and crime[xi]. Similar results have been seen in Balsall Health[xii].

    The key link is that community development extends and strengthens social networks. These are the links between people that shape their sense of identity – making them feel that they belong and capable of making an impact. Social networks are formed in thousands of ways everyday brief encounters – in pubs and shops, clubs and schools for example.  Social networks are good. A meta-analysis of data across 308,849 individuals, followed for an average of 7.5 years shows a 50 % increased likelihood of survival for people with stronger social relationships.  This is consistent across age, sex, cause of death and is comparable with risks such as smoking, alcohol, Body Mass Index and physical activity[xiii].

    Social networks and social participation also protect against cognitive decline and are associated with reduced morbidity and mortality[xiv].  Low levels of social integration, and loneliness significantly increase mortality[xv].  Social networks are weaker in more deprived areas and poor social participation is associated with mental ill health[xvi].  Improving social networking and social relationships reduces the risk of depression[xvii].

    Those areas with stronger social networks experience less crime[xviii]   while enhancing employment and employability[xix].  Social cohesion and informal social control predict a community’s ability to come together and act in its own best interests and is derived, in part, from participation in local associations or organizations[xx].

    There are a variety of models of different kinds of community development to examine, many of which have improved healthcare services. For example the “Linkage plus” programme developed and deepened social networks for older people while redesigning health services with their participation. Significant improvements in health and independence resulted[xxi].

    Two examples of what has become to be termed ‘Asset Based Community Development’:

    The Health Empowerment Leverage Project, HELP

    HELP  focuses on the creation of a long-term problem-solving neighbourhood partnership between residents and front-line services from health and other agencies. The partnership is led by residents but generates parallel action and learning amongst agency staff enhancing the development of confidence, skills and co-operation and creating a cumulative momentum so that such developments are self-renewing so the whole atmosphere of the neighbourhood becomes more positive.

    HELP adopted a method known as ‘C2’,   which displayed exceptional success over 15 years across 6 deprived rural and urban estates.  A review of the longer term effects of a C2 project run on the Beacon Estate in Penwerris, Cornwall found improvements between 1995 and 2000 in education, health, employment and crime.18

    HELP has developed an approach that can assist Clinical Commissioning Groups and Health and Wellbeing Boards to assess the social capital of their communities and track changes that have taken place as a result of intervention.

    Connected Care in eleven sites since 2006.

    The Connected Care project,  part of the organisation Turning Point, set out to build on existing social capital and resilience to improve health and social care outcomes for local people in Owton ward in Hartlepool.

    Community Researchers were recruited from the local community and supported by Turning Point and local agencies. Two hundred and fifty one local residents participated in an audit via one to one interviews, focus groups and a community “have your say” event.

    The results of the audit informed the development of the Connected Care service that is delivered through a local community social enterprise, incorporated as a Community Interest Company. The service includes navigators, a debt and benefits advice service, support for older people to stay in their own homes for longer, supported housing for young people as well as a gardening and handyman service. It also includes a time bank to utilise the skills of local residents and co-ordinate volunteering between local people. Connected Care is now managing 32 flats in Glamis Walk that are owned by Accent Foundation who have now commissioned Connected Care to manage the whole estate.

    Connected Care is being rolled out across Hartlepool building on the service delivered in Owton ward and community research activity across the town over the last 18 months.

    The programme in Hartlepool has expanded from 100 people receiving support to over 500 people benefiting from the range of services – including benefits and welfare advice, luncheon clubs, social activities, gardening and handyman services, and meals on wheels. This service is expecting to triple again the number of people in the SAILS programme over the next year. On the back of this expansion the Council has awarded Connected Care the contract to provide luncheon clubs and reablement support for elderly people leaving hospital.

    Cost-benefit of Community Development Initiatives

    The evidence above shows that community empowerment improves health, and there are good reasons why general practice should contribute to leadership of such community empowerment; also the contemporary clustering of general practices into geographic areas provides a new practical shared space for it to happen. Surely Health and Wellbeing Boards and Clinical Commissioning Groups must therefore ensure that it happens.

    But there is one important other piece of evidence – is it cost-effective?

    Studies show that community empowerment is cost-effective, not merely in deprived areas but in all economic climates[1]. When people in an area take charge of their destiny, they can better contribute to the design of cost-effective and humane services that improve quality and contain costs better than when they are unable to contribute.  Making resources available to address the association between poor health and poor social networks and break the cycle of deprivation has been shown to decrease health care costs[2].

    Social Return on Investment19 is a social value approach to measuring an economic return on investment. It has been used to track the cost benefit of a community development worker in four local authorities, identifying, supporting and nurturing volunteers within their areas to take part in local groups and activities.

    An investment of £233,655 in community development activity was found to have created approximately £3.5 million in social return, a return of 15:1. The time invested by members of the community in running various groups and activities represented almost £6 of value for every £1 invested by a local authority.

    Lomas shows that harnessing social networks has an effect comparable to bio-medical interventions. He estimates for every 1000 people exposed to each “intervention” per year

    • Social cohesion and networks of associations would prevent 2.9 fatal heart attacks
    • Medical care and cholesterol-lowering drugs would prevent 4.0 fatal heart attacks in screened males

    HELP was asked by the Department of Health to explore the cost-benefit of community development . Examining the HELP interventions in three neighbourhoods across England,it was estimated that serious medical events would be reduced by 5% per year – an NHS saving of £558,714 over three years on depression, obesity, cardio vascular disease. This is as a result of local interventions such as exercise groups, dietary interventions and deepening of social networks.  This is a return of 1:3.8 on a £145,000 investment in community development over the three years.  Adding savings produced by reductions in crime and anti-social  behaviour would produce a further saving of £96,448 a year per neighbourhood using directly age standardised mortality rates per 100,000  £868,032 across the 20% most disadvantaged neighbourhoods of a local authority and £130m across England. This represents a return of 1:9.

    What should Health and Wellbeing Boards Do?

    It is understandable why there has been so little general practice leadership of community empowerment – medical training that emphasises the treatment of discrete diseases and the science of collaboration and empowerment is largely absent from formative and continuous medical education. Health and Wellbeing Boards must act to reverse this, firstly at the post-graduate level, working with Local Education Training Boards to develop skills to lead this in the new clusters of general practices.

    It is understandable why there has been so little collaboration between general practice and public health practitioners to lead community empowerment – general practices have operated in isolation to deal with patients on a one-to-one basis. Previously attempt to systematically build community resilience and social cohesion have only been realistic in small communities where the shared boundaries are given by nature. In larger areas the absence of shared boundaries fragments collaborative initiatives. Health and Wellbeing Boards must act to consolidate these new clusters of practices as a shared developmental space where local authorities, public health business and third sector organisations can contribute to a New Public Health.

    It is understandable why there is not more evidence of the huge untapped potential of community empowerment to improve health. Databases in the NHS are focussed on individuals with individual diseases.  Health and Wellbeing Boards must ensure that Clinical Support Units routinely gather data of the effect of these clusters on things like unscheduled admissions to hospital, place of care for those who are dying, and a breadth of other indices that will be affected by the large number of small acts of kindness that happen in empowered communities. They must provide reports of these data on a regular (monthly) basis so local people can witness the effects of their actions.

    Health and Wellbeing Boards should also support pilot projects within these clusters, and create mechanisms for results to be fed back to Clinical Commissioning Groups so others can learn and change. Health and Wellbeing Boards should encourage such long-term capacity-creating interventions as an antidote to the usual old-fashioned projects that have short-term focus. They should work with universities to support evaluation of these initiatives.

    The literature about Asset Based Community Development is particularly worth reviewing. This involves residents identifying local skills and experience, then discovering what they care enough about to change, then creating mechanisms to act together to achieve those goals. HELP and Connected Care use this approach.

    If Health and Wellbeing Boards perceive their roles narrowly they will chart a traditional course with two or three key priorities focused on (probably medically-perceived) priorities. And they will fail. But if they claim a wider role (and they should), they could position themselves as enablers of a new public health that provides the training, the conditions and the evidence that community empowerment produces better health at lower cost.

    References


    [1] Knack S. Social Capital, Growth and Poverty; A Survey of Cross-Country Evidence. Social Capital Initiative, Working Paper No. 7, Washington, D.C.: World Bank. 1999

    [2] Fair Society, Healthy Lives Strategic Review of Health Inequalities in England post 2010 p139 The Marmot Review February 2010 © The Marmot Review ISBN 978–0–9564870–0–1 Xiix

    [ii] Berwick DM. A transatlantic review of the NHS at 60. BMJ 2008;337:a838

    [iii] Starfield B, Shi L, Macinko J. (2009) Contribution of primary health care to health systems … quality of care in England. N Engl J Med. 361(4): 368–78

    [iv] Hart J. A New Kind of Doctor. (1989) Merlin Press

    [v] Communityoriented primary care: the legacy of Sidney Kark. American Journal of Public Health. 83(7):946-7, 1993 Jul. Gillanders WR)

    [vi] Ashton J, Seymour H. The New Public Health. Milton Keynes:  OUP, 1988

    [vii] Morgan M. & Ziglio.  Revitalising the public health evidence base: an asset model in Morgan & Ziglio (Eds) Health Assets in a Global Context: Theory, Methods, Action, Springer. 2010.

    [viii]  Kretzman and McKnight.  Building Communities from the inside out. 1993.

    [ix] Antonovsky, A. Unraveling The Mystery of Health – How People Manage Stress and Stay Well, San Francisco: Jossey-Bass Publishers, 1987.

    [x] MacIntyre A. After Virtue. London: Duckworth, 2000

    [xi] Developing sustainable social capital in Cornwall: a community partnership for health and well-being (The Falmouth Beacon Project) By Hazel Stuteley O.B.E. and

    Claire Cohen Cornwall Business School, 2004

    [xii] Atkinson D. Civil Renewal . Brewin Books 2004 ISBN1 85858 267 9

    [xiii] Holt-Lunstadt, Smith, Bradley Layton Social relationships and mortality risk: a meta-analytic review..Plos Medicine July 2010, Vol 7, Issue 7.

    [xiv] Jenkins R, Meltzer H, Jones P, Brugha, T and Bebbington, P. Mental Health and Ill Health Challenge. London:Foresight. 2008.

    [xv] Bennett K. 2002. Low level social engagement as a precursor of mortality among people in later life. Age and Ageing 31: 165-168.

    [xvi] Berkman LF and Kawachi I (2000) ‘A historical framework for social epidemiology’ in Berkman LF and Kawachi I (Eds.) Social epidemiology. Oxford: Oxford University

    [xvii] 9 Morgan E and Swann C. Social capital for health: Issues of definition, measurement and links to health. London: Health Development Agency. 2004

    [xviii] Ed. Fulbright-Anderson K and Auspos P. Fear of Crime and Neighbourhood Change. Community Change: Theories, Practice, and Evidence. 1986

    [xix] Clark P and Dawson S. Jobs and the Urban Poor. Washington, D.C.: Aspen Institute. 1995

    [xx] Ed. Fulbright-Anderson K and Auspos P. Fear of Crime and Neighbourhood Change. Community Change: Theories, Practice, and Evidence. 1986

    [xxi] Willis M and Dalziel R. LinkAge Plus: Capacity building – enabling and empowering older people as independent and active citizens. Department for Work and Pensions Research Report No 571 2009

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    I feel passionately about the NHS for  two main reasons.  One  is that it is efficient, and international comparisons show that it delivers good results in a very cost effective way compared to other countries. The other is that it embodies the sort of values which as a Christian Socialist I believe in.  It embodies in a practical way the concept of loving one’s neighbour as oneself.  It is something to which we all contribute, and use when we need to.  In that way it promotes solidarity or togetherness and holds us together as a society.

    It looks at health as a social good, which we all have duty to promote.  I suppose the other way to look at it is as a commodity, which we buy and sell like any other. Under such a system we all look after ourselves and don’t worry about anyone else.  That is the way private insurance schemes would see it.  It worries me that the present reforms could take it in that direction.

    We have lived in an era where private enterprise has carried all before it, and public bodies have been castigated as bureaucratic and inefficient.  I often think we couldn’t set up the NHS now.  Private interests would not let us.  Look at all the battles Obama has encountered in America trying to establish something which we would regard as falling short of what we have here.  So it is a treasure we must value.  The “NHS belongs to the people” is the first line of the NHS Constitution, and in my opinion the people must never let it go, or they will never get it back.

    But I am a practical person, and I have been involved in politics in one way or another most of my life, so I know full well that it is no good having fine ideals if they cannot be put into practice.  That doesn’t mean we should not have ideals, but we have also got to think carefully how they can be realised in a practical way.  If we want to keep the NHS, as most of us do, we have to accept that it will have to change.  It is no good getting the banners out every time a change is suggested.  So I set out to think carefully want sort of NHS we want in the future.  The result is my book, “What sort of NHS do we want?”.

    I started off standing in the Front Street of a village near where I live in East Durham. It has a population of just over 5000.  It was established as a colliery, but the pit closed in 1981.The signs of economic decline are rather obvious, but what strikes you most when you walk down the Front Street is the number of fast food outlets – six at the last count, with two shops which concentrate on cheap alcohol.  There are also two large care homes.

    Here in microcosm are the problems facing our health service.  Economic decline has brought bad health and the resulting bad habits.  There is also a large, and growing, population of the elderly for whom care has to be provided. It seems to present an enormous challenge.

    But things are not as bad as they appear at first. I found there are many good people in the village who are trying to do something about the situation. There is a lively health centre, with innovative and dedicated GPs and a go-ahead manager.  There is a thriving garden association which has 250 gardens and a waiting list.  It provides fresh vegetables which are sold at the community centre.

    The community centre itself has been pro-active in attracting funding, and now runs a range of activities. Currently over 350 people of all ages use a wide variety of services at the Centre including healthy living activities such as skipping, indoor bowls, tea and line dancing; keyboard classes, IT classes, drama workshops, cake decorating, art classes plus a fitness suite and a Community Café. The latest addition is pilates.

    What impressed me most about the community, however, is the Health Forum.  This was originally set up by the Primary Care Trust, but funding has now been cut.  They originally had professional help, but they now run it themselves and have managed to secure funding from various sources. It received a small grant which it used as leverage to attract additional funding, and then distributed it to projects which promoted good health.  In the past it has supported various schemes, including a project to install low level lighting to minimise the risk of falls in senior citizens’ bungalows, outdoor ventures for the cadets and other youth groups, and an allotment.  The actual spending of the money was properly monitored. All this was done by volunteers who cared about their community and its health.

    So there is hope.  A community which has been on the sharp end of recession and economic decline, and has experienced their effects at first hand, is doing something about it.

    It made me think.  What sort of role do we see for the NHS in the future?  We frequently hear about the health risks of bad lifestyles, and how conditions such as obesity are likely to increase.  We have managed to tame smoking, but alcohol abuse shows no sign of abating.  The NHS will be financially constrained whichever government is in power, and we cannot expect it to solve all our problems alone.  Communities must do something to help.

    From here I set off to look at various examples of good practice here in the North East.  We tend to think of ourselves as poor relations to the rest of the country, and that is certainly what people in the South seem to think.  Our NHS is very good though.  Not only do we have world class hospitals here in the North East, but all our health organisations have become Foundation Trusts which means that they had to reach certain standards. One, Northumbria, is recognised as being good enough to take on Cumbria, which has experienced problems.  You probably do not know either that the North of England Commissioning Service (NECS) which is the organisation which grew out of the PCTs to commission health care for the new Commissioning groups is also highly regarded.  It too has taken on Cumbria, and manages NHS IT systems outside the region.

    So as far as the NHS is concerned we have something to tell the rest of the country.  What struck me from my work was that the most successful health organisations were those which involved people, and took them with them.  If you think of what is going to happen in the future perhaps you can see why this is.

    Many of our health problems result from bad choices and unhealthy lifestyles, whether it be bad diet, too much alcohol, lack of exercise or smoking.  We have made progress in reducing these problems, particularly the FRESH campaign to reduce smoking, but there is still a long way to go.  I believe that we will only really get to grips with these issues if the NHS works closely with local communities and everyone takes responsibility for doing something about it.  People are more likely to take notice of their friends, neighbours and relations than someone giving them a lecture. There are examples I have discovered where this approach is very effective.

    The other challenge is the perverse  result of  a good thing – people living longer.  We are more likely to need medical care when we are ill, however healthy a life we have led.  Many of us will need long term care, and our aim should be to provide this in the community as far as possible so people only have to go to hospital for serious cases. This again means engaging with the community.

    The other obvious fact is that the NHS and local government must work together, and this is starting to happen.  Both are organisations which must engage more in various ways with the community.

    Whichever government is in power, resources will be limited, so we must make hard choices as to how money can be most effectively spent, and politicians are not always very good at this.  More resources will have to go into the community, and this will inevitably mean fewer, but better equipped hospitals.  It is no good running out to defend every closure, even of a service which is hardly used or is no longer effective.

    It is a big challenge, but we have to rise to it, or we will no longer have an NHS as we know it.

    Now I want to explain some of my conclusions.

    I interviewed many people and looked at many organisations.  I was impressed, and somewhat humbled, by the dedication and enthusiasm of the people involved.  There definitely is an “NHS ethic” which motivates people to go the extra mile, and it is something we lose at our peril.  The debate about privatisation is not so black and white as many think it is.  The private sector makes a valuable contribution to the NHS.  There are some services it cannot provide, and it relies on the private sector.  Sometimes NHS services fail to deliver, and then the first priority is ensuring the public receive a good service, so in some cases the private sector is the only answer.

    But most of the people I spoke to wanted the NHS to remain a largely publicly run service, accountable to the public.  They also wanted the various parts to continue to work together and were worried that extensive privatisation could undermine this, with various private contractors not cooperating with others.  Perhaps most importantly of all many, while valuing the contribution of the private sector when necessary, did not want that valuable “nhs ethici” destroyed, and they feared widespread privatisation would do that.  The threat of privatisation, which this Government seems intent on hanging over people’s heads, is very demoralising for staff.

    My  book addresses two issues, which are interlinked.  One is that the pressure on the NHS will increase, but the resources to fund it are finite, and it is no use pretending they are not. The other is that it needs to be more closely linked with the wider public, and in particular local government.  The two are interlinked because the need to address the health problems we face, and use resources effectively, will mean the reorganisation of services, in many cases the transfer of resources from acute hospitals into the community, and this may involve the closure, or conversion, of some hospitals.  This is always a difficult issue, and can only really be addressed if the NHS is honest with the public, explains the issues to the them, and is willing to engage in a wide-ranging productive debate . Local politicians need to engage as well, and not simply try to gain short-term popularity by opposing every change of use or closure of a facility. If we are to be successful in dealing with the major challenges linked to unhealthy lifestyles such as cancer and diabetes, then we must have the public onside too. If we do not they will come back to bite us not only in terms of human misery, but crippling costs for the NHS as well.

    We do not know what state the economy and the NHS will be in at the time of the next election, or what the complexion of the next government will be.  I sincerely hope that the NHS will be a major issue at that election, and the country can make a decision as to whether it wants to continue with a National Health Service, involving all of us, free at the point of use, but expecting obligations from us as well, or move towards some sort of insurance based privatised system, as some big vested interests seem to want.

    I am optimistic.  Big business carried all before it in the last decade of the twentieth and first decade of this century, delivering wealth which was unequally distributed but still sufficient to pay for improvements in health and other social goods such as housing, schools and railways.  Now the system has proved to be unable to deliver in the long term, as thinkers as diverse as Adam Smith and Marx have pointed out in the past, and is being challenged all over the world.  Even the high priest of unfettered financial power, who thought he could ignore governments, Rupert Murdoch, has been called to account.  I do not think the British people will want to entrust such a precious commodity as health to the vagaries of big business. But it is not enough just to have an enthusiasm for the NHS.  Unless we have a clear way forward the system will not be able to deliver and people will become disillusioned.

    Because it does express such deep moral values, political support is easy to mobilise to defend the NHS, so we must make it clear that although it may sometimes need to use the private sector, the system is not going to be privatised, and some form of individual health insurance established.  We will still have a collective national health system.

    Demands on the NHS will increase.  The population is ageing, medicine and medical equipment will become more expensive, and the consequences of “lifestyle” diseases, such as diabetes, coronary heart disease and some cancers, unless they are addressed, will add further costs.

    I return to that first sentence of the NHS constitution – “The NHS belongs to the people”.  How do we make this mean something, so people will want to support and defend their NHS?

    Involving people in any organisation is not easy, and it is hard work.  I know, I have done it in the NHS for some time.  Involvement has to be meaningful.  People will soon find out if their involvement is purely tokenistic, so someone else can “tick a box”, they will get fed up, feel used, and drop out.  But it can be done.  Northumbria NHS Trust, which covers North Tyneside and Northumberland, has 70,000 members, and is a powerful force in the community.  This did not happen by accident. It took a lot of work and a strong personal commitment by the chair.  It means, however, that the Trust has been able to involve its members in carrying out some radical changes.

    Compare that to other NHS trusts of similar size.  They usually have about 5000 members.  An official of one confided to me that they did not want too many members, because it was “too much work to look after them.”  Not an attitude we want  in a modern NHS.  One of the proposals in my book is that Trusts who do not involve people should be obliged to follow the good practice of those who do.

    Having worked with volunteers, I know the problems.  Some have nothing else to do, and like going to meetings.  Others  like to hob-nob with doctors.  Some even turn up for the lunch!  A more common problem is very committed people who are obsessed with a single issue, often an illness which has touched their family.  But having said all that the majority are good people with something to contribute.

    Volunteers must be treated in a professional way.  Many complain that they are not treated seriously by professionals, and this is often the case, and I can understand why.  Some volunteers are unreliable and do not take what they are doing seriously.  Others are concerned about promoting particular issues. Volunteers need to be properly recruited,(and vetted, following the horrific Jimmy Savile revelations) and understand their obligations.  In return they must be given proper expenses, and even possibly some sort of honorarium for their work. There also needs to be training. This does put some responsibility on the NHS or voluntary organisations.  If volunteers do not perform effectively there must also be a way of improving their performance, or if necessary, removing them. There needs to be a professional relationship.

    The other big link with the people is democratically elected local government.  The new legislation gives local authorities a bigger role in planning health care.  There is a need for social care and health to work more closely together, particularly in the community.  It is not always easy, since the two services have different procedures and philosophies.  There is also the charging issue – NHS services are free, whereas social services are means tested.  But Northumberland has merged community health services and social care into a single trust, so it can be done.

    Local authorities are now in the process of taking over public health from the old PCTs, and this means they can link up more easily with other services important to health, such as leisure services and housing.  They also have their mechanisms for involving the public.  Durham has its network of Area Action Partnerships. Local authority budgets are under pressure, both with the cuts and the increasing demands of care for the elderly, but they, like the NHS, will have to learn to work “smarter” and deliver more with tight budgets.

    So that is a brief sketch of how a “people’s NHS” could develop.  There is much more in the book.  If you get a chance to read it please tell me what you think on one of the great issues of our time.

    David Taylor-Gooby’s book, “What sort of NHS do we want? is published by Searching Finance, and is available from the publishers on Amazon.

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    Part of our response to the Labour Party Policy consultation June 2012
    1. Stop getting distracted by the NHS market. It has not yielded the benefits it was intended to over the last 20 years and an effective “commissioning function” remains as elusive as ever.
    2. Gather patient experience of their care
    3. Use national and international data to help inform the best pathways of care for all major conditions along the four stages of a continuum of prevention, diagnosis, treatment and aftercare.
    4. Ensure that the patient voice is integrated into every part of the planning and commissioning process with a formal legal duty that commissioners and providers need to show that they are responding (not just listening) to the populations they serve.
    5. National standards and a kite mark for a responsive organisation – Monitor has responsiveness as its remit – CQC monitors responsiveness.
    6. Providers need to demonstrate improving patient experience scores (not patient satisfaction). Money held back if not improving.
    7. Develop more 24/7 acute and community services, financed by moving cash from expensive capital and labour intensive DGH services to community forms of prevention and care
    8. Better information management which means reforming the data protection act for more joined up agency working; and/or equipping people with more easier to understand information to make better (more utilitarian) decisions. It’s time to bring the NHS into the age of Information Technology.  There has been talk about patient centred services for many years, but the experience of most is that we have to co-ordinate services ourselves.  Each institution operates in a vacuum, and knows little if anything of what happens outside its boundaries.
    9. We need to start with a recognition that we have moved from the situation in the 1940s when we still had a single relatively short life cycle with death shortly following retirement, if you managed to get that far.  Arguably there are now two distinct life periods:  early years and establishment as an adult up to around age 40 and now the second half of life with average life expectancy in 2011 for men at 78 and for women at 82.  We need to think more systematically about the second half of life which can be usefully split into four phases:
    • Preparation for active old age
    • Active old age
    • Vulnerable old age
    • Dependent old age

    At present most of our thinking is focused on the vulnerable and dependent and relatively little thought is devoted to preparation for active old age and active old age.  No one wants to become vulnerable, lonely and dependent and end their life with an undignified hospital death, but this is the greatest fear for many older people. We should describe more fully what “a good death” looks like (pain free, with chosen ones around, in the place of our choice etc) and make the delivery of a good death  an important goal of the NHS.

    1. New Labour governments focused on two things, timely treatment and forward deployment of expertise. Timely treatment includes reduced waiting lists and times, faster attention in general practice and A&E departments, and fast tracking of patients with suspected cancer. These achievements may be eroded by the current government’s policy, and need to be defended. They show the advantages of central direction of the NHS.
    2. The best example of forward deployment of expertise is the change in the consultant contract to make senior staff more available, working closer to the front line. This has the potential to make treatment decisions more appropriate to the patient, and to offer better care, provided that a range of services are available to deliver the treatment options. So, for example, an individual seen in the A&E department may need investigation in a 24 hour medical assessment unit, observation and review in a 72 hour ward, admission for therapy to an acute ward, simple treatment that can be given at home, or short-term home-based care by a ‘hospital at home’ service. This planned segmentation and diversification of services is an alternative to a market-driven menu of choices.

    There are two problems with this approach. There is resistance to it amongst hospital doctors, especially those in training, who are uncomfortable with the out-of-hours work that it entails. And we do not yet know how to restore the gatekeeper function of general practitioners, which is being so eroded by consumer pressure that referrals to all specialties are rising.

    1. To improve the patient experience, remind & reinforce health professionals’ existing codes of conduct & guidance on consent to treatment & confidentiality. All too often you hear of cases where informed consent was not the approach to offering and selecting treatment. I continue to be shocked by how easily many health professionals just gossip about patients thinking it’s ok if they don’t give the name OR merrily release information to relatives without ensuring there is consent for this, sometimes information will be given to others that has not been given to the patient. So reinforce respect!
    2. Ensuring any organisation or establishment providing healthcare is brought into the scope of the Care Quality Commission and registered. Ignore the flack they have taken, the registration process, the ensuring of best practice & evidence of this are good and sensible and what should be happening anyway. The inspectors are great – practical people who care about patients & are wise to their contradictions. This alone should ensure GP practices and hospitals are welcoming and staff are not permitted to be judgmental.
    3. Promote cultural change whereby this is put at the centre of health workers’ responsibilities along with safety and effectiveness. Remove barriers to this (e.g. the pressure under which many front line services work, and remove perverse targets. Promote the involvement of patients and their representatives in reviews of services with an obligation on service management to respond with action plans.
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