Category Archives: Public and Patient Involvement

Involving people in the decision making of the NHS

This article was first published at HIV i-Base on 25 April 2018.

The revised BHIVA Standards of Care for people living with HIV are primarily produced as a reference for commissioning HIV services. It also describes a minimum standard of care that HIV positive people can use as a reference.

These 90-page guidelines were last updated in 2013 and this third edition was launched at the 4th Joint BHIVA/BASHH Conference in Edinburgh.

The Standards was produced by a writing group of more than 90 individual doctors, health workers and people living with HIV. It was a collaboration with numerous professional associations, commissioners and community groups.

The main changes to this edition include:

  • Reducing the number of standards from 12 to 8, but with each one covering broader themes.
  • A new section is included on person-centred care. This includes wider aspects of social circumstances, including stigma and discrimination, self-management, peer support and general well-being. The importance of these issues are emphasised by this being an early chapter.
  • Recognising the new U=U consensus: an undetectable viral load means HIV cannot be sexually transmitted – with or without a condom (although some sections of the document have inconsistent information on U=U that will hopefully be quickly updated).
  • The section on complex care has been broadened with more detail about access to specialist non-HIV treatment.
  • Another new section covers HIV across the life course covers HIV treatment and care from adolescence to end of life. This includes palliative care in the context that ART might continue to work well to the very end of life.

There are now eight chapters covering major themes. Each chapter and subsection includes quality statements and auditable targets.

Standard 1 covers testing, diagnosis and prevention and the 90:90:90 goals to eradicate HIV. All three areas are ways to maintain and develop combination prevention. This includes increased testing, early treatment, viral suppression and PrEP. Combination prevention helped bring about the dramatic reduction in HIV transmission seen recently in the UK. HIV positive people are important partners in combination prevention.

Standard 2 is about person-centred care. This has been described as “the fourth 90” and focusses on the whole person, not just HIV. BHIVA say it considers, “desires, values, family situations, social circumstances, and lifestyles. And in so doing, the needs and preferences of HIV positive people can be responded to in humane and holistic ways.” It challenges HIV stigma and discrimination and works towards equality in health and social care. Social inclusion and well-being – crucially aided by peer support – are key to person-centred care.

Standard 3 covers HIV outpatient care and treatment. Anyone newly diagnosed must be seen by a specialist HIV doctor within two weeks and given access to psychological and peer support. In some cases this referral needs to be within 24 hours. There is no gold standard for measuring engagement in care, but transfer of care should be seamless whether a person moves home, is incarcerated or simply moves to another clinic. Increasing numbers of children living with HIV from birth are now becoming adolescents. Management by interdisciplinary teams must ensure successful transition to adult HIV services. A qualified doctor must prescribe ARVs and monitoring according to current national guidelines.

Standard 4 is about complex HIV care. Inpatient care must ensure that an HIV specialist is included in the hospital multidisciplinary team. HIV positive people are living longer and often go into hospital for non-HIV related problems. They may be cared for safely and appropriately in a local ward or clinic. But they must also be supported by immediate and continued HIV expertise and advice. HIV positive people must have access to specialist services for other conditions such as cancer. But clear protocols and agreed pathways are essential for safe delivery of services. This section also includes supporting people with higher levels of need. It includes successful management of multiple long-term conditions, poor mental health, poor sexual health, and problems with alcohol or substance use.

Standard 5 is on sexual and reproductive health. It is important that HIV positive people are supported in maintaining healthy sexual lives for themselves and their partners. In addition, anyone at risk of other STIs and infectious hepatitis, perhaps through drug use, should be supported and given advice. Care should be given for contraception, fertility services, pregnancy planning, and access to abortion services. Care must ensure that babies are born healthy and HIV negative. Care for the mother’s health is key to giving birth to a healthy baby.

Standard 6 is on psychological care. HIV positive people should receive care and support that assesses, manages and promotes their emotional, mental and cognitive wellbeing and health. This should be sensitive to the unique aspects of living with HIV. HIV positive people have higher rates of depression, anxiety, addictions, self harm, and other mental health issues than the general population. Mental health needs must be screened on an annual basis. This includes screening for poor cognitive function that can cause memory problems and reduce ability to perform simple tasks.

Standard 7 covers HIV across the life course. This section looks at standards of care for everyone who is HIV positive. Management of ART should be individualised at every age. It starts with adolescents (aged 10 to 19 years) and young adults (aged 20 to 24 years). Education and personal development – as well as achieving healthy sex lives and relationships – should be supported by experienced sexual health advisers and specialist nurses.

The years from 25 to 65 are described as early to middle adulthood. Most people in this age group are diagnosed as adults. Care for early diagnosis and treatment should include peer support as well as psychological support. HIV positive people should be supported in having healthy and fulfilling sex lives and engaged in treatment as prevention (U=U).

The over 65s – whether newly diagnosed or long-time positive – should be given access to treatment for complex comorbidities. This is an area of significant emerging knowledge and will likely develop over the course of these standards. Successful care may be achieved through co-speciality clinics, mentoring schemes, or by identified experts in advice and guidance. Palliative care is now included here. Palliative care ensures that the individual and their family are supported, receive appropriate care that meets their needs and preferences, and do not experience unnecessary suffering

Standard 8 covers developing and maintaining excellent care. This standard covers knowledge and training to ensure specialist services are provided. It sets standards for monitoring, auditing, research and commissioning. It also sets standards for public health surveillance, confidentiality and information governance.

Roy Trevelion was a community representative on the Standards writing group.

COMMENT

These comprehensive Standards are very welcome.

The community was involved at every stage from planning to the final draft, with at least one community representative on each chapter and more than 15 UK-CAB members collaborating overall.

The result is a comprehensive benchmark for health and wellbeing for HIV positive people.

All sections provide bullet points for measurable and auditable outcomes and must be promoted in primary and secondary care, health & social care, public health, and local authority healthcare provision.

As bureaucratic and structural changes affect the structure of HIV services, these Standards should be a reference for ensuring that high-quality care for HIV positive people is maintained.

The inconsistent messaging over undetectable viral load and HIV transmission will hopefully be corrected. As the publication is only available in PDF format, this should be relatively easy. Several formatting problems, including difficult legibility (light font, justified text) would benefit from being revised. 

It is good to see the inclusion of HIV positive people in the photographs throughout the report, supported by the UK-CAB and Positively UK.

Reference

BHIVA. British HIV Association Standards of care for people living with HIV 2018. April 2018.
http://www.bhiva.org/standards-of-care-2018.aspx

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QMC

Nottingham University Hospitals NHS Trust (NUH) is the first NHS trust to achieve the Soil Association’s Gold Food for Life Catering Mark for serving fresh, healthy meals – made with local, seasonal and organic ingredients. The Food for Life Catering Mark recognises food providers who prepare meals which meet high standards of traceability, freshness and provenance. The Gold Catering Mark means that at least 15% of total ingredient spend is on organic ingredients, and that menus make use of ingredients produced locally and in the UK.  77% of NUH’s raw ingredient spend is now on local ingredients. Meat, fresh produce, bakery products and milk are all sourced locally, ensuring security for local suppliers and helping the local economy. Switching to local suppliers has been cost neutral and allowed the Trust to invest £2m per year in local sustainable businesses.

This means that NUH is able to supply patients, staff and visitors with high quality meals at an ingredient cost price of £4.53 per patient per day – this includes breakfast, lunch, supper snacks and seven beverages each day. NUH operates below the national average for patient day costs.

 

Sustainable future?

Means

“…meeting our needs now…

…without compromising the ability of others to meet their needs, now or in the future.

Slow motion emergencies are usually hidden by noise, and our short term political / economic incentives –

A slowly increasing baseline can suddenly increase the likelihood of extreme events – (those that exceed the red line)

1.Experience is an important cause of ignorance.

2.As much of the world becomes “wealthier”, it is often at the expense of others, both now and in the future. “Ecological paradox”

3.There are very powerful anti-health and anti-fairness forces at work.

Development as freedom

To be healthy? means 

…to have access to, and control over, those things that enable us to live lives that have value, purpose, and meaning…

Environment

Creating the right environments for fair health:

Human environment

Who produces the greenhouse gases?

Who bears the burden?

40,000 early deaths across the UK per annum are attributable to air pollution. (60,000 if NOx from e.g. diesel engines included).  An average 8 month loss of life for every person, especially lung disease and stroke.

“The opposite of poverty… isn’t wealth…

Bryan Stevenson

Bryan Stevenson

… the opposite of poverty is justice.”

Growth at all cost increases mental health problems1 and undermines equitable prosperity. The  Nuffield Foundation concluded: “What is striking is that, in a counter-intuitive way, rises in mental health problems seem to be associated with improvements in economic conditions and physical health.”

Bike

StepO Meter

It’s the law

Climate Summit

Climate Change Act 2008 and COP21, Paris 2015

  • Implementing the CCA08 is a legally binding agreement
  • An economy that is sustainable, fair and prosperous is not only possible, it’s happening:

–one third of growth since recession is in the green economy

–8% of the total economy

  • Off shore wind has halved in price in last 2 years (now cheaper than new gas)

Public Services (Social Value) Act 2012:

“…all public bodies in England and Wales are required to consider how the services they commission and procure might improve the economic, social and environmental well-being of the area.”

Wellbeing of Future Generations Act

The Global Goals

Global Goals

Merchants of Doubt

More doctors smoke Camels

Would you generally trust these people to tell the truth? (The Ipsos Mori Veracity Index 2016)

Who do you trust?

200 years of public health action

200 years of public health action

Priorities for government:

1.Implement the existing laws that protect conditions that create and protect health and fairness.

a)Polluter pays, zero carbon incentives, meeting climate change targets by rapid move to 100% renewables and a zero-carbon energy system.

b)Social value through employment, procurement, investment, partnerships.

2.Measure value and benefit, not just cost of sustainable interventions that deliver immediate AND long term health benefits (food, energy, travel)

a)Infrastructure investments  (especially housing, food, and transport)

b)Supply chains – legally mandated whole supply chain ethical auditing

c)Alternative to traditional discounting rates of 3%, and 3 year ROI

3.Redefine community health and prosperity beyond materialism

4.Report by moving from Financial Reporting to Financial, social and environmental reporting (“Triple bottom line reporting”, “Integrated reporting”)

This was presented at our conference Public Health Priorities for Labour

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Wales is the only part of the UK where “deemed consent” to organ donation applies. The means that any deceased who is over 18 years, is mentally competent and who had lived in Wales for  12 months is deemed to have given consent to organ donation unless they have formally registered their objection.

About a decade ago, the UK had a low organ donation rates (13 / million population) compared to countries such countries as Spain, USA and France. As well it had a much lower rate of next of kin refusal. In Wales around three people per month died while waiting for an organ donation with about 300 people on a transplantation list.

The issue was considered by the National Assembly for Wales Health and Well-being Committee in 2008. Though its report did not recommend  “presumed consent”, the Welsh Government felt there was sufficient public support for the proposal and indicated its intention to legislate on the matter. A commitment to do so was included in the Welsh Labour, Plaid Cymru and Liberal Democrat’s manifestos for the 2011 National Assembly election.

The Bill was introduced into the National Assembly in December 2012. Over the next year an extensive debate and consultation took place. There was broad support for its purposes though concern was expressed, by Christian and Islamic faith groups in particular, that “deemed consent” was not real consent and that it undermined the altruistic virtue of the gift of donation.

A key feature of the legislation was its “soft opt-out” option whereby close relatives are involved in the donation decision with particular attention being paid to any evidence that the deceased may not have wished to have their organs donated.

In the run up to the beginning of the legislation in December 2015 there was an major campaign to both explain the new legislation and to raise awareness on the wider organ donation need in Wales. The legislation will require the Welsh Government to maintain a programme of promoting public awareness and to report on progress.

At the end of the first year of the legislation the Welsh Government reported “… the latest figures show that 39 organs from patients whose consent was deemed have been transplanted into people who are in need of replacement organs.

In the two years prior to the introduction of the new system of deemed consent, .. (we) made significant efforts to inform the public of the exact nature of the upcoming changes in respect of transplantation activities. During this period the number of organs transplanted increased each year, from 120 between the 1 December 2013 and 31 October 2014, to 160 between 1 December 2015 and 2016.

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David Cameron notoriously claimed at the April 2014  Welsh Tory Spring Conference that Offa’s Dyke had become “the line between life and death” due to the performance of the Welsh NHS. However fortunately for the truth and honest debate, almost to the day the Nuffield Trust published its comparative study “The four health systems of the United Kingdom; how do they compare?”. It reported :- However, this latest study ….. reveals that while there are few indicators on which a devolved country does better than England or its North East region, the performance gap between England and the rest of the UK has narrowed in recent years. There is little sign that one country is moving ahead of the others consistently across the available indicators of performance.

Despite being  being caught out, the Prime Minister continued to misrepresent the state of the NHS in Wales. By October 2014, when challenged about the state of the English NHS, he demanded that “ …Let’s have an OECD inquiry … I want a comparison between the Labour NHS in Wales (and England)..” He went on to say that Labour was “ ..totally terrified of (its) .. failures in Wales on the NHS.” Indeed Monmouth Tory MP, David Davies, went so far as to suggest that the Welsh Government was doing everything it could to delay the production of such a report.

However despite all this rhetoric the report, “OECD Reviews of Health Care Quality: United Kingdom 2016”, was published in February 2016. And it concluded that from the limited country specific data available “… no consistent picture emerges of one of the United Kingdom’s four health systems performing better than the other.” In short, again, there was no evidence to support Cameron’s claims about the relative performance of the Welsh NHS.

The line between fact and fiction.
In his response to the publication of the review the Welsh Health Minister, Prof Mark Drakeford said “This report is the line between fact and fiction. Any claims of one nation having a second-rate NHS compared to others simply do not reflect the facts. The time has come for a real, mature debate about the future of our health services.” Can we expect Mr Cameron please take note?

While the OECD showed that each administration needs to improve its performance, in relation to Wales it concludes that continuously improving quality of care is deeply established and widely shared across the Welsh health system. And where things are not going well, the Review felt that the Welsh Government’s “Escalation and Integration Framework” was a robust tool for quality assurance and intervention.

These are important messages as for most of the last half decade Welsh Tories have been arguing for a total “Keogh style” review of the NHS in Wales with the implication that the NHS in Wales is in some sort of systemic melt-down similar to the situation in Mid Staffordshire NHS Foundation Trust. The OECD review shows no evidence to support this denigration of the Welsh health service.

How the planning system is working.
In stating that all of the UK shows an improving picture, there are still a number of areas where the NHS does need to do better. This applies in different measure across all of the four administrations not least in Wales.

The OECD Review reports that Wales no longer operates an internal market but uses a “planned” system underpinned by the principles of “prudent health care”. While the prudent health care principles give an important sense of direction to the Welsh NHS, the under-performance of health boards linked to an imbalance in favour of local autonomy means that there is room for improvement in planning health care delivery.

A greater sense of national purpose is needed which could be achieved by butressing the prudent health care approach with a clear action plan and by strengthening the use of the three year Integrated Medium Term Plans (IMPT).

Inequalities and primary care.
Welsh Health Boards are still adjusting and learning about their new planning role. The Review believes there is a need to give an increased emphasis to primary care as part of a wider agenda of tacking health inequalities. Both these areas have been judged to suffer from relative neglect under the new “planing” regime. This could be a consequence of the relatively weak role that the primary care sector and patients have in the planning system e.g. there are no GPs on the Health Boards by right.

Developing the role of primary care clusters (PCCs), covering populations of 50-250,000, could have a significant potential in this regard. And the latest investment by the Welsh Government in PCCs is an important step forward. The clusters will provide opportunities to broaden the range of services and expertise that patients may access in a primary care setting. In addition the clusters provide a workable population base for more sensitive health care planning where the local expertise of front-line clinicians can be usefully captured by the planning system.

Patient power.
The OECD seems to take the somewhat ideological view that the lack of a market in health care in Wales  diminishes patient choice and influence compared to English. However, in making this point, it is acceptes that the geography and demography of Wales does not allow for a ready translation of the English experience.

Faced with this lack of “patient power” it recommends a strengthening of patients’ voices. More effort should be spent on capturing the patient experience. While coming at it from a different perspective, this is in line with the SHA Cymru view that we should “ use the visible hand of public accountability to improve standards rather than rely on the invisible hand of the market”.

Wales has retained its Community Health Councils as the patients’ voice within the NHS. It has been through a number of changes to improve its effectiveness down the years thought it is still debatable that they are fully fit for purpose. The Review recognises the need for CHCs to be more effective in the way they hold the service to account and articulate the views of patients. In improving its focus on these tasks there is a question as to whether CHCs add any value to NHS quality by continuing with their on-site inspection activities.

Collaboration rather than abusive rhetoric.
The four health administrations are doing things differently across the UK. New and innovative ways of doing things are being developed. The OECD acknowledges that this diversity provides an important learning opportunity that is being neglected by all four administrations. In part the lack of an agreed set of performance parameters and a lack of professional and political will is preventing this from happening.

Rather than using these differences as a cynical party political ploy, as the Tories have been doing, this form of engagement and collaboration seems a better way for the the National Health Service across the UK.

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Training some patients with chronic illnesses to become ‘expert patients’ can significantly reduce the need for outpatient and general practice consultations and give the patients a much appreciated high degree of self-management.  Patients already, through experience, have highly relevant expertise including knowledge of their body and symptoms, of their lifestyles, and of treatment preferences.

This short article uses the example of self-care by diabetic patients to illustrate the scope of potential change and it goes on to describe what expert patients could achieve in a major part of mental healthcare – that of bipolar affective disorder.

Diabetic patients typically self-manage their diabetes on a day-to-day basis – training and sheer experience teach them to become expert patients. Self-managing diabetic patients on insulin not only work out the needed dose of insulin, they carry out their own injections. And this self-medication is of course potentially lethal.

Another group of patients who could be trained to self-manage and self-medicate is people with bipolar disorder.  A general practice with 10,000 patients would have about 100 bipolar people.  Based on thirty years of self-managing his own bipolarity, the author  (PD) calculates the saving of GP and consultant time  if only 25 patients in  such a practice became self-managing,  Outpatient consultations would drop from about  4 a year per patient (total 100) to about one a year (total 25).  And visits to the GP about bipolarity would drop from about 6 a year per patient to one a year (from 150 total a year to 25 a year).

For many years the bipolar charity – Bipolar UK – ran very popular 3-day courses in self-management.  A few patients  went on also to self-medicate – they held a bank of drugs which had been prescribed by their psychiatrists or GPs.  Bipolarity is normally treated with a stabilizing drug such as lithium but when lows or highs occur antidepressants or antipsychotics respectively are also called for.

It might be thought that a serious illness such as bipolar affective disorder would be too complex for self-management but most ups and downs are similar and patients can be trained not only to spot early signs of trouble but also to deal with them promptly including with medication.  Also, people close to a bipolar person – such as a spouse or work colleague – can typically spot a significant change in the bipolar person’s mood before the bipolar person him/herself.  They can be encouraged to become an informed ‘helper’ whose observations are welcomed and found to be invaluable..

Once a bipolar patient has learned how depression affects them they can recognise another depression and judge when it needs treatment with an antidepressant.  Without self-medication the patient has to see the GP and get a prescription – which may take 10-14 days to see a particular GP – and all for a known purpose and outcome.  Patients resent such delays in starting treatment, and symptoms often worsen.

Patients who know they are bipolar and want to avoid mania can learn to recognise very early when they are going too high and when they need a course of an antipsychotic,  such as olanzapine. For instance, striking lack of sleep is common and serious – and calls for urgent attention.   A patient who has become frankly manic typically has no insight into how out of control they are.  They are beyond self-management.  The crucial point is that mania normally develops over ‘several days and sleep-deficient nights’ and impending trouble can be recognised early and dealt with as an emergency.

One of us is a GP (RD), and comments “I like the theme of self-management which is becoming ever more important but needs to be well thought through and evidence based. It really encourages participation between doctors and patients with doctors required to be well up on the patient’s perspective and experience.

“I believe that self management will become more and more of an issue in health care not only because of increasing demands on stretched services but also because technology has the potential to transform self-monitoring and self-management. However, it takes time, education and experience to work out how to do it well and safely.

Bipolar affective disorder is just one chronic illness for which greater patient expertise is relevant: there are several other appropriate chronic illnesses for which we need expert patients, for instance, obesity; alcohol dependency;  and COPD (chronic obstructive pulmonary disease).  For a relatively small initial investment of consultant, GP and nursing time (to assist in training patients) much clinical time would subsequently  be saved and many patients would be helped to enjoy much greater self-management for years. A win-win scenario.


Peter Draper,  Carol Draper and Richard Draper

(PD is a retired public health consultant, CD is a former NHS manager and PD’s wife, and RD is a GP and is PD’s nephew.)

 

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I seldom write about the NHS and its future. Too hot, too polarised, and frankly, I don’t know enough about national funding models to be clear on my views.

But when Partha Kar, a consultant diabetologist I like and trust asked me to give NHS Survival some advice and support, I thought it would be good to pen some thoughts.

NHS Survival is a new campaign group that wants to ‘save the NHS’, through “patients, the public and professionals working together”. Indeed, it has been bold enough to proclaim that it is already working in partnership with patients.

A quick skim through its original website (it is a bit better now) triggered my disdain. No patients included. But more of this below…

Here are five reasons why I will not yet support the campaign.

1. Too strident

For many years, I have been trying to shift my work towards a sense of true partnerships – a struggle for a born and bred activist. I firmly believe that patients can be partners in finding solutions and should be equal partners. That means modelling partnerships and moving beyond an ‘us and them’ mentality.

The NHS Survival clarion call seems to me to be akin to many other calls to save the NHS – from evil government plans, from mafiosi-like corporate ventures – from ‘the other’. It frames the NHS as victim to perilous forces. The (dare I say it, ‘childish’) tone is set, the attitude strident. I do not want to join sides in a battle. I want dialogue.

2. No survival without change

As some may have read on twitter, my view is that I will not support the status quo. All campaigns to save the NHS thus far have been built around the notion that we should defend ‘what is’ – that is, to all extents and purposes the power base of the current elite.

The NHS has, for 70 years, been led, controlled and largely influenced by clinical, managerial and political leaders – patients have no power (see my previous blog on the lack of patient involvement in policy). Claims of ‘public accountability’ seem vacuous when each ‘side’ claims to speak ‘on behalf’ of patients.

I will not support a campaign that puts survival first and patients second. Change comes first. Indeed, my view is that only by patients having true influence at all levels (nationally, locally and individually) can the NHS be sustained. If and when the campaign shifts tack, I may take it more seriously.

3. Patients included?

Patients on social media have questioned the ‘patients, public and professionals together’ tagline. Rightly so. All founding members of the campaign are health professionals. It is they that have decided the vision and purpose.

Now, many of them are saying it is their ‘intention’ to involve patients. And I am sure they mean it. But, as with many efforts to involve patients, the question has to be asked: Is it too late? And, how dare they lay claim to patient support without having done the legwork first. This makes me cross.

Only by engaging with patients, carers and the public from the beginning, can true co-design take place. For me to be involved, I would want to go back to first base, and question the very purpose of the campaign. I am not prepared to tick the box (again). This is a real question – if patients were to be involved, can we move the goalposts? For me to be involved then, how would I want them moved?……..

4. It’s about the money

When Partha and I have talked in the past, it has often been about how patients and professionals can work together and have serious conversations about what the NHS can and cannot afford. That’s where my interest lies.

I would have wanted a campaign like this to spearhead an honest debate about what is, and what is not, affordable; how patients can be partners in decisions at national and local level about funding. I had thought that to be the purpose of the movement. If that is (or was to have been) the intention, this seems to have been lost in the blood-lust for a fight about survival.

5. What to do?

The campaign makes great play about the need for an ‘independent’ Royal Commission. That sounds intriguing, I must say. It is probably where the campaign is on its surest footing – a tangible process and product.

In my experience, such processes require the involvement of patients. I have run several patient or citizen-led inquiries into prioritisation using ‘deliberative methodologies’ such as citizens juries. They are very useful tools for tackling complex and controversial issues, such as decommissioning and rationing.

In order to run such a process, the question needs to be clear. For me, a deliberative process that looked at key specific tricky issues, such as ‘whether and how can the NHS run a seven day service’ or ‘what can be done about A&E demand’ lend themselves to focus on pinch-points in the NHS.

Inevitably, such a specific focus would also lead to wider discussions that reveal ideological assumptions about the very nature of the service we want in the future. They might also be useful at a local level and help busy staff.

More useful I suspect than a vague and politically loaded question built around the assumptions of the current NHS Survivalists.

Leverage?

In summary, I am not joining NHS Survival yet. I am not persuaded that it can truly involve people like me. I am not willing to call for NHS survival, unless the NHS (and the campaign) changes tack significantly. If it were to work with patients to reframe its purpose, tone and processes… maybe.

Until then, it is interesting more broadly to note that the NHS Survival campaign seems to be yearning for patient-side credibility. For once, patients may have some leverage over a visible national policy initiative. How could we use that?

For more blog posts from David, see futurepatientblog.com

 

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I have to declare an interest. I once was a Community Health Council Chief Officer.  I left to manage services but I like to think that what I learned in those three years made me a better manager.

CHCs were made up of local people nominated by the Council, voluntary sector and regional health authority. Their duty was to received complaints and advocate for the patient, to visit local services and to examine and comment on planned changes in NHS services. As with all services the best were very good but there were a few less effective. Rather than raise the standards of the few, the government of the day abolished them. Now those functions are divided between PALS, HealthWatch and a remote Advocacy service.

PALS is the internal complaints department accountable to the hospital. It is a truism of all complaints system that complaints are best dealt with quickly and close to the problem. It is important that the person advocating for the patient is not the same person who is investigating the incident. PALs is able to do all that. It is also important that organisations learn from complaints and see them as an asset.  What is lost is the mechanism to translate the number or content of complaints into inspection and pressure to change the service. HealthWatch has lost those reports on complaints from the chief officer. I propose that PALS should be accountable to Health Watch and their resources should be combined to form a Patients Representation Service. The PRS should have a national member organisation which can set standards, share good practice and news and offer training for members and staff.

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Encouraging the maximum level of minimal participation

Colin Crouch Post Democracy, 2004

 INTRODUCTION

 Over the last thirty years free market ideologues have worked behind the scenes to dismantle the NHS (ref 1 ; ref 2). Thanks to their efforts, the NHS in England is now a full blown market, free to flourish unfettered by political interference and public scrutiny. Under the 2012 Health and Social Care Act,  the Secretary of State no longer has the fundamental duty to provide or secure a comprehensive health service. Clinical commissioning groups (CCGs) are responsible for commissioning and (rationing) services instead. And their duty is to commission services to ‘meet all reasonable requirements’ for their patients, not to provide communities with a comprehensive range of services (Ref 3).

Accountability arrangements that allow the ability of citizens and their representatives to hold their governments to account, by rewarding or punishing them, have the ability to constrain abuse of political power, as well as the potential to improve service delivery (ref 4). But under the Act, commissioners as well as providers of NHS funded services no longer answer to the Secretary of State. Instead, they are accountable to unelected, independent regulators[1]. And their role is to deregulate the NHS, to promote competition and private sector involvement.  As a result, market forces, not the Secretary of State, now determine which organisations provide NHS funded services, which providers survive and which providers fail and have to close. In this way, the 2012 Act detaches the government from responsibility – and blame – and, by removing the ability of citizens to hold the Secretary of State to account, radically reduces democratic accountablility in the NHS.

Less well recognised but similarly  significant is how the Act and related legislation removes the accountability of NHS organisations downwards, to local communities and their representatives. The NHS Plan in 2000 included a concordat welcoming the private sector into the NHS, Since then, successive health ministers have acted (i) to weaken accountability to local communities and their representatives (ii) to promote, instead, engagement with individual patients or ‘consumers’ and (iii) to limit the public scrutiny of NHS funded health care premises.  Such tactics are required to smooth the way for privatisation. Private firms are accountable to shareholders, not to local communities. And to safeguard shareholder profits, firms require protection from undue scrutiny. Weak accountability mechanisms, with no means of redress for citizens, are desired because they are not a threat to corporate interests. In fact, privatisation would not have succeeded without the loss of accountability to local communities and their representatives.

Between 1974 and 2003, Community Health Councils (CHCs) represented the interests of NHS patients in each district health authority.  Their performance varied from district to district. But, importantly, all had the statutory powers and  independence necessary, if they so wished, to keep their residents fully informed and to hold the local health service properly to account.

Many deserved the accolade:

CHCs are a jewel – that is not well understood….There is nothing like it in the rest of Europe, where it is the administrators and doctors who decide” Mikko Vienone, World Health Organisation European regional advisor (HSJ 23rd July 1998) .

CHCs were independent of health service management, free to keep the public fully informed and supported by officers who were accountable to them and not to the Regional Health Authorities, their paymasters. CHCs’ wide range of statutory duties and rights allowed them to form an overview of the whole of the health service in their area and to understand how patients might be affected, directly or indirectly, by proposals for change. Their statutory powers included (i) the right to information (ii) the right to visit and inspect health service premises (iii) the right to be consulted on any proposals for substantial variation or development of the health service in their area (iv) the right to refer disagreements with the health authority or concerns about the conduct of a consultation to the Secretary of State.  Their statutory duties were to (i) monitor the operation of health services across the health authority (ii)  provide the public with information (iii)  advise and support patients with complaints (iv) make recommendations for service improvements (v) hold meetings in public and publish an annual public report.

It was the ability of CHCs to keep patients and the public fully in touch with what was happening to local health services that contributed to their downfall. For example, the monitoring exercise ‘Casualty Watch’ whereby CHCs across England simultaneously recorded waiting times in the A & E departments of their local hospitals, and then published their findings, greatly annoyed health authorities and hospitals with the longest waiting times. In the late 1990s, a public row broke out when a Birmingham CHC informed its residents why it had decided to oppose plans for a new PFI hospital. The Regional Health Authority told  CHC members to either work within government policy or resign. And in Parliament,  a Birmingham MP led the first call for CHCs to be abolished. In response, the CHC proposed a motion calling for PFI to be abandoned in the NHS at the 1999 AGM of the Association of Community Health Councils for England and Wales (ACHCEW). It became  CHC national policy, with overwhelming support. The last straw, according to historian Charles Webster (ref 1) was probably the demand from ACHCEW that CHCs should play a central role in primary care and act as a bridge between the public and the New Primary Care Trusts. In retrospect, it was not surprising when, in July 2000, the NHS Plan was published  and CHCs learnt from a single sentence that they were to be abolished. Nor was it a co-incidence when shortly afterwards, in October 2000, the Department of Health (DH) announced plans for a concordat with the private sector. The removal of effective public scrutiny, had opened the door for the DH to encourage the private sector to play a central role in the NHS.

CHCs were finally abolished in 2003 (National Health Service Reform and Health Care Professions Act 2002 s.22). Their functions were broken up and divided between new statutory bodies – overview and scrutiny committees (OSCs), patients forums (PFs) , patients’ advice and liaison service (PALS), an independent complaints service and the commission for patient, public involvement in health (CPPIH) – none of which retained the CHCs’ ability to acquire and develop an overview of health services in their area. Only one, OSCs, had the right to be formally consulted on proposals for substantial changes to health services and the power to refer disputes to the Secretary of State.

OSCs are cross-party committees of elected councillors set up by Local Authorities with social services responsiblities (Local Government Act 2000 s. 21, as amended by s.7 of Health and Social Care Act 2001). OSCs did not and still do not have the right to  visit premises and inspect health services for themselves. Patient Forums were small committees based in NHS hospital and primary care trusts (NHS Reform and Health Care Professions Act 2002 s.15(1)). They had a range of statutory rights including the right to information and the right to visit NHS and private sector premises. But their powers were restricted to the trusts in which they were based. The CPPIH represented the views of Patient Forums to government. After three years Patient Forums and the CPPIH were abolished and replaced by Local Involvement Networks (LINks) (Government and Public Involvement in Health Act 2007) . These were replaced, in turn, by local Healthwatch and Healthwatch England, under the 2012 Act.

During the years of upheaval, patient representatives lost their collective voice as citizens with wide ranging statutory rights. Instead, they metamorphosed into consumers or rather, ‘consumer champions’ tasked with collecting information about patients’ experiences and reporting these to commissioners and providers in the expectation they would improve services  and hence patient satisfaction with the services on offer.  Local Healthwatch organisations inherited the power held by LINks to visit and inspect health service premises. But, their independence and freedom to speak out has been curtailed, culminating in the establishment of Healthwatch England as a subcommittee of the Care Quality Commission.

Running parallel with the above changes was a new duty placed on all health service bodies to involve and consult in an on-going way with health service users or potential users on (a) the planning and provision of services (b) changes in the way services are provided and (c) decisions affecting the operation of services (Health and Social Care Act 2001 s.11(1)).  Since then, the duty to involve individual ‘users’ has had greater emphasis in official documents than the duty to consult with democratically elected OSCs. This is probably because individual patients lack statutory rights and so cannot pose a threat to health service planners or to private sector interests. Health service managers dictate the terms of the engagements and individual patients have no means of redress, apart from judicial review, if they are refused information or if their views are disregarded.

The following paper reviews the current law regarding public consultation in the NHS in England and describes how the loss of political accountability and public scrutiny has gone hand in hand with privatisation.

  1. PUBLIC CONSULTATION -TWO LEGAL DUTIES

NHS bodies have two legal duties to consult when proposing changes to the  way local health services are provided, operated or developed. They are:

(A) The duty to consult with local authorities (LAs) on proposals for substantial development of or substantial variation in the provision of local health services.

(B) The duty to consult and involve patients and the public in an ongoing way, not just when major changes are proposed.

The duties apply to all relevant NHS bodies i.e.:

  • The NHS Commissioning Board (NHS England)
  • Clinical commissioning groups (CCGs)
  • Providers of health services commissioned by the Board, CCGs and the LA, including NHS trusts, NHS foundation trusts (FTs) and providers from the voluntary and private sectors.

NHS England and CCGs are responsible for conducting public consultation when they fund the services under consideration.

Consultations, according to case-law, must must be carried out properly, whether statutory or not i.e.

  • Be undertaken when plans are at a formative stage.
  • Include sufficient reasons / information to allow for an intelligent response.
  • Allow adequate time for an intelligent response.
  • Public responses must be conscientiously taken into account when the final decision is made (Ref: R v Brent ex parte Gunning (1985); (see also 5.1)
  1. CONSULTATION WITH LOCAL AUTHORITIES

2.1 Local Authority (Public Health, Health and Wellbeing Boards and Health Scrutiny) Regulations 2013: Part 4: Health Scrutiny by Local Authorities

2.11 Key Points

 

The regulations should be read in conjunction with statutory guidance, published in June 2014 (ref 6). The Local Authority Overview and Health Scrutiny Regulations 2002 and 2004 are no longer in force .

Under the 2013 regulations, OSCs when appointed can carry out a wide range of roles (regulation 28). The latter are called relevant functions  (regulation 20(1)) and  include:

  •  The review and scrutiny of any matter relating to the planning, provision and operation of the health service in its area (regulation 21).
  • The making of reports and recommendations to NHS bodies responsible for the services under scrutiny or to other interested parties e.g. local healthwatch (regulation 22). Recipients must respond within 28 days when the OSC requires a response.
  • Responding to consultations on any proposal for a substantial development or substantial variation of the health service in the LA area (regulation 23)
  • Requiring members or employees of NHS bodies to attend LA meetings and answer questions (regulation 27).
  • Under regulation 26, ‘responsible persons’ (i.e. relevant bodies (see above) plus GPs, and providers of other primary care services) have a duty to provide a local authority “with such information about the planning, provision and operation of local health services as it may require to discharge its health scrutiny functions”.

Information requests may include:

  • Financial information about the operation of a trust or CCG, for example budget allocations for the care of certain groups of patients or certain conditions.
  • Capital allocations for infrastructure projects, such as community facilities.
  • Management information such as commissioning plans for a particular type of service.
  • Operational information such as information about performance against targets or quality

Although local authorities have the right to request such information, they have no enforcement powers outside the formal consultation process and no power of veto over health service plans (see below).

2.12 Consultation Process (Regulation 23)

Regulation 23  dictates that :

  •  NHS bodies must consult with LAs on proposals for substantial development of or substantial variation in the provision of local services. Substantial is not defined but is expected to encompass reconfigurations, involving a final set of proposals; any configuration options within those proposals, as well as specific changes to individual services (Ref 7).
  • NHS bodies are not required to consult where a decision has to be taken quickly to avoid a risk to the safety or welfare of patients or staff NB: not for financial reasons. Consulting bodies must inform the LA immediately and give the reasons why they have decided not to consult.
  • A LA must inform the NHS commissioner or provider concerned, if it chooses not to respond to a consultation or make a recommendation.
  • A LA must submit  its response and any recommendations it may make by a date specified by the NHS commisioner or provider.
  • NHS bodies and LAs that do not agree about a recommendation, must take all reasonable steps to try to reach agreement.

The 2013 regulations affect the process of consultation in several important respects:

  • The regulations apply to LAs themselves as opposed to overview and scrutiny committees (OSCs), as previously.
  • A local authority is not required to appoint an OSC. They may choose to do so, however, or make other arrangements e.g. appointIng committees involving members of the public.
  • In consultations on substantial changes, a local authority will be allowed (under regulation 23) to delegate the power to refer objections to the Secretary of State, both to (a) OSCs, or (b) to joint scrutiny committees (where proposals affect services operating across LA boundaries}, but not to other committees.
  • The local authority as a whole has the power to make a referral when it has not delegated that power to an OSC or joint scrutiny committee. Many LAs fear this will lead to the politicisation of the referral process, if council members vote along party lines. However, other LAs already follow this procedure without encountering problems (Ref. 5).
  • The referral process is much more exacting than before. As a result, LAs or OSCs may be deterred from going down this route (see 2.13).
  • The 2014 Guidance stipulates that NHS organisations and Health and Wellbeing Boards[2] should engage with LAs or OSCs at an early stage, before plans are well developed. It argues that LAs or OSCs are, then, less likely to refer objections to the Secretary of State when consulted on a final proposal.

The aim of the guidance is to reduce the number of LA referrals to the Secretary of State and thereby the number of delays. However, LAs seem to be making the same number of referrals as before. Between February 2013 and May  2014, the SoS transferred 13 LA referrals to the Independent Reconfiguration Panel (see 2.14) compared with 10 transfers between January 2010 and January 2011.  It is a tribute to LAs that they continue to exercise their right of referral, despite of the exacting regulations.

2.13 Referral Process Regulation 23 (9)

 Where all attempts to reach a local resolution have been exhausted, a LA or OSC may refer a disputed proposal to the Secretary of State (SoS) for a decision. Formerly, in consultations between LAs and NHS Foundation trusts (NHS FT ) disputes were referred to Monitor, the FT regulator. Now all disputes are referred to the SoS.

Under regulation 23(9)  a LA can make referrals to the Secretary of State where:

  •  Consultation has been been inadequate in terms of content (information provided) or time
  • The reasons given by a NHS body for not consulting (see above) are inadequate
  • Where the LA considers the proposal would not be in the interests of the local health service.

Referrals reports  must now include:

  • An explanation of the proposal to which the referral report relates.
  • An explanation of the reasons for making the referral
  • Evidence in support of these reasons.
  • Where the proposal is referred because of inadequate consultation , the reasons why the LA or OSC is not satisfied of its adequacy.
  • Where the proposal is referred because there was no consultation for reasons relating to the safety or welfare of patients or staff, reasons why the LA or OSC is not satisfied that the reasons given for lack of consultation are adequate.
  • Where the LA or OSC believes that proposals are not in the interests of the health service in its area, a summary of the evidence considered, including any evidence of the effect or potential effect of the proposals on the sustainability or otherwise of the health service in the area.
  • An explanation of any steps the LA has taken to try to reach agreement with the relevant NHS body or health service provider.
  • Evidence that the LA has complied with the requirements which apply where a recommendation has been made.
  • Evidence that the LA has complied with the requirements which apply where a recommendation has not been made, or where no comments have been provided.

According to the 2013 guidance (Ref. 6), referrals to the Secretary of State should follow the terms of reference of the Independent Reconfiguration Panel (IRP, see below) i.e. whether a proposal would provide safe, sustainable and accessible services for the local population. However, the regulation that specifically requires a LA to consider financial sustainability (e.g. looking at opportunities a proposal offers to save money for use elsewhere in the health service) could become an obstacle for LAs or OSCs wishing to object to plans when the latter are based, primarily, on the  need to save money.

2.14 The Secretary of State’s decision (Reg 25)

On receiving a LA referral the Secretary of State may, where appropriate:

  • Make a decision relating to the subject matter of the referral, where the LA considers consultation has been
  • Make a final decision on a proposal, where the LA considers a proposal is not in the interests of the lthe local health service.
  • After making a decision, give directions to the Board (NHS England) as to how it should exercise its power to direct a CCG in relation to the proposal.

The  Board may direct a CCG to:

  • Consult (or consult further ) with the LA in relation to the proposal
  • Determine the matter in a particular way.
  • Take or not to take any other steps in relation to the matter.

The above directions conflict with the duty of NHS England to undertake formal assurance of proposals put forward by CCGs. In the formal assurance process, area teams help CCGs from an early stage to develop ‘robust, evidence–based plans that are underpinned by effective patient and public engagement ‘(Ref 7). However, under regulation 25, it seems NHS England could be compelled to instruct CCGs to alter plans which it has already assessed and approved.

The Independent Reconfiguration Panel (IRP)

The IRP is an advisory public body set up in 2003 by the DoH to review proposals for change on behalf of the Secretary of State (Ref 8). On receiving a referral from a LA and before making a decision, the Secretary of State may ask the IRP to review the matter and provide him with advice. After the IRP has made an initial assessment, the Secretary of State will decide which referrals the IRP should review in full.  The IRP also offers pre consultation advice and support to NHS bodies on the development of local proposals for reconfiguration or significant service changes – including advice and support for public engagement and formal public consulation.

In 2010, the IRP  published a paper, based on its own reviews, setting out seven main reasons why LAs make referrals to the Secretary of State (Ref 9). These include:

  • Inadequate community and stakeholder engagement in the early stages of planning change.
  • The clinical case has not been convincingly described or promoted.
  • Clinical integration across sites and a broader vision of integration into the whole health community has been weak
  • Proposals that emphasize what cannot be done and underplay the benefits of change and plans for additional services
  • Important content is missing from reconfiguration plans and limited methods of conveying information.
  • Health agencies caught on the back foot about the three issues most likely to excite local opinion – money, transport, and emergency care
  • Inadequate attention given to the responses during and after the consultation

NHS bodies must provide LAs with enough information to enable them to make an informed response to a consultation. If the information they require is refused, they have the right to  refer the matter to the SoS. In 2010 two strategic health authorities, London and Humber and North Yorkshire, based on DoH guidance, set out in detail what  constitutes ‘necessary information’ in a consultation. (Ref 10&11). LAs should be aware they have the right to such information before responding to a consultation.

2.15 Exemptions from duty to consult (Reg 24)

Regulation 23 , the duty to consult with LAs, does not apply to:

  • Any proposal to establish or dissolve an NHS trust or clinical commissioning group or to vary the constitution of such a group (unless they involve a substantial development or variation, as set out in reg 23(1)).
  • Any proposals contained in a trust special administrator’s report or draft report (NHS Act 2006 s. 65F or 65I)
  • Recommendations by a health special administrator on the action which should be taken in relation to a health special administration order (NHS Act 2012 s.128).

Special administrators

The 2012 Act provides for two special administration regimes (a) health special administration, applying to companies providing NHS funded services and (b) trust special admistration, applying to NHS FTs. The latter regime will eventually replace the special administration regime run by the DoH for NHS trusts, as the latter are expected to be licensed as FTs or merged with existing NHS FTs sometime this year.

Trust special administrators (TSAs), are called in by Monitor to manage insolvent foundation trusts.Their role is to draw up plans to enable trusts to clear their debts and to ensure the continued provision  of ‘commissioner requested services’ i.e. essential services, which commissioners and providers have previously agreed must continue to be provided locally to protect the patients of a failing provider. However, when a trust is under administration, it is the administrators, not commissioners, who are formally responsible for defining which services should continue to be provided (designated location specific services at this stage). They are expected to do this in consultation with commissioners (ref 12). However, when commissioners do not agree with a TSA’s recommendation but the NHS Board does, the TSA can submit its recommendation to Monitor  over the heads of commissioners (Health and Social Care Act 2012 s.176 (1076)).  The same process for identifying location specific services will eventually apply to private sector health special administrators.

The TSA must reach its decision rapidly. It has 100 working days in which to publish a final recommendation, with only 30 working days in that period allowed for consultation. (Ref 13).

Statutory Timescale for TSAs

Stage 1. Monitor lays order before parliamen for the FT concerned to be placed into trust  special administration. Monitor appoints TSA (insolvency practitioner)  Within 5 working days

Stage 2. TSA begins. Takes over the role of FT governors, chairman and board of directors  Within 45 working days

Stage 3. TSA has to agree draft recommendations with CCGs and NHS England; publish and provide Monitor with draft report containing recommendations for his action. Monitor lays draft report before parliament.  Within 5 working days

Stage 4. TSA must start 30 day consultation on draft report, including holding a meeting with staff or their representatives  and a separate meeting with other parties wishing to attend. TSA requests written responses from NHS England; CCGs; LAs and LA scrutiny functions e.g. OSCs; IRP; Local Healthwatch; Health and Wellbeing board and local MPs. TSA must hold separate meeting with NHS England and CCGs.  Within 15 working days of consultation ending

Stage 5. TSA agrees final recommendation with CCGs  and /or with NHS England and presents final report to Monitor. Monitor lays report before parliament  Within 20 working days

Stage 6.  Monitor decides what action it plans to take and notifies SoS

Stage 7. SoS vetoes action plan in exceptional circumstances

Stage 8. Monitor publishes notice of decision and lays it before parliament. Monitor implements proposal.

TSA’s recommendations are designed to enable trusts to clear their debts. The are not designed to meet the needs of patients. Reconfigurations outside the special administration process (and not subject to a statutory timetable) commonly take several years to formulate and implement (Ref 14). According to NHS England (ref 7):

“Developing, explaining and implementing proposals takes time, collective effort and energy…..

The stronger proposals are those developed collaboratively by commissioners, providers, local authorities and patients and the public. This will ensure that proposals are sound, evidence based, in the best interests of patients, will improve the quality and sustainability of care and that people affected will be involved and their feedback will be listened to and acted upon’.

 The freedom  of TSAs to ignore the needs of patients in this way has serious implications, not only for the care of patients, but for the wider health economy. It could also leave the SoS open to legal challenge if he/she approves a TSA’s plan that demonstrably increases health inequalities (2012 Act s.4) or is not supported by evidence (2012 Act s.6).

Clause 118 of the Care Act

Clause 118 in the Care Act gives TSAs new powers to reconfigure, close or transfer services from a neighbouring  trust in order to balance the books of a failing trust (Ref 14). The new clause  follows the failure of the SoS to win high court approval for his decision to support a TSA plan to close the A&E department of Lewisham  Hospital in order to balance the books of South London Healthcare Trust . Clause 118 was approved in parliament on March 11th 2014.

Before the vote on March 11th, the government agreed to publish new guidance to the effect that TSA plans should have the approval of local CCGs before they are implemented. The amendment is very likely to have won votes for clause 118, especially as it could also bring back the likelihood of public engagement. However, publishing guidance, rather than amending the law, still leaves the door open for TSAs and NHS England to continue as before. All NHS organisations (including NHS England) must have regard to statutory guidance. But, ‘having regard too’ does not mean they are bound to follow the guidance in every case. Rather they must have good reasons for not following it.

On May 7th, following a campaign by the pressure group ’38 Degrees’, the government finally introduced an amendment to the Care Bill, during its passage through the House of Lords. The amendment to clause 118, submitted originally by Baroness Finlay, gives the CCGs of any affected trust, as well as the CCGs of the trust under administration, the right to engage with the TSA and respond to its draft proposals. It also gives the CCGs of an affected trust 20 days in which to consult the public, if they so wish, when the final TSA report recommends changes to the services at their hospitals. The amendment does not cover the possibility that the TSA and CCGs may not be able to reach agreement. If they cannot, NHS England will have the final say, as before.

2.2 Duty of NHS FTs to consult  with local authorities

The coalition government decided that all NHS trusts should achieve foundation trust status in 2014 (Ref 13). The following information will then apply to all trusts in the public sector.

Prior to the 2012 Act, regulations required foundation trusts to consult with OSCs when:

  • They proposed to make an application to Monitor, the independent FT regulator, to vary the terms of their authorisation and
  • Where the application, if successful, would result in a substantial variation in the provision of “protected goods and services” i.e those a FT must provide under the terms of its authorisation (Communities Health and Standards Act 2003( NHS Foundation Trusts Order 2004).

Under the 2013 scrutiny regulations, commissioners, i.e. CCGs or NHS England, are responsible for carrying out consultations when they fund the services under consideration. When a provider has a development or variation “under consideration”, therefore, it will need to inform commissioners at a very early stage so that they can begin to consult as soon as possible.

In April 2013, following the 2012 Act, Monitor became the economic regulator for all providers of NHS funded care, including those from the private sector. Now foundation trusts, along with all other providers of NHS care, apart from NHS Trusts, are issued with a licence that sets out the terms under which they must operate. NHS FTs authorised before 2013 were automatically issued with a licence and their ’protected goods and services’ designated ‘commissioner requested services’ (CRS). Commissioner requested services are those commissioners define as being essential i.e. services that should continue to be provided locally if any individual provider is at risk of failing financially (Ref 12).

There is no formal requirement for CCGs to involve the public in deciding whether a service should be classified as a CRS or not. However, if a service is designated a non-CRS, it does not mean that patients do not need or value the service. Rather, commissioners believe suitable alternatives exist if the current provider stopped providing that service. Moreover, commissioners can change the designation of a service as circumstances change. For example, not all ‘protected goods and services’ are expected to retain their CRS status beyond the initial stage (Ref 12). The number of services categorised as ‘non-essential’ will also grow as new providers are encouraged to enter the market .

The licence requires NHS FTs to continue to provide ‘commissioner requested services’ and not to make material changes to the way in which they are provided without the agreement of commissioners. It follows that providers could change or stop providing non-commissioner requested services without the agreement of commissioners and, also, without public consultation. This is because changes to non-essential services, by definition, would not qualify as substantial and, therefore, would not trigger a requirement for providers or CCGs to consult  with LAs/OSCs. As more private companies enter the NHS,  more and more services could be defined as non-essential and, therefore, subject to change or closure over the heads of elected councillors and local people.

2.21 Role of NHS FT Governors

Boards of FT governors are responsible for holding non-executive directors to account individually and collectively for the performance of the Board of Directors. They must act in the best interests of their NHS Foundation Trusts and represent the members of the trust as a whole and the public. (Ref 16).

The 2012 Act provides FT governors with new duties and powers to approve significant transactions, mergers and acquisitions etc . For example:

  • Significant transactions must be approved by the majority of governors as well as the Board of Directors. Approval means that at least half of the governors voting agree with the transaction. The FT may include a description of ‘significant transactions’ in it’s constitution. They could include contract changes above a certain value (2012 Act s.167).
  • The council of governors must approve an application by the trust to enter into a merger, acquisition, separation or dissolution. In this case approval means at least half of all governors agree with the application.
  • The governors must decide whether or not the trust’s non-NHS activity interferes with its principal purpose, namely to provide goods and services for the health service in England. The council of governors must inform the Board of Directors of its decision.
  • Governors must approve any proposed increases in private patient income of 5% or more in any financial year. Approval means at least half of the governors voting agree with the increase. Governors must feel confident that the board has reached its decision effectively and with due regard to the interests of trust members and the public before giving their agreement. Governors are not expected to withold their consent on unreasonable grounds. When the final decision has been taken and once the chair has confirmed the decision is not confidential, the council of governors should inform the trust members and the public that the trust has decided to increase the intake of private patients.
  • Governors have a general duty to represent members of the trust and the public. But, unlike LAs, they have neither the power nor the means to do so. Governors are either chosen by a very small electorate of members, after putting their own names forward, or are staff representatives or stakeholders appointed by the FT. How they seek the views of their members and the public, in addition, is left up to them. Guidance from Monitor suggests this could include sharing information on the website, surveying their members, holding ‘drop in days’ or working alongside representatives of Healthwatch. Such methods could, perhaps, enable governors to act as ‘consumer champions’ for patients undergoing treatment at their hospital. They would not allow governors to determine how the policies of their FT are affecting the viability of other hospitals in the area. And the duties on FT governors do not increase public scrutiny. Governors do not have the right to inspect the premises of their own FT or the services it provides or a duty to meet patients and conduct quality reviews

Democraticically elected Local Authorities or OSCs do not have a formal role in the approval of significant transactions, mergers, acquisitions, dissolutions or, joint ventures of a FT with the private sector. Yet all of these can have a significant impact on trusts operating and risk profiles, according to Monitor . Between 2009 and 2012 the NHS Co-operation and Competition Panel reviewed 12 potential large scale mergers on behalf of Monitor and found that none would breach the trust’s authorisation, if implemented .

3 CONSULTATION WITH PATIENTS AND THE PUBLIC

3.1 Duty on providers and commissioners

Section 242(1B) of the NHS Act 2006, as amended by the Local Government and Public Involvement in Health Act 2007 (LGPIH Act) came into force on 3rd November 2008. It provides that :

Each relevant English body must make arrangements, as respects to health services for which it is responsible, which secure that users of those services, whether directly or through representatives, are involved (whether by being consulted or provided with information or in other ways) in-

  • The planning of the provision of those services.
  • The development and consideration of proposals for changes in the way those services are provided.
  • Decisions to be made by that body affecting the operation of those services.

  Subsections (b) and (c) need only be observed if the proposals would have an impact on:

  • The manner in which the services are delivered to users of those services or the range of health services available to those users.
  • The reference to the delivery of services is to their delivery at the point when they are received by users.

Formerly, 242(1B)  applied to Primary Care trusts and to Strategic Health Authorities  before they were abolished. The legal duty  under s.242(1B) now applies only to providers of NHS funded services i.e NHS FTs, NHS trusts and all independent sector providers.

The 2006 Act, as amended by the 2012 Act, makes similar provisions for public involvement and consultation by the Board (s. 23(13Q)) and by CCGs (s.26 (14Z2)).  For example, s. 23(13Q ):

(1) Applies to any health services which are or are to be provided pursuant to commissioning arrangements made by the Board (NHS England).

 (2) The Board must make arrangements to secure that individuals to whom the services are being provided or maybe provided are involved (whether by being consulted or provided with information or in other ways)-

  •  In the planning of the commissioning arrangements by the Board.
  • In the development and consideration of proposals by the Board 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 individuals or the range of health services available to them.
  • In decisions of the Board affecting the operation of the commisioning arrangements where the implementaion of the decisions would (if made) have such an impact.

The references in subsection (2)(b) is to the delivery of services is a reference to their delivery at the point when they are received by users.

Section 26 (14Z2)  has identical wording to s. 23 (13Q,)  but replaces ‘Board’ with ‘Clinical Commissioning Group’.  CCGs are required to include in their constitution the  principles and arrangements they will make under subsection 2.

A key difference between the two pieces of legislation is that, under the 2006 Act s.242(B), the duty to consult can be met by involving patients directly or through their representatives whereas under s.13Q and s.14 Z2 the duty to consult applies only to involvement with service users or potential users. The difference is not yet reflected in guidance on public involvement published by NHS England in 2013 which continues to refer to carers and representatives alongside users (Ref 7).  But it could potentially be used to prevent pressure groups or charities taking part in decision making or collective legal action such as judicial reviews (see 6.2).

3.12 Duty on commissioners to report

Under section s 26 (14Z15) of the Act, each CCG is required to publish an annual report on how it has discharged its duties, in particular, how it has involved users under s.14Z2 (see above). Each CCG must consult with its relevant Health and Well Being Board in preparing the report and hold a meeting to present the report to members of the public. NHS England will provide guidance for CCGs in time for reporting on the year 2015/16.

NHS England must also produce an annual report at the end of each financial year, including a report on how it has involved users under s. 23 (13Q) (see above).  The annual report will be laid before parliament and sent to the SoS. The SoS will respond to this with an assessment of the Board’s performance during the year.

3.2 Patient / Public involvement in Practice

The duty to involve users or potential users under 242(1B), 13Q and 14Z2 is a legal requirement  whether a LA   is consulted or not. It covers a whole range of activities, from  providing information, to seeking the views and experiences of users about specific services or conducting large  public consultations on major changes. Managers are advised in guidance (see below) to involve users from an early stage and choose methods proportionate to the impact plans would have if implemented .

In planning reconfiguration strategies, commissioners also are expected to engage with staff, patients and the public in a continuous way. After completion of a consultation on the strategy, commissioners can decide to consult again on specific configuration options. The latter process could include 12 weeks of  formal consultation, although under the Cabinet Office principles, a range of approaches could be employed  ( Ref 15).

Public/patient involvement is not a democratic process. Managers decide:

  • When to involve users
  • What level of involvement to use
  • Which users should be involved
  • What they should be told
  • How their views will be used
  • ow feedback will be provided

Unlike elected councillors, patients are not accountable to the wider community. They do not have a statutory right to information, other than through the Freedom of Information Act (see 5.22) and do not have the right to refer objections to the SoS if consultation has been inadequate or the proposals are against the interests of the local community.  Their only right of appeal, if they have been directly affected by an unlawful act or decision of an NHS body, is to  seek a judicial review through the courts (see section 6, below) . Despite the above, it is important for  campaigners to engage with NHS planners whenever the opportunity arises, not just to give their views as consumers but to find out and publicise what changes are being planned for the future.

3.21 Public involvement in Procurement

 3.22 DH Statutory Guidance October 2008  (Ref 13)

Nothing in legislation explicitly directs commissioners not to involve patients and the public in the procurement stage of commissiong. However, under s.242 (1B), s.14Z2 and s.13Q, above,  NHS providers and commissioners are not required to involve the public, where a proposal does not affect the way a service is delivered or the range of services available at the point of delivery. Guidance (Ref 17) published in October 2008 states, with respect to 242 (1B):

‘There is no requirement to involve users where proposals for change or a decision to be made by an NHS organisation, for example a change of provider, does not result in changes to the service that affect the way in which that service is delivered or the range of services available’

Thus NHS organisations are free not to involve or consult the public when putting existing services or reconfigured services (following formal consultations) out to tender.  As a result, when competition law was imposed on the NHS in April 2012 (NHS Act 2012 s.75) a period of unprecedented fast track NHS privatisations occured, over the heads of patients and local communities. For example:

On March 27 the Health and Social Care Bill received Royal Assent and became law.  With the ink barely dry on Her Majesty’s signature, the carving up of the NHS has begun. Virgin Care has won a £500 million contract to provide community services across Surrey …. and began running these sevices on 1st. April. What real choice did the people of Surrey have in who provided their community health services? The answer is none…. The choice was made by unelected, unaccountable bureaucrats who use “public consultation” as a fig leaf for fundamentally changing the nature of how healthcare is delivered.” (Max Pemberton,  The Telegraph, 9th April 2012 ‘Healthy competition in the NHS is a sick joke).

In 2012, in just seven days, community services worth £262m were put out to tender and privatised under  the new ‘any qualified provider” policy, without the public having a say.  In a quarter of the cases, PCTs stated they had no plans to tender before the government instructed them to do so (Guardian 4th October 2012).

By September 2013, services across the board, from maternity services to end of life care, including whole hospitals were in the hands of private firms. (Ref 18).

More recently NHS England turned its attention to privatising local enhanced services (LES) provided by GP practices. On 1st  January 2014, CCGs were instructed to put all their LES out to tender or procure them under any qualified provider (AQP) by April 2014, unless they  could prove the services could only be offered by a single commissioner. Figures suggest contracts worth a total of £18.6 m could be opened up to the markets with some GP practices losing as much as 10-15% of their income. Services such anticoagulant clinics, minor surgery and dementia support are all under offer without patients having a say (Ref 19).

3.23 NHS England Guidance 2013

The 2012 NHS Act did not amend or remove the duty on NHS trusts and NHS funded providers to consult with patients or their representatives under s.242(1B) of the 2006 Act. Instead, it has amended the 2006 Act to impose similar duties on NHS England and CCGs (see 3.1). So it seems reasonable to assume that the 2008 guidance would still apply, including the freedom it gives NHS organisations not to consult when offering existing services up to different providers. However in September 2013, NHS England published new statutory guidance[4] for CCGs, which included their duty to involve  patients and the public in the various stages of  commissioning, including procurement (Ref 20).

The 2013 guidance ‘Transforming Participation in Healthcare’ includes a diagram or ‘Engagment Cycle’ which describes key stages in the commissioning process for public participation. These are:

  • Community engagement to identify needs and aspirations
  • Public engagement to develop priorities strategies and plans
  • Patient and carer engagement to improve services
  • Patient and carer engagement to monitor services and
  • Patient, carer and public engagement to procure services (see overleaf)

The Engagement Cycle was originally developed 6 years ago by InHealth Associates on behalf of the DoH and Croyden PCT. Ironically (see below), it was designed to be used  by CCGs wishing to move “beyond ‘tick box’ engagement.”

The above diagram and text was downloaded from the internet in January 2014. By March 2014, the text had been re-drafted, apart from the points under ‘Contracts should specify’, which remained unchanged. Significantly, it no longer states that people should be directly involved in decisions about who provides services. Instead it refers to the need for clarity about patient representation on panels – their roles, terms of reference and support and training. The Cambridgeshire consultation, described below, illustrates how this guidance works in practice.

At the beginning of 2014, Cambridgeshire and Peterborough CCG was facing  a judicial review for refusing, on the grounds of commercial confidentiality, to release tender documents relating to a £800 million contract for community, mental health and hospital based services (Ref 21).

Law firm Leigh Day, acting for the campaign group ‘ Stop the NHS Sell Off’, claimed the CCG had acted unlawfully by  preventing ‘proper patient involvement’  when it refused to publish the tender documents. The letter before action identified four areas where the CCG had failed to meet its obligations, including failure to take into account the 2013 guidance.The four areas were:

  • It has breached its duty to have a patient involvement strategy.
  • It has breached its duty to have a procurement strategy.
  • Its constitution did not fully reflect the extent of its requirements around engagement.
  • It has not taken into account NHS England’s guidance ‘ Transforming participation in health and care’.

The CCG, in response to the letter before action, denied it had acted unlawfully but nevertheless released the tender documents in January 2014, without going to court.  The tender documents and service specifications issued at the invitation to tender stage were found by campaigners to be so lacking in detail that they effectively gave bidders the freedom to do what they wanted.

The CCG later published the Memorandom of Information (MoI) for bidders on its website,(www.cambridgeshireandpeterboroughccg.nhs.uk) In it the CCG stated that  it did not intend to specify in detail how its desired outcomes should be achieved, preferring instead  for its ‘vision’ to be realised through the procurement process, by encouraging bidders to develop ‘innovative delivery models’. Thus, the CCG  abdicated responsibility for specifying how to meet the needs of its patients. Instead, bidders were asked to design services that would deliver the outcomes required by the CCG. Improved outcomes would then be aligned with financial incentives for the successful bidder.

Strangely, bidders were expected to comply with NICE guidance on safe staffing levels but this is not due to be published until the end of 2014.

3.24 Cambridgeshire and Peterborough CCG Consultation

On March 17th 2014, Cambridgeshire and Peterborough CCG began a three month public consultation on the procurement of a provider for its multimillion pound contract. (Ref 22). The CCG’s aim was to seek the views of users and residents on initial proposals put forward by four shortlisted bidders. The bidders would take the views of the public into account in drawing up their final proposals. And a  team of CCG assessors would use the public feedback to evaluate each bid before selecting a preferred bidder. The assessors included:  GPs, patient representatives, LAs, and specialists in areas such as information technology. The patient ‘representatives” were  members of the Patient Reference Group, a subcommittee of the CCG governing body previously involved in the short listing process. The wider community was not involved.

The list of shortlisted bidders was published only on the CCG’s website, not in the consultation document.They included:

  • Accord Health (Interserve with Provide, formerly Central Essex Community Services and North Essex Partnership NHS FT as mental health lead)
  • Care for Life ( Care UK with Lincolnshire Community Health Services NHS Trust and Norfolk Community Health and Care NHS Trust)
  • Uniting Care Partnership ( Cambridgeshire and Peterborough NHS FT with Cambridge University Hospitals NHS FT).
  • Virgin Care Ltd

According to the Memorandum of Information, available on the CCG website alongside other technical documents, the preferred bidder or ‘lead provider’ will be awarded a 5 year contract with the option to extend it for a further 2 years. It will be responsible for planning and providing community services for adults and older adults and for holding the budget for buying unplanned hospital services and mental health services for older adults and palliative care. It will be responsible for 20,000 staff transferred from Cambridgeshire Community Services NHS Trust (CCS) which may be dissolved.[5] The CCS currently delivers services from 50 properties, including 5 community hospitals, with a total of 102 beds. The MoI states that bidders will not be compelled to continue to use the buildings.

The consultation document

In the consultation document, the CCG’s  stated its ‘vision’ was for ‘older people’s health care and adult community services to be better organised around the needs of patients’. It wanted to see:

  • More joined up care
  • Better planning and communication between patients, carers and professionals
  • More patients to be supported to remain independent
  • Fewer emergency hospital admissions and long stays in hospital

The public were invited to give their views by ticking boxes in a questionnaire drawn up by a market research firm, mruk research which was also responsible for analysing  the responses.  For example, residents were asked to say to what extent they thought the CCG’s ‘vision’ would be successful in achieving the four outcomes listed above. They then had the choice of ticking 5 boxes labelled: strongly agree, agree, neither agree or disagree,strongly disagree or don’t know. They were also asked to give their views on annonymised proposals, put forward by each of the bidders and listed in categories, by ticking boxes in each section to indicate which was the most and least important proposal to them.

Few would disagree with the desirability of the above outcomes. But the consultation document was virtually devoid of facts or planning information and, in any case the questionnaire did not provide respondents with the opportunity to express an informed opinion. Missing information included:  needs and activity analyses; a financial analysis and a risk analysis; issues around accessibility and transport; the future availability of geriatricians; current and proposed staffing levels; implications for the 20,000 community staff who would be transferred to a new provider; pay and conditions for new staff; drawbacks of having a single lead provider (in contrast to large number of drawbacks listed for the current provision); the impact the proposals could have on the sustainabiltiy of hospital services in the area;  the future of Cambridgeshire Community Services NHS trust, and, if this was dissolved, which organisation would take responsibility for its buildings  and 102  rehabilitation and intermediate care beds; the fact that neither Cambridgeshire County Council nor Peterborough City Council wished to include social care funds in any new pooling arrangement or to integrate social care staff with health provision; Respondents, instead, were directed to detailed technical information on-line, designed to be read by experts, not the general public

The consultation document said  services would not be cut or delivered in different locations.  Yet, according to the Memorandum of Information, a lead provider would not be compelled to use any of the existing buildings. The consultation document highlighted current difficulties of trying to achieve service integration with multiple block contracts. It did not mention that the lead provider would also be required to subcontract in turn. It did not disclose the identity of the four  bidders or reveal that the process  could leave responsibility  for buying unplanned hospital care, mental health services and palliative care in the hands of a profit-driven private firm.

In 2010, the coalition government introduced four clear tests new reconfigurations must demonstrate before being approved (Ref 36). These are:

  • Strong, public and patient engagement
  • Consistency with current and prospective need for patient choice
  • Clear clinical evidence base
  • Support for proposals from commissioners

In the Cambridgeshire consultation, the CCG said it had no choice but to put the contract out to tender as it was legally obliged to do so. Then it cited financial and demographic pressures but only one piece of research – from the Kings Fund – as the reasons for change. The CCG consultation document, as discussed, did not facilitate strong, public and patient engagement. Yet strangely, NHS England would have approved the consultation document with all of its inadequacies, as part of its duty to assure CCG proposals for change (see 2.14).

The group ‘Stop the NHS sell-off’ continued to campaign during the consultation period, attending public meetings and collecting 5,500 signatures on a petition opposing NHS privatisation. It was vindicated at the end of September when the CCG awarded the contract to the NHS bidder ‘Uniting Care Partnerships’. The exercise cost the CCG £1million. Campaigners are calling for a public enquiry into why the CCG embarked on such a process in the first place. They are also demanding to know why it refused to allow Cambridgeshire Community Services Trust to bid for the contract when it was in line for a ‘Trust Provider of the Year’ award and judged one of the best NHS employers in the country (Ref 23).

3.3 Public involvement in Tendering

In December 2013, NHS England issued further guidance for CCGs on the planning of major service changes and reconfigurations. (Ref 7). The document, like most official documents,  stresses the importance  of patient and public involvement in the planning process. It then states:

“ It is for commissioners to decide how best to secure services that meet patients needs and improve the quality and effectiveness, including whether to use choice and competition. Commissioners need to make a balanced judgement on a mix of factors ….such as whether there are a range of providers.However, patients and their interests should always come first and nothing in legislation requires commissioners to take a decision in respect of competition issues that conflict with this

Thus CCGs, alone, decide whether or not to put services out to tender. Patients and the public do not have a say even though their interests are supposed to come first.

Commissioners have a duty to put contracts out to tender when not to do so would be against the interests of patients (Procurement, Patient Choice and Competition Regulations 2013). But CCGs (including Cambridgeshire and Peterborough CCG) say they are legally obliged to put all service contracts out to tender whether they wish to do so or not (Ref 24). Their assertion runs counter to the guidance from NHS England and to the regulations, which suggest CCGs have a choice. In fact, there is little evidence, either nationally or internationally, to support the premise underlying the 2012 Act, namely that choice and competition benefits patients.

  • A review by the Parliamentary Labour Party Health Committeee ‘An Inquiry Into The Effectiveness of International Health Systems ‘ (HSJ 20 May 2014) concluded that markets in healthcare increase inequalities and that competition can “impede quality, including increasing hospitalisation rates and mortality”. As a result the report called for the repeal of the H&SCAct 2012 .
  • An attempt between NHS England and Monitor to draw up a new Choice and Competition Framework was put on hold in September 2013 because they could not find enough evidence to show how competition benefited patients (Ref. 25).  At a board meeting of NHS England in September 2013, the policy director, Bill McCarthy said:

“We’re committed to being a system that works on evidence and in this area, even taking from international evidence, the direct evidence of where best competition and choice works to improve outcomes is fairly limited”

Chairman Malcolm Grant added:

“It is so important that we get away from ideological preconceptions and take a much more pragmatic focus around the needs of patients”

The dispute remained unresolved in March 2014, suggesting the future of the project may be uncertain. According to the HSJ, new policy owners in Monitor consider their guidance should be the key resource for commissioners to understand choice and competition, not the framework with NHS England  (Ref. 26).

The lack of evidence for the view that competition benefits patients robs the coalition of the official fig leaf for its ideological agenda. The SoS, himself, stripped the phrase ‘putting patients first’ of its significance by rejecting the main recommendation of the Francis report into failures at Stafford hospital. The Francis recommendation was to rewrite the NHS Constitution to make it explicit that ‘patients come first’. A government appointed panel, chaired by health minister Norman Lamb, helped the SoS to reject the recommendation. Alongside Norman Lamb, the panel included Monitor chair Stephen Thorton and representatives of Virgin Care (Ref 27).  Thus competition and private interests appear to  carry more weight with the government than the interests of patients, despite its protestations to the contrary.

  1. HEALTHWATCH ENGLAND (NHS Act s.181) & LOCAL HEALTHWATCH (2012 NHS Act s.182-189)

4.1 Background

The  NHS Act 2012 established (i) Healthwatch England, a national body and (ii) Local Healthwatch organisations, (to replace Local Involvement Networks ) as the new “consumer champions” for patients, service users and the public.

  • Healthwatch England began operating on October 1st 2012, as a subcommittee of the Care Quality Commission (CQC) – the body responsible for inspecting hospitals, care homes and care services. Healthwatch England operates on behalf of the CQC but must not have a majority of CQC members on its committee.
  • Local Healthwatch organisations started in April 2013. They are not statutory bodies but have statutory duties and powers similar to those of Local Involvement Networks (LINks). Local Healthwatch organisations are commissioned by upper tier and unitary local authorities. They are accountable to the local authority but funded nationally.

Various bodies can bid to provide Healthwatch organisations e.g. community interest companies, charities or social enterprises. Unlike OSCs, local Healthwatch committees can “enter and view” public or private sector premises providing health and social care services [6].

4.2 Healthwatch England  (H&SCA 2012 s.181)

The functions of Healthwatch England are:

  • To provide leadership, support and set standards for Local Healthwatch organisations.
  • To highlight national issues and trends in order to influence national policy. It will collate and provide information to the Secretary of State for Health, the Care Quality Commission, NHS England, Monitor and local authorities about (a) the views of people regarding their need for and experiences of health and social care services and (b) the views of Local Healthwatch organisations and of other persons on the standard of provision of health and social care services and on whether or how the standards could or should be improved.
  • In performing their functions, Healthwatch England must have regard to such aspects of government policy as the Secretary of State many direct.
  • The Secretary of State can give a direction to Healthwatch England or to the CQC if he/she considers they are significantly failing to fulfill their duties.

4.3  Local Healthwatch Organisations (H&SC Act 2012 s. 182)

The functions of Local Healthwatch organisations are:

  • Providing advice and information to users and the public about access to services and support for making informed choices.
  • Providing NHS complaints advocacy (LAs will continue to manage complaints about social care).
  • Gathering views and understanding the experiences of people who use services, carers and the wider community.
  • Making people’s views known to Healthwatch England and providing a steer to help it in carrying out its role as national champion
  • Recommending investigation and special review of services via Healthwatch England or directly to the Care Quality Commission.
  • Promoting and supporting the involvement of people in the commissioning and provision of local services and how they are scrutinised.
  • Enabling people to monitor/review the commissioning and provision of local care services
  • Obtaining the views of people about their needs for and experiences of local care services and make those views known to those responsible for the commissioning and provision of local care services.
  • Making reports and recommendations about how those services could or ought to be improved to ‘responsible bodies’ : i.e. NHS trusts; NHS foundation trusts; NHS England; CCGs; LAs; or a person prescribed in regulations (i.e. primary care providers).

4.4  Healthwatch Regulations

Regulations laid in December 2012 (The NHS Bodies and Local Authorities (Partnership Arrangements, Care  Trusts, Public Health and Local Healthwatch) Regulations part 6 2012) make provision about:

  • The criteria that bodies will need to meet in order to be contracted as local Healthwatch organisations
  • The contractual arrangements between (a) the Local Authority and local Healthwatch and (b) local Healthwatch and its contractors.
  • The duties on commissioners and providers to respond to reports, recommendations and information requests and their duty to justify their decision if they do not intend to act on recommemndations or provide information.
  • Referrals to local authorities or scruntiny committees (OSCs) and the duty on them to acknowledge referrals from local Healthwatch..
  • The duties on service providers to allow entry to local Healthwatch representatives

The regulations lay out in detail what Healtwatch committees can and cannot do.

4.41 Key Points

Regulation 36 requires local Heathwatch committees to act independently of political parties, think tanks and campaigns. They must not:

  • Promote or oppose changes in any law applicable in the UK in the EU or elsewhere or the policy adopted by any governmental or public authority in relation to any matter (36 (1a)).
  • Provide or affect support for a political party or political campaign or influence voters in relation to any election or referendum (36 (1c).
  • Undertake campaigning and policy work unless it is based on evidence and incidental to its core activities (Reg. 36 (2).

Regulation 38 stipulates that local `Healthwatch organisations must include provision for the involvement of lay persons and volunteers in their governance bodies.

Regulation 42  allows only authorised representatives of a local Healthwatch to enter and view and observe the activities on  premises owned or controlled by a service provider.

Regulation 44 requires a recipient of a Healthwatch report or recommendation to respond within 22 days or, in certain circumstances, in 30 working days to explain what action it proposes to take or why it does not intend to take any action in respect of the report or recommendation

Regulation 46 requires a local Healthwatch to refer reports of social care matters to the LA or OSC . The latter must respond within 20 working days.

4.42 Limitations of local Healthwatch Committees

  • A prime role of local Healthwatch committees is to gather evidence from the views and experiences of patients and members of the public and to feed the evidence in written reports back to commissioners and providers. A Healthwatch committee has no means of direct redress if its reports or recommendations are not acted upon. But it can recommend investigation and special review of services via Healthwatch England or directly to the Care Quality Commission.
  • Healthwatch committees are gagged from speaking out against any law in the UK or the policy adopted by any governmental or public authority. Governmental authority includes any national, regional or local government in the UK or the EU or any of its institutions or agencies. They can conduct campaigns but only when they have collected sufficient evidence and they are a minor activity. It is doubtful Healthwatch England would, even then, advise a local healthwatch committee to speak out against government policy, given the Secretary of State is responsible for overseeing the performance of it and the CQC.
  • Healthwatch organisations, unlike scrutiny committees, do not have a statutory right to be involved in consultations. Their primary role, instead, is (a) to promote the involvement of individual patients and members of the public in consultations and (b) gather evidence from the views and experiences of patients, users and the public to feedback to commissioners and providers.
  • A local Healthwatch must appoint one person to represent it on the LA’s Health and Wellbeing Board (NHS Act 2012 s.194 (6)[7].  Healthwatch would then become jointly responsible with the other members of the Health and Wellbeing Board for the JSNA and JHWB, despite the fact a lay representative could struggle to retain independence surrounded by persuasive NHS and Local Authority executives.
  • Section 224 (1a) of the Local Government and Public Involvement in Health Act 2007 allows the Secretary of State to impose a duty on service providers[8] to respond to requests for information. But following consultation on Local Healthwatch regulations, the Department of Health has decided service providers should not have a duty to provide local Healthwatch committees with information. A local Healthwatch committee must use the FoIA to obtain information when a service provider refuses to collaborate. In a letter to the Secretary of State, the Chair of Healthwatch England, Anna Bradley, has protested:

“The local Healthwatch may struggle to get information using the FOIA. This is because when a LA or health provider outsources provision of services to a private company then the information held by the private provider may not be accessible using the FOIA.  The public authority would need to have complied with its own statutory duty to put contractual mechanisms in place to ensure the activities set out in s. 221 (2) can be carried on …. .. but commercial contracts between private companies and public bodies try to limit any FOIA disclosures as far as is possible. This is achieved by placing an obligation on the public body to try and rely on exemptions, for example the commercial interests exemptions and confidential information exemptions, or by using third party rights exclusion clauses and the rules of privity of contract (Ref:28).

Her concerns echo those of Christopher Newdick of Reading University (Ref 29). In 2006 he wrote:

“ If an NHS body enters into a contract with a private commissioner (or provider) although the NHS body is subject to the (FOI) act, the act specifically excludes disclosure of information that is confidential or likely to prejudice commercial interests. Private sector companies are entitled to seek the protection of this exclusion, as their obligations are primarily to their shareholders”.

 Clinical commissionng groups and CCG committees in common are currently not mandated to have local Healthwatch representatives on their decision making committees.

In a recent letter to the Secretary of State Anna Bradley expressed concern that under a  Draft Legislative Reform (Clinical Commissioning Groups) Order 2014, CCGs would be allowed to form joint committeess with each other or with NHS England but would not be mandated, at the same time, to allow local Healthwatch representatives to attend joint meetings as observers (Ref. 30 &31 www.healthwatch.co.uk). The letter pointed out that In areas such as Manchester where joint CCG committees already existed, local Healthwatch organisations found that CCG decision-making lacked transparency and accountability, a situation that impaired their abiity to carry out their Healthwatch functions. They reported :

  • Disengagement of CCGs with local acountability mechanisms.
  • Poor public engagement by CCGs and committees in common.
  • Major decision-making items such as models for service reconfiguraion being discussed in closed sessions.
  • Insufficient planning for public engagement

The letter from Healthwatch England called on the SoS to issue statutory guidance that would  address these problems (Ref 30). But the Secretary of State replied  he had no plans to introduce further legislative change to amend the LRO or to introduce a mandatory non-votong seat for local Healthwatch on CCG or joint CCG  committees (Ref.31). This, he said, would be contrary to the ‘permissive and flexible nature of legislation in relation to CCGs’ and the duty to involve and consult the public would still apply to CCGs. Short and accessible resources might be found to enable local Healthwatch committees to work together ito monitor the decisions of CCG joint committees. Minimising the obligations placed upon CCGs is, thus, a greater priority for the SoS than ensuring CCGs have access to the views and experiences of patients.

The Chair of Healthwatch England has pledged “The Healthwatch network will hold all organisations to account for how they involve consumers and users in their decision-making. Healthwatch will challenge organisations to do better and remind them of their responsibilities.” (Ref 28). This admirable aim might be difficult to achieve, given the response, above, from the Secretary of State.

  1. COMMON LAW AND CONSULTATION

Common law is the body of law (case law) which has been made by judges. It is binding unless it conflicts with statute (Acts of Parliament) or regulations and takes precedence over government guidance and local policies.

5.1 Rules defining ‘proper consultation’

The common law, below, defines what is meant by the term consultation and what constitutes a ‘proper consultation’.

Consultation is ‘the communication of a genuine invitation to give advice and a genuine receipt of that advice’ (R v Sec of State for Social Services ex parte AMA (1986)

Consultation with patients and the public, whether statutory or not, must be carried out properly i.e.

 

  • Be undertaken when plans are at a formative stage
  •  Include sufficient reasons/ information to allow for an intelligent consideration
  •  Allow adequate time (usually 12 weeks) for an intelligent response
  •  Public responses must be conscientiously taken into account when the final decision is taken

(R v Brent LBC ex parte Gunning (1985)).

A recent ruling by the court of appeal states:

  • The consulting bodies obligation is to let those who have potential interest in the subject matter know in clear terms what the proposal is and why exactly it is under consideration, telling them enough (which may be a good deal) to enable them to make an intelligent response.
  • The duty (on the public body) to provide sufficient information does not in general extend to providing options or information about proposals which it is not making unless there are very specific reasons for doing so.

R (on the application of United Company RusalP Plc v The London Metal Exchange (2014) EWCA Civ 1271 (*th October 2014

In other words, a “one-option’ consultation is lawful given it is undertaken with an open mind i.e. before a decision is taken.

5.12  Central procurement of new services

A court of appeal ruling clarifies when NHS commissioners need to consult during the planning and procurement of new services (R(Fudge) v South West Strategic Health Authority and Others (2007)):

  • If new services are planned and procured centrally by the DH and an NHS organisation is not responsible for the services, it will not have to involve users or consult with the OSC.
  • Where services are planned centrally and procured locally, the NHS organisation responsible for the procurement must involve users and consult with the OSC where necessary.
  • In addition, an NHS body may have a duty to involve in relation to proposals and decisions which it has not itself generated: the issue is whether the proposal affects the services for which the NHS body is responsible. A local NHS body may need to involve users if a national decision to procure a treatment centre has an impact on other services for which the body is responsible.

5.2 Common Law v. Government Policies

5.21 Consultation Principles (Cabinet Office 2012)

In 2008, the common law principles in 4.1 above, were codified in the ‘Code of Practice on Consultation for Government Departments’ (Dept Business, Enterprise and Regulatory Reform July 2008). The Code set out criteria to be reproduced in formal consultation documents on substantial changes.

In July 2012, new guidance or ’Consultation Principles’ published by ther Cabinet Office (Ref 15) replaced the former ‘Code of Practice’. The emphasis is now on the use of on-going consultation with patients and their representatives (NHS Act 2006 s242(1B)) in preference, where possible, to formal, written consultations with OSCs (NHS Act 2006, s.244). It states:

  • NHS bodies proposing changes to local health services should identify key stakeholder groups and embark on earlier engagment with those groups, in preference, to conducting more formal, written consultations.
  •  Formal consultations may still be appropriate for ‘contentious’ changes (formerly known as ‘substantial’). And, longer and more detailed consultation will be needed in situations where smaller, vulnerable organisations, such as small charities could be affected.  
  •  Consultation needs to be digital by default, but other methods should be used where these are needed to reach all groups affected by the policy. Consideration should be given to more informal ways of engagement if more appropriate e.g. e-mail, web-based forums, public meetings, working groups, focus groups,surveys – rather than always reverting to a written consultation. Information should be easy to understand and clarify the main issues and be sufficient to enable stakeholders to make an informed response.

The Consultation Principles, above, do not have legal force. However, their emphasis on informal engagement with individual patients rather than formal written consultations with LAs is in keeping with the 2006 legislation which gives NHS managers leeway to decide how, when and who to consult. The 2013 LA regulations  preserve the right of LAs to demand enough time and information to enable them to make an informed response to a consultation, in accordance with case law. But LA statutory powers are in danger from other stipulations that may limit, for example, their ability to refer objections to the SoS.

5.22 Common Law and the Freedom of Information Act 

Commercial confidentiality takes precedence over the public’s right to information. Under The Freedom of Information Act (FoI), 2005, the public has the right to request official information from public bodies. But the Act carries 23 exemptions preventing disclosure. Section 43 of the Act specifically excludes public bodies from disclosing information likely to prejudice the commercial interests of any person (a person maybe an individual, a company, the public body itself, or any other legal entity).  It even provides an exemption from the requirement to inform the public whether or not such information is held. Consequently, contracts between NHS bodies and private firms e.g. PFI contracts, contracts with commercial providers or commissioners are shrouded in secrecy.

Professor Allyson Pollock describes in an article her attempts to obtain a copy of the contract that   allowed Circle Healthcare to run Hitchingbroke NHS Hospital and how the  DH and Treasury refused to disclose it on the grounds of commercial confidentiality. She comments, “In future, healthcare will be arranged through tens of thousands of commercial contracts. It will become increasingly difficult to know what exactly is being done with public money ( www.opendemocracy.net/author/allyson-pollock )

Christopher Newdick of Reading University has warned, “where contracts are between private commissioners and private providers,  it will be very difficult to get useful information because the private organisations would often wish to prevent disclosure in their own commercial interests (Ref. 29).

His warning has come to pass. The Information Commissioner recently refused a Freedom of Information Request about the staff and dispensary of a GP practice.  The Commissioner said he was aware that “primary care health services contracts are currently being granted to private companies…..and that the disclosure of information would be likely to prejudice (the GP practice’s ) commercial interests. And may result in the closure of the practice”. (Ref 32).

Hundreds of general practices and commissioning functions are now operated and managed by profit making firms and many more are under threat (Ref: 3). NHS England recently announced a short list of companies and organisations competing to be on the approved list of firms able to compete for £1 billion worth of contracts offering advice and support on commissioning to CCGs. The sucessful firms will be involved in patient care reforms, drug purchasing, negotiating hospital contracts and crucially, outsourcing services to the private sector. A largely unknown commissioning support industry group (CSIG) has now turned its attention on  the NHS. United Health, the giant US health insurer (and former employer of NHS England’s chief executive Simon Stevens), chairs the group. It has been taking part in regular meetings with Bob Ricketts, director of commissioning support services and other senior staff from NHS England. And recently it paid for senior NHS managers to visit its care centres in the US on a five day fact finding mission. (Ref 33).  Thus NHS commissioning has become the target for unaccountable, profit-hungry, giant health care firms whose decisions are shrouded in secrecy, far from the realm of public scrutiny. The Cambridgshire and Peterborough consultation, with its meaningless questionnaire, shows planners are adapting to the fact that the public no longer has enough information to respond intelligently to consultations or to hold NHS organisations to account.  Nevertheless they continue, compelled by law, with the (expensive) charade of giving people a say.

6.PATIENTS’ LEGAL CHALLENGES – JUDICIAL REVIEWS

Judicial review is a mechanism that allows the Courts to hold public bodies [9] to account if they abuse their power by acting:

  •  Illegally – where a public body makes decisions inconsistent with its statutory powers or duties.
  •  Irrationally – where a public body makes decisions which are irrational or illogical
  •  With procedural impropriety – where a public body does not act impartially e.g. makes a decison that discriminates against individual patients.

It is an essential mechanism for upholding the statutory rights of the public and individual citizens .

The NHS Constitution gives patients and the public the right to make a claim for judicial review if they think they have been directly affected by an unlawful act or decision of an NHS body. All NHS bodies and private and third sector providers supplying NHS services are required by law to take account of the Constitution in their decisions and actions.

Judicial review is not a form of appeal against a decision, as such, but against how decisions are made.  Failure of CCGs, for example, to observe any one of their statutory duties in commissioning decisions  i.e.not only the duty to consult, could expose them to challenge in the courts. Their duties include:

  •  Duty to promote the NHS Constitution.
  • Duty to secure continuous improvement in (i) the quality of services provided and (ii) the quality of outcomes that are achieved.
  • Duty to secure continuous improvement in the quality of primary medical services.
  • Duty to promote patient involvement in their own care ‘no decision about me without me’.
  • Duty to reduce inequalities between patients with respect to their ability to access health services and the outcomes achieved.
  • Duty to enable patient choice.
  • Duty to secure public involvement & consultation as laid down in NHS Act 2006 s. 242 (1B)).
  • Duty to promote the integration of health services with health related social care services.

The ‘right’ to seek  a judicial review is not an easy option. Legal costs are high (although legal aid is still available for the poorest claimants living on means tested benefits). And a ruling in the Court of Appeal makes it clear that very little can be achieved by bringing proceedings for judicial review where the obligation (to consult) is limited (R (Fudge v South West Strategic Health Authority and Others (2007).

However, judicial reviews can have a successful outcome for campaigners, as shown by the ‘Save  Lewisham Hospital’ campaign and the ‘Stop the NHS sell-off’ campaign in Cambridgshire. In 2012, NHS Gloucestershire PCT backed down over plans to move community services and 3,000 staff to a social enterprise on the day it was due to face a challenge in the high court from Michael Lloyd, a 75 year old resident (Ref 34). The DH later gave the PCT permission to consider the option of establishing a new NHS community  trust.  The PCT bowed down to public pressure and decided to do so, keeping community services in the NHS.

6.1 How to seek a judicial review

 The following advice on how to seek a judicial review is taken from the 2006 briefing “Patients’ legal challenges to NHS cuts /closures” by Leigh Day solicitors Richard Stein and Ross Curling (see KONP website). The procedure is still largely relevant but see, also, an excellent, up-dated briefing by Richard Stein ‘Quick and Easy Guide to Judicial Review’, available on-line.

  •  Find patients affected by the service changes who would be willing to take legal action. If they are in receipt of any means tested social security benefits such as income support, pension guarantee credit, family credit, housing benefit or council tax benefit they are likely to be eligible for Legal Aid (now called Public Funding).
  •  Collect all of the available documentation available from the relevant NHS bodies (reports, public consultation documents, press releases, press cuttings, correspondence etc).
  • Obtain legal advice/help to write a letter before claim to the relevant NHS bodies reminding them of their duties to consult before making changes to health services, threatening judicial review if they do not agree to reverse the decision. Our contact details are below.
  • Do not delay! Cases must be brought promptly (within weeks of the decision being made).
  • Once a lawyer’s letter has been received in cases where no real consultation has been carried out the decisions are usually put on hold pending consultation. If not, commencing legal proceedings will need to be considered immediately.
  • The case will be heard in the High Court in London (or one of the regional Administrative Courts).
  • There is no oral evidence so the Claimant does not have to go to court. He or she can play as large or small a part as he or she wants to.
  • If the implementation of the decision is imminent proceedings can move very quickly, suspending a decision in a matter of days or a few weeks. Otherwise it can take up to a year.
  • Carry on campaigning! A judicial review about the lack of consultation will only delay the implementation of a decision. To prevent it the political argument needs to be won. You have to make it too difficult politically for the NHS body to confirm their proposed changes.

6.2 Restrictions on Judicial Review (Ref 35)

Plans to make it harder to challenge government decisions via judicial review, introduced in the  criminal justice and courts bill, were approved by the House of Commons in 2014. These included :

  • Reducing the time limit for bringing judicial review for certain cases. In planning cases the time limit was reduced from 3 months to 6 weeks; in procurement cases from 3 months to 4 weeks.
  • Removing the right to a hearing in some cases. If a judge after considering the case on paper, concludes that a case is ‘totally without merit’ claimants now lose the right to seek a short hearing before the court, a move which frequently led to a full hearing in the past.

However, in October 2014 the House of Lords voted against the plans on the grounds that they would mean governments could not be brought to account in the courts if they acted illegally. The three main legal professions in England and Wales also condemned a move to prevent charities and non-governmental organisations from intervening in judicial review cases which contained matters of public interests  (Guardian 28 October 2014; see also 3.1).

The government is considering further changes:

  • A significant increase in court fees, to meet the actual costs of the courts in handling a judicial review
  • No payment from legal aid unless a case is expressly granted permission to proceed to a full hearing. As the majority of judicial review cases are settled (usually) favourably before the permission stage is reached, this proposal would threaten the financial viability of law firms which act for claimants.
  • Removal of legal aid from foreigners and prisoners

Jamie Beagent from openDemocracy concludes:

“ The government has repeatedly sought to justify these changes through unevidenced assertions that judicial review is a hindrance to economic growth and that right to judicial review is ‘abused’. …..

Make no mistake , these changes are not about saving money or addressing ‘abuse ‘of the judicial review process. They are an ideological attack on the ability of citizens to hold our government to account which threatens lasting damage to the rule of law in this country”.

CONCLUSION

The type of public engagement preferred by NHS organisations and the Cabinet Office is the involvement of individual patients or individual members of the public – in marginal decision making and on management terms.  A more democratic approach seemed possible in 2013 when NHS England published guidance stating people should be directly involved in decisions about who should provide services. However, that guidance was soon altered. It now refers to patient representation on panels and their need for support and training, not consultation with the general public. Individual participants, as discussed, have no means of redress when their views are ignored. So engagement with them allows managers to operate unhindered while, paying lip service to public accountability and consultation. The NHS Constitution, meanwhile, gives individual patients or members of the public the right to claim judicial review if they are personally affected by an illegal or discriminatory decision. But recent moves by the government to limit the number of judicial reviews make it increasingly difficult for them to do so.

Opposing policies such as the above, where statutory rights are given by one hand and removed or weakened by the other, are now widespread. Local authorities or OSCs, the last remnants of democracy in the NHS, have the right to require NHS Foundation trusts, private sector providers and CCGs to provide them with information but they have no enforcement powers, outside the formal consultation process, or visiting rights to enable them to seek information for themselves. They have the right to be consulted on proposals for substantial changes but it is becoming more onerous for them to refer objections to the Secretary of State. Moreover, the duty on NHS organisations to consult with OSCs is shrinking. There is no formal requirement for commissioners to involve LAs/OSCs in deciding whether to classify services as commissioner requested services or not. Changes to or closures of services deemed ‘non-commissioner requested’ or ‘non–essential’, by definition, would not trigger a requirement for consultation even though such services may be valued or needed by patients. OSCs do not have a right to be consulted on Foundation Trust plans to increase private patient income or make significant transactions or mergers, acquisitions and separations or to form joint businesses with the private sector, all of which could pose a significant risk to local services. Foundation Trust governors, alone have the power to approve them. Yet OSCs are far better placed than FT governors to assess the implications of such decisions for the wider health economy. The duty to consult LAs or OSCs does not apply when Trusts go bankrupt and are taken into special administration. The amendment to clause 118 of the Care Bill was rightly viewed as a triumph by campaigners. It requires administrators to consult with every CCG likely to be affected by their recommendations, not just the CCGs attached to the failing trust, and provides some scope for public consultation. However, the amendment leaves a basic loophole intact, namely, when administrators and CCGs cannot agree, NHS England, not the CCGs or public opinion, has the final say.

Local Healthwatch organisations – the official ‘consumer champions’ – are constrained similarly.  Healthwatch members have the sole right to visit and inspect health service premises on behalf of local residents. They can report their findings to Healthwatch England and NHS organisations but are forbidden by law to use the information to oppose government policies or engage in policy work. They may campaign if they have enough evidence but only if it is kept as a minor activity. Equally odd, is the Secretary of State’s refusal to provide Healthwatch members with the right to information or the right to attend CCG board meetings as observers. Healthwatch members have a duty to provide the public with information and help patients exercise choice. Yet they may have to use the Freedom of Information Act to obtain official information for themselves. Another key role for Healthwatch organisations is to gather the views and experiences of patients and feed these back to Healthwatch England, the Local Authority, OSCs and NHS organisations. Yet Healthwatch members cannot make use of their own knowledge in public consultations as they do not have a statutory right to be consulted. Instead, Healthwatch committees have been subsumed into the planning process by virtue of their single seat on Health and Wellbeing Boards. In practice, far from being ‘consumer champions’, Healthwatch organisations are the equivalent of a government smoke screen, engaging the public in a minor way, while fundamental changes to the NHS, including privatisation and its consequences, remain  hidden from view.

A prerequisite for accountability to operate is a free flow of information to ensure citizens have the knowledge to scrutinise and challenge the decisions and acts of those in power (Ref 4).  However, under the Freedom of Information Act , information can be withheld on the grounds of commercial confidentiality. Contracts between NHS bodies and commercial firms are shrouded in secrecy. As a result, consultation documents are bereft of  essential information, so that consultees cannot make an informed response even if they wish to.

Moreover, contracts with private firms  leave patients with less information to choose where to be treated. This irony and the fact many  patients may be too ill to choose fosters not only spurious competition but health inequalities, as shown in the recent Labour Party Parliamentary health committee review.  An absurdity at the heart of government policy is the ideological belief that privatisation and competition  promote choice, improve services and reduce health inequalities.

Ominously, profit hungry commissioning support firms are coming together in groups to bid for lucrative NHS contracts.  One shadowy commissioning support group, chaired by United Health, the giant US health insurer, is currently lobbying NHS England strongly for a contract worth £1 billion, even to the extent of taking NHS officials on a fact finding trip to the US. When so much tax payers money is at stake, it is, perhaps, not surprising that CCGs are taking major decisions in closed sessions and disengaging from local accountability mechanisms, as reported by Healthwatch organisations. The decision of the SoS to refuse Healthwatch representatives an observer seat on CCG committees reinforces the view that deals with private firms are being struck in secret. The prescient words of historian Charles Webster spring to mind “local communities and their representatives are likely to count for little when it comes to appeasing corporate interests” (Guardian May 8th 2002).

There may still be time to save the NHS and restore democractic accountability. People of all political persuasions, in England, as well as Scotland, support the health service and do not want it handed over to profit driven private firms. And irrespective of how hard the government works behind the scenes to curtail statutory rights, it cannot remove the power of the public to vote  politicians  out of office at the ballot box. That power, above all,  explains the policitians fear of exposure, their drive to hide information and to privatise by stealth. Thanks to the persistence and direct action of campaigners, however, news of NHS privatisation is getting out, hopefully in time to influence public opinion and galvanise grassroot support before the general election in 2015. Effective grassroot campaigners have shown they have the power to jolt and influence politicians out of their complacency. The survival of the NHS rests in their hands.

REFERENCES

  1. The National Health Service, A Political History by Charles Webster : OUP 2002
  2. The Plot Against the NHS by Colin Leys and Stewart Player: Merlin Press 2011
  3. From Cradle to Grave by Allyson Pollock and David Price, Chap.7 NHS SOS: One world publications 
  4. Democratic Accountability in Service Delivery – a Synthesis of Case Studies by Kristina Jelmin. International Institute for Democracy and Electoral Assistance (International IDEA) 2011
  5. Local Authority Health Scrutiny: A summary of consultation responses DoH, 14th December 2012
  6. Local Authority Health Scrutiny: Guidance to support effective health scrutiny DoH June 2014
  7. Planning and delivering service changes for patients: NHS England guidance for commissioners, 20th December 2013
  8. www.irpanel.org.uk
  9. Independent Reconfiguration Panel: Reviews 3rd edition, 2010
  10. NHS London Reconfiguration Guide Version 3, 2011
  11. NHS Yorkshire and the Humber: A guide to service change, 2010
  12. Guidance for Commissioners on ensuring the continuity of health care services: Designating Commissioner Requested Services and Location Specific Services Monitor, 28th March 2013
  13. Dealing with financially unsustainable providers by Tony Harrison & Anna Dixon: The Kings Fund,19th September 2012
  14. Planning for closure: the role of special administrators in reducing NHS hospital services in England. Allyson Pollock & David Price BMJ2012:347:17322
  15. Cabinet Office Guidance: Consultation Principles, 17th July 2012
  16. Your Statutory Duties. A reference guide for foundation trust governors: Monitor August 2013
  17. Real involvement: working with people to improve health services: Statutory guidance DoH, October 2008
  18. The race to privatise everything in the NHS Paul Evans for openDemocracy, 6th September  2013   (opendemocracy.net/ournhs)
  19. Local enhanced services worth millions to be opened up to competition from April: Pulse, 28th March 2014
  20. Transforming Participation in Healthcare: “The NHS belongs to us all” Statutory guidance NHS England 2013, Publications gateway ref: No 00381
  21. Local Government Lawyer/procurement localgovernmentlawyer.co.uk
  22. Proposals to improve older peoples’ health care and adult community services: Cambridgeshire and Peterborough CCG, 17th March – 16th June 2014
  23. “Waste of money” and “poor care”- NHS privatisation failures exposed across the east of England by Steve Sweeney for openDemocracy – Our NHS, 3rd October 2014
  24. ‘Government forcing us to open NHS to competition’ say commissioners: Caroline Molloy for openDemocracy, 25 September 2013
  25. ‘Competition guidance stalls around lack of evidence of benefits to patients: David Williams, HSJ 16th September 2013
  26. NHS England accuses Monitor of “unpicking” choice and competition framework: Will Hazell HSJ 5th March 2014
  27. Key NHS recommendation to “ put patients first” rejected by government advisors: Caroline Molloy, OpenDemocracy 13th March 2014
  28. Healthwatch England’s position on the Statutory Instrument 2012 No. 3094  www. healthwatch.co.uk
  29. Newdick and Danbury BMJ 12th January 2006
  30. Letter from chair of Healthwatch England to Secretary of State 16th July 2014 re- Draft Legislative Reform (CCGs) Order 2014
  31. Secretary of State’s reply to Chair of Healthwatch England 11th Augusr 2014
  32. Will private sector secrecy stop the NHS becoming more open? By Roger Kline for Open Democracy – Our NHS October 2013
  33. Calls for greater disclosure on NHS chiefs’ meetings with private US health insurer by Jamie Doward : The Observer 30th August 2013
  34. Plans to move NHS services to social enterprise halted; Jo Ademjl Guardian Professionals 10th February 2012
  35. ‘Constitutional Assault on judicial review’ by Jamie Beagent: openDemocracy – OurNHS, August 2013.
  36. Revisions to the Operating Framework for the NHS in England 2010/11 June 21st 2010 Gateway reference: 14374

[1] NHS regulators include:

  • Monitor – responsible for (i) issuing licences to providers of NHS funded services registered with the Care Quality Commission (ii) overseeing the performance of all providers (iiI) promoting competition between providers, with the power to impose fines for infringements of competition law (iv) minimising the obligations placed upon both commissioners and providers.
  • The NHS Commissioning Board (NHS England) – responsible for (i) setting up and offering support to CCGs (ii) ensuring patients can exercise choice and (iii) ensuring that any organisation providing functions or services on behalf of the NHS can operate freely with the minimum of interference.
  • The Care Quality Commission (CQC) – responsible for (i) registering and inspecting all care providers that meet its standards of quality and safety (ii) publishing reports, thus, enabling patient choice (ii) providing NHS and private sector organisations with a common inspectorate that allows them to compete on a level playing field.

[2] Health and Wellbeing Boards (H&WBBs) are joint forums in which health and social care senior managers, local commissioners, at least one elected representative and one healthwatch representative work together to draw up joint strategic needs assessments (JSNAs) and Joint Health and Wellbeing strategies (JHWSs).. The H&WBBs are expected to drive the local commissioning of health care, social care and public health services, including reconfiguration plans, through their JSNA process  (Ref 7). H&WBBs must involve local Healthwatch and the local community in a continuous way

throughout the JSNA and JHWS processes (Ref 20).

[3] Local MP Jeremy Hunt, now Health Secretary, personally intervened behind the scenes to encourage the Virgin takeover, according to Daniel Boffey in The Observer, 9th September 2012.

[4] NHS organisations must have to regard to guidance but courts will not require them to follow it if  they have good reasons not to do so or where it conflicts with primary legislation.

[5] In 2012, the CCG did not support the Community Services Trust’s bid to become a foundation trust on the grounds that it provided the CCG with flexibility to plan in the face of increasing demand and funding cuts

[6] Recent guidance for LAs recommends that when a health scrutiny body (LA or OSC) is planning to review a certain service, it would be useful if the local Healthwatch arranged to visit the service at the same time to inform the review (Ref 6`).

[7] The regulator Monitor considers that the 2012 Act: ‘strengthens local democratic involvement by ensuring that there is at least one locally elected representative and one representative of Healthwatch on every HWB, to influence and challenge commissioning decisions and promote integrated working’  (Ref 16).

[8] in this context service providers include NHS trusts, Foundation trusts, CCGs, LAs and persosn prescribed by regulations made by the SoS

[9] or private companies undertaking public functions

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We’re calling on mental health providers across England to take a long and careful look at today’s results.  Some of the findings may make for uncomfortable reading, but they also point the way making meaningful improvements in the things that matter most to service users. Trusts should work with their local service users to review the survey findings and prioritise changes to improve personal care and support.

The-Community-Mental-Health-Survey-2014-1

People using mental health services want to be treated as individuals and supported to be involved in their care.  But this survey, developed with input from service users, shows some serious shortcomings in the mental health services that people are experiencing. Large proportions of service users report that they are not as involved in their care as they would like to be or that the service does not support them in their lives and goals. In particular, we are concerned that only a minority of people say that mental health services ‘definitely’ help them to feel hopeful, understand what matters to them, or help them with the things that are important to them. These are the hallmarks of a personalised and effective service and there absence gives cause for alarm.

The-Community-Mental-Health-Survey-2014-3

It’s also very worrying that one in three people are not told who to contact in a crisis – and that one in five of those who do try to contact someone in a crisis don’t get the help they need. It’s vital that people who need urgent help for mental health conditions can get it; if they don’t the consequences can be truly tragic.

The-Community-Mental-Health-Survey-2014-2

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In a recent Progress blog Andy Burnham set out how, under Labour, the NHS would provide a single service for the whole person, meeting physical, mental and social needs together. Ed Miliband, in his Hugo Young lecture, committed Labour to a radical reshaping of services so that local communities can come together and make the decisions that matter to them.

Whole person healthcare and bringing communities together are inextricably linked: indeed, some 60% of the beneficial impact on health is accounted for by the ‘social determinants’, such as jobs, housing, education, lifestyle and local conditions. All the other services – local authorities, education, housing, employment, welfare, culture and sport – make a contribution to health as a spinoff from their own actions and responsibilities.

What people do for themselves and each other in their families, households, communities and networks is also a key factor in health. Some of this is entirely personal. Some of it forms the texture of shared community life – social clubs, sports activities, choirs, mother and toddler groups, bingo, even simply keeping up with friends.

Taking part in ‘local social action’ has many benefits for health, improving individuals’ resilience, supporting behaviour change such as stopping smoking, and overall helps to narrow health inequalities. There is a 50% increased likelihood of survival for people with stronger social relationships. This is consistent across age, sex and cause of death. It is comparable with tackling factors such as smoking, alcohol, BMI and physical activity[1].

Put simply: by increasing social networks, we improve health – and can hold public services to account. There is a deep connection between the density of social networks and the capacity of residents to respond, intervene and cooperate with official institutions. Making these networks denser will bring benefits to people and is likely to ease pressures on the health service.

Here is an example:

Building on the work of C2 (2), The Health Empowerment Leverage Project carried out a project in Townstal, Devon. A resident-led partnership brought police, dental services, play services and housing together. Within six months there was an increase in satisfaction with services, and police reported crime dropping as a result of the partnership. New groups began, serving local needs, and attracting funding from outside the area for new projects (www.healthempowerment.co.uk). The continuing life of the resident-led partnership can be seen at www.townstalcommunitypartnership.org.uk .

Results included a new dental service established, a playpark established and fully used, a new GP surgery planned and well-attended social events and football sessions.

Health agencies must understand social networks and the cumulative effect of all the public and private services which impact on a given locality. For far too long, they have pursued community involvement in a marginal way and in isolation from the very people and agencies whose collaboration they need. This has been self-defeating, missing huge opportunities to boost the benign social determinants.

Empowering citizens and communities does not happen by simply letting go of the reins but by making local empowerment part of the universal system. This means also incorporating it as a requirement even where a service is being delivered by the private or voluntary sector. Empowering local communities and collaborating with other services needs to be part of every commissioned contract. The citizen powers we want to boost are not powers that compete with the system but powers to make it work at its best.

The tragedy of declining support to community activity – completely unmonitored by the Coalition government – is doubly frustrating because the resources that are needed are marginal compared with those of the mainstream services. Funding is needed for community development workers, training, leadership, and time spent by staff in partnership activities with communities and partner agencies. An investment of £2m in each principal local authority area in England (about £300m in all), which could hugely increase local community activity if it were well planned, would amount to less than 0.3% of the health budget. Pilot studies by the HELP group suggest returns of at least 6:1.To avoid a postcode lottery, it has to be made clear that the rights and the responsibilities outlined in the NHS Constitution and in other legal requirements ensure clear national deliverables which cannot be gainsaid locally. However, how these national commitments are delivered needs to be open to influence at local level. We need a combination of central requirements and local participation and responsiveness.

If we are to make prevention a reality, such upfront investment is a necessity. This needs to be driven forward. It will make the job of health agencies easier, not harder. Localities will have scope to do it their own way because every locality is different, but we will expect a clear direction of travel in each locality towards addressing the social determinants on a broad front through cooperation with other public services and with local communities.

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

[2] Durie R, Wyatt K, Stuteley H. Community Regeneration and Complexity ’Complexity and Healthcare Organization ‘a view from the street’ March 2004 – Radcliffe Medical Press

First published by Progress

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This charter is both a challenge and a solution to making it easier to improve equitable access to health for all.
It is addressed to all those with decision making power at local and national levels, primarily in England and Wales, including Clinical Commissioning Groups, Commissioning Support Units, Health and Wellbeing Boards, Foundation Trusts, Local Authority Public Health departments, Local Education and Training Boards and their members, Councils, local councillors, local GPs, NHS England, the Department of Health and the department for Communities and Local Government.
It also addresses those with a duty and role to influence those decision-makers – organisations like Healthwatch and governors of Foundation Trusts. The approach championed by this charter will help them in the delivery of their duties to local people, which includes consultation and engagement more broadly as well as their new duties around the social determinants of health, quality of life, isolation, reducing obesity, mental health, and pre-mature mortality.

Why Now?

  1. We welcome the improved health, longevity and health behaviours over the last 20 years, brought about by intelligent increased spending on the NHS and public services. However, these gains are under threat.
  2. Health inequalities persist. People in our least affluent neighbourhoods face earlier death and higher rates of ill-health, and these inequalities will worsen as the weight given to deprivation in funding formulae is weakened.
  3. The NHS and LAs face deep financial cuts. This, combined with what sometimes appears to be inappropriate outsourcing of the public sector, threatens services to our most vulnerable communities.
  4. High cost, high-tech services may show diminishing benefits unless they are complemented by community action.
  5. We now have robust evidence that involving individuals and communities in defining problems and solutions with statutory agencies leads to better outcomes, often at lower cost. The quality of life in a community (its level of social capital) and the level of involvement of individuals, as residents, volunteers or workers, have a marked impact on health and life expectancy.
  6. Working with communities of geography, interest and identity can make life easier for commissioners and providers by inviting responsibility, increasing agency, autonomy, and reducing dependency

Principles for Social Action in Health

  1. Enable people to organise and collaborate to:
    1.  identify their own needs and aspirations;
    2.  take action to exert influence on the decisions which affect their lives; and,
    3.  improve the quality of their own lives, the communities in which they live, and societies of which they are a part.
  2. Address imbalances in power and bring about change founded on social justice, equality and inclusion.
  3. Active communities make a marked difference to their own health and life expectancy.
  4. Co-production between communities and service providers thrives if communities are enabled to become leading players in their own interests.
  5. A needs-and-assets based approach – look for the strong, not the wrong. Even the poorest communities will have some footholds in terms of community groups and willing activists, but they have fewer than well-off areas, facing more obstacles, and with great development potential.
  6. Community development and related activities play a key role in helping develop strong social capital in communities, and therefore have a positive impact on the health and wellbeing of residents.

WE CALL ON NHS ENGLAND, PUBLIC HEALTH ENGLAND AND THE DEPT OF HEALTH TO:

Develop policies that would make community development part of the normal approach to participation, change, health improvement and reducing health inequalities. These should include:

  1. Every HWB and CCG to have a community development strategy, linking with community engagement by Local Authorities, police, community sector organisations and other services.
  2. Joint Strategic Needs Assessments to become Joint Strategic Needs and Assets Assessments, with a profile of the strengths of the local community as seen in the condition of its groups, organisations and partnerships and in the protective factors for health and wellbeing.
  3. Support investment in community development and social value.
  4. Seek opportunities that support devolvement of power and decision making about service commissioning, delivery, monitoring and resource allocation to communities in a way that is not distorted by competition rules, nor by commercial confidentiality.
  5. All CCG constitutions and plans to include a requirement to collect evidence of community development in their area. All Foundation Trusts to demonstrate in their Annual Quality Report to the community how the evidence collected by CCGs has been used to enhance services delivered by the Foundation Trust.
  6. The continuing assurance process for CCGs to highlight needs and assets-based work.
  7. The CCG Quality Premium to reward evidence of needs and assets-based approaches.
  8. Health Education England and LETBs should ensure workforce capacity and capability in community development.
  9. Public Health England should highlight assets-based approaches and community development in its guidance and develop a community development work programme.
  10. Public Health England should support local authorities and other public health bodies to commission and deliver evidence based community development.
  11.  Local Area Teams should promote community development in their constituent CCGs.
  12. Needs and assets-based working should be incorporated into work on integration. We have seen how communities stimulate cross-sector working.

WE CALL ON HEALTH AND OTHER AGENCIES TO:

  1. Inspire residents to become key players in developing their own health and well-being.
  2. Be prepared to listen, respond and begin to work in new ways. This can be turbulent but is highly productive both for communities and the agencies who serve them.
  3. Harness the interventions that have the best evidence and are most reproducible. These include community development or community building or community transformation. Community development can be mainstreamed to a much wider group of agencies than ever before. Initiatives often coalesce into resident-led partnerships.
  4. Develop, through community building, community led neighbourhood partnerships of residents and service providers. These can:
    1. play a key role in improving heath and wellbeing in local communities;
    2. reduce silo thinking;
    3.  improve services and make them more accountable to local people;
    4. bring the whole system of residents, services and elected representatives to bear on complex issues and problems; and,
    5. encourage a greater level of accountability between residents and services.
  5. Active communities need expert support. Community development workers could play a key coordinating / senior practitioner role in supporting other public sector staff to work as effective partners alongside communities.
  6. Consider making the following commitments:
    1. People are keen to take more responsibility for the quality of their own lives – we undertake to promote people’s ability to do so;
    2. People are keen to be of service to others in their community – we undertake to find ways to enable people to do so;
    3. People are keen to learn to manage their own health and wellbeing – we undertake to facilitate this learning and work with people to support self care; and,
    4. People are keen to get to know strangers and extend the range of their community – we undertake to promote public events where people can meet each other.

Produced by the Community Development Group of the NHS Alliance with the assistance of the Health Empowerment Leverage Project.
For further information and discussion about how you can help take this agenda forward, please contact:
Dr Brian Fisher brianfisher36@btinternet.com
Gabriel Chanan gabriel.chanan@talktalk.net
Colin Miller colin.miller@macdream.net
Jane South j.south@leedsmet.ac.uk

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National Voices Briefing

This week the government published significant new regulations for all health and social care provision, and we are pleased to say that National Voices has helped to improve these significantly.

There may still be further changes required – particularly with regard to the inclusion of carers and families. These would need to be pursued when the draft regulations go before parliament for approval this autumn.

All registered providers of health and social care will soon have to achieve new ‘fundamental standards’ including the duty of candour, or be fined or prosecuted for breaches.

The standards respond to the Francis Inquiry recommendation that all providers and professionals should be regulated by a small, common set of basic care standards.

We have contributed to a series of consultations on these standards. Our main aim was to ensure that in going ‘back to basics’ the standards would not abandon or sideline significant aspects of person centred care, such as people’s involvement
and control of decisions.

In a separate stream of work on candour, supporting NV member Action against Medical Accidents (AvMA), we pressed for a meaningful duty with the right threshold of harm.

Gains

As we suggested, the draft regulations now include clear wording requiring providers to:

  • enable and support people to be involved in decisions, including treatment decisions [9(3)(c-d and f)]
  • provide opportunities for self management [9(3)(e)], and
  • provide people with the information they need to do these things [9(3)(g)]

The good governance standard [17], which is all about record keeping, at least now makes reference to the use of these data (including patient experience data) for quality improvement.

On all of these the wording could have gone further, but we are pleased that it has improved.

The duty of candour [20] will now be in statute, after a long battle starting in 2011 (and for AvMA and others, well before that).
It states that where a provider becomes aware of a ‘notifiable safety incident’, it must notify and apologise face to face to the person(s) who may have been harmed, explain ‘all the facts’ and what further inquiries are required, and keep a record of this.

Following an earlier panel inquiry we are now happy that the definition of a notifiable incident will cover all cases where someone may have experienced significant harm.

Omissions

Care Planning: We strongly argued for reference to opportunities for people to plan their care. treatment and support together with their providers. There is still no explicit reference to this. From the accompanying document it appears the government considers this is covered by the general wording on involvement in decisions.

Carers and families: The current regulations that will be replaced by these standards carefully reference throughout the involvement of ‘carers, families and representatives’. Despite our recommendation that this should be carried over to the new draft, there is no mention of the role of carers, or of any requirement to involve, consult or respect them. This appears to be a major omission that is out of line with policy and practice elsewhere.

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