PPI Forums need to take the initiative in organising themselves to maximise the impact of the local voice in the health policy community

Paper by Stuart Copeland, North Birmingham PPI Forum.

S. Copeland©, 25 October 2004 07811263981

Executive Summary:

Who is in control anyway? “PPI Forums need to take the initiative in organising themselves to maximise the impact of the local voice in the health policy community”

‘Participation’ in the in 1940s was more vibrant and representative than it is today, even though there was less emphasis put on the concept then than the current government is doing now. Healthy levels of ‘participation’ in the 1940s was largely a result of ‘participation’ being associated with debates about shaping the agenda, allocation of resources and getting involved within a known process to achieve a desired outcome, and it did not need any further definition.

Today ‘participation’ has been replaced with disengagement. This can largely be seen to be the direct result of: an increased emphasis on the individual, through market forces downgrading a citizen to the consumer; the introduction of the ‘corporate rationalisers’ comprised of health care managers and administrators ; and the consolidation of the ‘professional monopolists’ , which now constitute the medical profession in its entirety, encompassing both the low (Nurses) and high (Doctors) health professionals.

‘Participation’ of public and patients is something that PPI Forums aspire to maximise and empower communities to shape and improve their local health and overall wellbeing. This has been somewhat undermined by: two powerful principal actors within the health policy community: the ‘professional monopolists’ which constitute the medical profession with its representative bodies and the ‘corporate rationalisers’ comprised of health care managers and administrators. Both have been critical of patient and public participation in shaping health and wellbeing since the development of the Community Health Councils (first established in 1973). The replacement of CHCs with PPI Forums was intended to transform public and patient participation into local health advocate groups whose membership would ensure the local communities voice/interest was heard by the health policy community. However, the other two principal communities in health care have continued and sustained their criticisms of the ability of PPI Forums to represent the voice of the local community. The criticisms directed toward the PPI Forums include:

  • Lack of professional responsibility and insider knowledge, where health care personnel are best placed to make decisions on directing limited resources toward the greatest need.
  • The division between the Health service providers and commissioning in the internal market model of the NHS, results in semi-autonomous and commercially orientated hospital trusts making commercial decisions without need for consultation.
  • There are limited resources allocated to Health, and the debate is not wide enough to include challenging the power of the pharmaceuticals companies to lower medicine prices.
  • Not enough professional knowledge, information or experience to allow effective community participation in the local decision making processes.
  • PPI Forums will be driven by sensationalist media resulting in a distortion of communication between the professionals and the community.
  • After 20 years of the promotion of the internal market and consumerism, making public services responsive to market forces has resulted in PPI Forums and community representatives treating health providers like supermarkets that deliver products rather than public health service that should be driven by human values than market values.
  • PPI Forums and health representation is significantly controlled and informed by middle classes, rather than the working classes, unemployed, youger groups, older people and unorganised socio-groups. Therefore the judgements should be left to the professionals.

Some of these criticisms are completely erroneous and only serve to undermine the good voluntary work of PPI Forums. Although some must be acknowledged as having validity, and PPI Forums can and have identified with them, and started the process of addressing these issues through the CPPIH. For example the CPPIH have developed a number of seminars and meet the expert sessions for some PPI Forums. However, this has been undermined, by the ‘meddle and muddle’ of the Secretary of State for Health, John Reid, who announced in July 2004 the CPPIH is to be abolished. Resulting in considerable uncertainty for the future of PPI Forums, and how PPI Forums can ensure a central cohesion and a holistic approach to public and patient engagement and empowerment in shaping the health of the local community.

Nevertheless, the government established Public and Patient Involvement Forums to arrange their own: governance structures, operational and strategic policy, public and patient representation and work programmes. Therefore, it is the PPI Forums responsibility to fill the vacuum created by the sustained criticism and muddled political initiative of abolishing the CPPIH. PPI Forums should establish a regional or obvious geographical area for a Federation of Public and Patient Forums (FPPF). This would ensure the local voice of the PPI Forums are effectively, efficiently and economically represented whilst ensuring legitimacy from the wider health policy community. The proposed FPPF can be considered as the second phase of democratising the health service through developing the public participation and representative role of the PPI Forums. FPPF would provide a cohesive community voice, while safeguarding the interests of local representative community in shaping health and tackling the wider determinates of health. Local PPI Forums would need to nominate an ‘Issue Network’ PPI member to sit on both their local forum and the Federation of Public and Patient Forums (FPPF). The FPPF must operate a portfolio holder structure, to ensure each representative is clear on portfolio when acting in their capacity as a FPPF member.

The proposed FPPF would be best place to enable the ‘Public’ and Patients to take part and initiate joint working practices amongst the participating PPI forums members and across larger geographical areas, which would give greater validity to research based recommendations. It could also act as a mediator for those public and patients seeking redress which should provide an opportunity for the health policy community to learn lessons from mistakes and ensure future improvement in the delivery and commissioning of local health services, which meet the local public and patients expectations.

An FPPF would form from a ‘federation’ of PPI Forum interests, overseeing pooled resources, commissioning research and support, communication initiatives, joint working protocols and strengthening the local voice of the PPI Forums through expanding the ‘issue network’ with other local public and voluntary organisations. The local autonomy of the PPI Forums would be unaffected, although developing a FPPF would ensure PPI Forums could further develop the form of participation to ensure local public and patients are empowered to engage as a collective. Thus moving toward the ‘holly grail’ of achieving patient empowerment through consensual and “joint decisions between the clinician and patient” .

The ‘federation’ would provide other local health scrutinisers, representatives, media and groups an effective mechanism to communicate with PPI Forums within the ‘Issue Network’. This would also provide cross PPI Forum communication on areas like work priorities, provide meaningful and representative social research results, developing innovative strategies and an effective public/community networking and communications policy.

PPI Forums operate out of public interest rather than self- or restricted-interests, and are effectively, efficiently and economically operating on a participation and engagement model of a patron client network. Whereby the PPI Forum member acts as the patrons upon which the public and patient, as the clients, voice is represented and promoted in the health policy community. This has provided an effective framework for participation whereby community orientated representatives listen to the concerns of the public and patients in order to shape local health services and community wellbeing.

However, the PPI Forum framework needs to evolve and expand to strengthen the organisational capacity of representing local public and patients voice, which can be achieved through a federation of PPI Forums (FPPF). This will ensure the local community voice can compete and command the same respect and status within the health policy community as do Health Scrutiny Committees (the Health Service Journal found evidence of operating out of political rather than community interest), BMA (operates as an interest group for the medical profession), and ‘corporate rationalisers’ (appointed as the guardians of the internal-market and consumer driven NHS). Maybe in time a strategy could be developed for the patients to directly elect to the FPPF.

This article is a synopsis to a larger document written by North Birmingham PPI Forum member: S. Copeland, “PPI Forums need to take the initiative in organising themselves to maximise the impact of the local voice in the health policy community”, 2004. The recommendations this document calls for are:

  • Legal powers to address the wider determinants of health
  • The proposed FPPF be given statutory powers for co-option of PPI Forum members onto local PPI Forum bodies
  • The proposed FPPF be required to publicly identify health portfolio holders
  • PPI Forum members be given statutory time off to attend related activities and events
  • A vocational qualification be offered as an incentive to PPI Forum members obtained through completion of PPI related activities, which increases opportunities to influence the national agenda through research
  • Guidance for establishing a regional or obvious geographical area of Federation of Public and Patient Forums (FPPF)
  • Guidance on how to use Patron Client model of participation for engaging public and patients in the process
  • The proposed FPPF be given autonomy over allocating resources, setting parameters for joint working and commissioning of Forum Support and research
  • A statutory requirement to require co-operation of other public and voluntary bodies to co-operate with PPI Forums and the joint working through the Federation of Public and Patient Forums (FPPF)
  • A statutory requirement for Local Authority Health Scrutiny and Social Care Scrutiny Committees to co-opt FPPF nominee onto the Scrutiny Committee as with the legal requirement of Governors on the Education Scrutiny Committee
  • A statutory requirement for publication of PPI Forum and FPPF Agenda and Papers, although maintaining simple mechanisms for public and patient participation

Background: 1999-2001 NHS Crisis

From 1999-2001 it was at long last acknowledged the NHS was in crisis, resulting from an influenza outbreak, staff shortages problems of under funding claimed to be the result of Conservative “under generous” public spending plans, concerns over Bristol and Alder Hey case, and the two high profile criticisms from Professor and House of Lords Peer Winston over the mistreatment of his 86 year old mother, and from the media coverage of Mavis Skeet delayed lung cancer operation resulting in her being unable to be operated on. These issues culminated in the ‘popular politics’ arena on the Breakfast with Frost interview with Prime Minister Tony Blair in January 2000. The Prime Minister made announcements and “promises” that funding for the NHS would be stepped up towards the “European average”. However, the money came with significant strings attached in the form of the NHS PLAN 2000 laying the targets and framework for the Health and Social Care Act 2001.

The PMs announcement on the David Frost programme was commented at the time to have not been known by the Governments Treasury Department, and “Tony’s promise was a direct response to media and public criticism at that time…[made] in haste”. This is remarkably similar to previous Conservative governments reactionary Health Policy development strategy, when in January 1988 on a Panorama programme Mrs Thatcher, the then Prime Minister, announced a government review of the NHS after sustained criticism over NHS services from media and public. The main policy initiative to develop from that review can be seen to be the purchaser/provider split (now rebranded under a Labour government as the ‘commissioning process’). However, the NHS PLAN 2000 did commit to raising the percentage of GDP spent on health care from 7% in 1999 to 7.6% in 2004 (which is nearer the estimated EU average of 8%). One of the first achievements was the inclusion of the public in the consultation and involvement of stakeholders in shaping the NHS, for example, 5 million leaflets being circulated asking what top three problems would the respondents like to see changed for the better in the NHS. The government reported a quarter of a million leaflets were returned to seven Modernisation Action Teams chaired by ministers and comprising of key stakeholders from inside and outside the NHS.

Three areas were identified from the NHS PLAN 2000 consultation exercise, these were: “more and better paid staff using new ways of working” ; “reduced waiting times and high quality Care Centred on Patients” ; “improvements in local hospitals and surgeries.” All these were to be achieved over a 10 year period and to be managed by initiatives developed by the Modernisation Board, of which the Public and Patient Involvement Forums was developed as an initiative.

NHS PLAN 2000 did not have any major new themes other than reiterating policy initiatives coming from previous government statements. Therefore the NHS PLAN 200 can be considered, as Dixon suggests, a “collection of candid observations”, and “the NHS is a 1940s system operating in a 21st Century world… The NHS PLAN 2000 was full of what to do but short on the how… The NHS PLAN 2000 is a step forward to solve the problems. However, it is hardly a Blue Print and it will have to be seen over the forthcoming years.”

The government established Public and Patient Involvement Forums to arrange their own: governance structures, operational and strategic policy, Public and Patient representation and work programmes. The above statement that the “NHS PLAN 2000 was full of what to do but short on the how” holds a great deal of credibility in identifying a Terms of Reference for PPI Forums, and supports the case for a proposed Federation of Public and Patient Forums (FPPF) to ensure the establishment of a local ‘issue network’ to shape local health service delivery.

Case for Federation of Public and Patient Forums (FPPF)

Dixon’s suggestion that the NHS PLAN 2000 is merely a “collection of candid observations”, is an oversimplification of the detailed targets and benchmarks set out in the NHS PLAN 2000. The NHS PLAN 2000 provides targets and benchmarks which can provide an indicative work programme for PPI Forums and other local Scrutineers to follow. However the current PPI Forum arrangements are heavily criticised from the local and national actors in the health policy community, as not providing a cohesive community representation, while safeguarding the interests of local representative community in shaping health and tackling the wider determinates of health. This opinion is held at a local “popular politics” level, effectively undermining the legitimacy of PPI Forums when communicating requests, opinions and recommendations. Therefore the optimal strategy is to develop the role of PPI Forums members to include an ‘Issue Network’ PPI Member responsible for being a member of the Federation of Public and Patient Forums (FPPF).

This would provide other local health scrutinisers, representatives, media and groups an effective mechanism to communicate with PPI Forums within the ‘Issue Network’, enabling the PPI Forums have greater legitimacy at the health ‘Policy Community’ level. This would also provide cross PPI Forum communication on areas like work priorities, provide meaningful and representative social research results, developing innovative strategies and an effective public/community networking and communications policy.

Initial dialogue with local health actors on this issue of creating a Birmingham FPPF show the consensus of opinion is in support of this initiative. Although a small number of responses added the caveat they are concerned over the issue over PPI forums loosing their local impact. This issue of concern would not materialise as the individual PPI Forums would continue to hold complete autonomy over their function, and the FPPF would act as a functionalist mechanism for engaging groups and individuals in participating in shaping health, communication and joint working initiatives. These concerns can be seen to be the direct result of residual cultural fears of politic structures, which are held because, for example, of the inadequate influence local government has over policy set by Government. But local and national government politic structure is a result of devolutionary governance structures, whereas, the proposed structure of the FPPF would form from a ‘federation’ of PPI Forum interests, over setting communication initiatives and joint working protocol, and the local autonomy of the PPI Forum would be unaffected. Other positive gains can be attributed to the proposed FPPF, such as, strengthening the local voice of the PPI Forums through expanding the ‘issue network’ with other organisations.

From developing a FPPF more advantages would be ascertained which enabled further development of the form of participation in which the public and patients are empowered to engage. Public and Patients will be able to take joint decisions with the clinician and patient (Guadagnoli, 1998). There has been much theoretical criticism from think-tanks and politicians over participation of PPI Forums as being the consolidation of rhetoric and lip service evolving from the market forces of consumerism in a dominant economic framework. This has been argued to have been the result of “participation”, as a concept, being perceived as a product to be consumed, and an extension of the dominant market led framework. However, PPI Forums are not operating out of self-interest, but are effectively, efficiently and economically operating on a participation and engagement model of a patron client network. Whereby the PPI Forum member acts as the patron upon which the public and patient, as the clients, voice is represented in the health policy community. This has provided an effective framework of participation whereby community orientated representatives listen to the concerns of the public and patients in order to obtain effective delivery of local health services.

“Participation” in the in 1940s was more vibrant and representative, even though there was less emphasis put on the concept than the government currently does. This was largely a result of participation was then associated with debates about allocation of resources and getting involved within a known process and did not need any other definition. The proposed FPPF would be best place to enable the ‘Public’ and Patients to take part and initiate joint working practices within the local PPI forums and across larger geographical areas. The proposed FPPF could also act as a mediator for Public and Patients seeking redress from which lessons can be learnt for future delivery and commissioning of local health service.

At present the only mechanism Public and Patients have in making their voice heard in addressing complaints and issues of concern is through mechanisms of complaints and redress of grievances. These mechanisms can be found in Michael Hill (1976) book: “The state, Administration and the Individual”. This book identifies the mechanisms available to the public and patients as: “Up the hierarchy”; Quassi judicial and judicial review; Ombudsman; and Political route. However these have been modernised into three stages by Professor Wilson in “Being Heard” (The Wilson Report 1994), which is now considered the Health Complaints Procedure. The stages within the Health Complaints Procedure are: first approach the internal complaints procedure; secondly seek judicial review; and thirdly contact the health ombudsman.

The internal complaints procedure for addressing the public and patients grievances can be found in the “Service First” initiative, which was first launched by John Major’s administration in 1991 as Citizens Charter. However, its relunch under Tony Blair as “Service First” contains a document with what the service user can expect from the service, it also provides mechanisms to feedback where the consumer feels the service has not been satisfactory or maladministration had taken place. This source of information would provide PPI Forums with a better picture of the local concerns and a FPPF would be able to compare these concerns geographically in order to establish trends and joint working with areas highlighting similar concerns. However, internal complaints procedures have been criticised by Michael Hill as not constructive for the complainant, for example, often when a complainant asks for a manager the person who invariably appears will not be the manager but a figure to defend the actions of their colleague or decision. Also criticism from the medical staff, claim that this procedure acts as a scapegoat and normally ends up with the most junior member of staff being appropriated to incident and blamed. Also with the phasing out of the “medical superintendent” there is no one of a higher position than consultants, therefore the judicial review and quasi-judicial review is the next step in the complainants course of seeking redress.

Quassi-judicial review through tribunals has developed into a complex system ranging from local “service committees” to the mental health tribunal, which monitor compulsory detention of mental health patients. This system is less complex and less expensive than a full judicial review. However there has been much criticism of this system with regards to its independence and representativeness of the community. For example, the fact the tribunal is specialist and within the locality of where the complaint generated could result in accusations of connections with the same institution the complainant wishes to obtain redress against. Moreover, there have been studies that show the socio-economic representation of the tribunal panels is mainly white, middle class and male, which is not a direct representation of the community. The GMC can also act as a tribunal, and has the power to discipline and strike off medical practioners. However, a survey conducted by “Which” magazine found that 85% of complainants were unhappy with the GMC decision; some argue this is due to professionals sticking together. Moreover, the Lord Irvine, when he was Lord Chancellor in 1998, indicated that the system of tribunals needs updating, as they are confusing to the public. He stated this is a result of their evolution when they have evolved separately “some national, some local, some require legal expertise, some do not, some are formal, but many are informal.” Therefore PPI forums are best placed to address the concerns of the local community, although only through establishing a FPPF would PPI Forums be able to obtain enough leverage and influence to effectively address the concerns of the public and patients.

The Health and Social Care Act 2001 provided for the Secretary of Sate for Health to establish and independent complaints authority to combat criticism. This can be seen as the Independent Complaints Advocacy (ICA) and there has been an advisory service developed for patients called the Patient Advocacy and Liaison Service, which have access to PCT Chief Executives. Although much criticism has come from Health actors claiming that this has been established as a means to bypass the judicial review and cut down on the cost incurred by the department of health for court costs over malpractice and maladministration. If this is the case then certainly any costs saved by the NHS and Department of Health is supported by PPI Forums, as long as the complaints are being addressed effectively and the money saved is being put back into the NHS to improve the collective wellbeing of the local community. Moreover, issues such as, Patient Safety whereby the National Patient Safety Agency (NPSA) have been making representation to Trusts and the Department of Health to consider disciplining employees who do not report patient safety incidents, as a mechanism of encouraging more openness, transparency and accountability for mistakes, the proposed FPPF would be best placed to implement and monitor such a Patient focused initiative. However, many PPI Forums have reported difficulties in obtaining specific information on numbers of complaints and incidents received.

Judicial review is also a possible option for the complainant, but it as with quassi-judicial review using tribunals put the onus on the patient to provide detailed evidence, but also the courts are very expensive. Additionally, the legal aid is difficult to obtain as it only provides for cases that a “reasonable man” would take to court. Therefore, conditions of the Hospital would not be financially viable to bring to the courts attention for a complaint to obtain judgement. The cases that do succeed are usually those of medical negligence. Ian Murrie states once again the criticism is that they often are long drawn out cases. In 1998 Peter Pearce settled a case over brain damage to his baby during birth, his son had just turned 27 years old in 1998. PPI Forums are again best placed to provide support in the form of self-help and access to policy networks in order to remedy continually reoccurring problems without having to put the onus on the individual, action as a collective will have much greater impact on improving the voice of the local community in shaping health.

It is possible to use the traditional political route of contacting your constituency MP, in order for the complainant to raise the issue in Early Day Motions (EDMs), Parliamentary Questions (PQs), Prime Minister Question Time (PMQT) or raise a back bench debate. However, over recent decades governments have been able to set the parliamentary agenda and civil servants have prepared answers to questions days in advance. Thus the system is not effective at redressing grievances other than highlighting particular problems that the tabloid media distorts. Thus PPI Forums and the proposed FPPF would be able to lobby politicians and provide them with constructive advice from the Public and Patients perspective.

The Ombudsman is the final route for many in their pursuit of redress, as the Ombudsman can take on cases, which involve maladministration, but do not allow investigations into areas that might have to go to judicial review. Their remit of maladministration can be seen in the definition Richard Crossman gave in 1967 when introducing the Parliamentary Commissioner for Administration Bill and is known as the “Crossman Catalogue”, it consists of bias, neglect, inattention, delay, incompetence, ineptitude, perversity, turpitude and arbitrariness and so on.” However, the Health Ombudsman can only point out maladministration and not reverse decisions or the damage already done. Therefore PPI Forums can use incidents and cases, which are brought to their attention to remedy similar problems in their area, or be able to learn from other cases in order to avoid these incidents in future.

All these complaints systems and forms of redress are mechanisms for the public and patients to have their voice heard when seeking redress for their grievances. However, they all have been considerably criticised in their ability to provide an effective, efficient, and economic system of redress for the complainant. Whereas PPI Forums could plug this gap in representing the voice of the local community by enhancing their status within the health policy community through working in a FPPF structure. Although PPI Forums need the resources, legitimacy and legal powers to overcome much of the criticism attributed to them.

There are three principal Policy Communities within the UK health care: the ‘professional monopolists’ which constitute the medical profession with its representative bodies; the ‘corporate rationalisers’ comprised of health care managers and administrators; and the voice/interests of the local community. Up to the 1990s the Community Health Councils (first established in 1973) along with a complex mechanism constituted the formal means by which the local population could make their views known to the health authorities. The replacement of CHCs with PPI Forums was intended to transform public and patient participation into Local Health Advocate groups whose membership would ensure the local communities voice/interest was heard by health authorities. However, the other two principal communities in health care have been critical of the ability of PPI Forums to represent the voice of the local community. The criticisms directed toward the PPI Forums include:

  • Lack of professional responsibility and insider knowledge, where health care personnel are best placed to make decisions on directing limited resources toward the greatest need.
  • The division between the Health service providers and commissioning in the internal market model of the NHS, results in semi-autonomous and commercially orientated hospital trusts making commercial decisions without need for consultation.
  • There are limited resources allocated to Health, and the debate is not wide enough to include challenging the power of the pharmaceuticals companies to lower medicine prices.
  • Not enough professional knowledge, information or experience to allow effective community participation in the local decision making processes.
  • PPI Forums will be driven by sensationalist media resulting in a distortion of communication between the professionals and the community. (HIV/AIDS coverage in the Daily Star 2 December 1988, “surely if the entire human race is under threat, it is entirely reasonable to segregate AIDS victims – otherwise the whole of mankind could be engulfed. Some experts have suggested that offshore islands could be used for the colonies. Pro-homosexual groups like the Terence Higgins Trust will scream that it is unfair. But they would. The truth is that promiscuous homosexuals are by far the biggest spawning ground for AIDS. They cold curb the spread of the disease if they curb their sexual appetites but that does not seem to be happening despite all the warnings and condom campaigns. Right now like Aids colonies have got to be a serious consideration.”
  • After 20 years of the promotion of the internal market and consumerism, making public services responsive to market forces has resulted in PPI Forums and community representatives treating health providers like supermarkets that deliver products rather than public health service that should be driven by human values than market values.
  • PPI Forums and health representation is significantly controlled and informed by middle classes, rather than the working classes, unemployed, older people and unorganised socio-groups. Therefore the judgements should be left to the professionals.

Some of these criticisms have been started to be addressed by the CPPIHH in developing seminars and meet the expert sessions. However, the Secretary of State for Health, John Reid, announced in July 2004 the CPPIH is to be abolished. This has resulted in considerable uncertainty for the future of PPI Forums, and how to ensure central cohesion. Therefore the proposed FPPF would be able to ensure any criticisms and problems PPI Forums encounter individually will be dealt with in the FPPF holistically on a strategic level. This will ensure anything from public criticism to joint PPI Forum working will be tackled and communicated in terms of required allocation of resources or a homogenous response, recommendation, etc to consultations and investigative reviews.

However, PPI Forums are relatively new and the great deal of hostility that has been shown to them with the sustained criticism as pointed out above, only proves that the shift in power from the medical profession and the corporate rationalisers towards the Public and Patients voice is changing the status quo, and local lessons are being learnt, which help shape health service for the better. Traditionally, the power of the medical profession has been based on its unique access to, and regulation of, a ‘body of knowledge’, which is highly valued, by both society and state. Its control of this body of knowledge, which is also termed as clinical or professional autonomy, enables the medical profession to negotiate and get certain privileges in terms of financial reward and influence. Hart wrote in 1985 that “the power of the medical profession lies in its success in having secured by political means a legal monopoly over the practice of healing in contemporary society. This made the doctor the official expert on health and illness in modern society, a title enshrined in written law. This is the legal-rational basis of medical power. It consists of a monopoly given by the state, giving the profession exclusive occupational rights, freedom to control the process of recruitment, training and practice, and control over the conduct of individual members who each enjoy the rights of clinical autonomy.” The patients voice within the health service Policy Community is represented by local public and patient representational and participatory groups, such as, PPI Forums and local authority Health Scrutiny Committees. Although a number of criticism have been attributed to the later of the two bodies, due to the political nature and infighting of the Councillors who make up the Health Scrutiny Committees and both have been criticised regarding their representational and participatory modes of working.

It has always been the case that politicians and successive governments did not meddle with the post-war health policy consensus and medical profession superiority, due to the fact that “professionals depend for their development on state action… Equally the state needs professions to fulfil the responsibilities, which modern governments assume, to legitimate state power, to make available expertise. The state and the professions need each other.” Paxman wrote: “because of the professionals specialised area of knowledge, the layman was unlikely to know what was best for himself. He depended on the integrity of the professional. Codes of practice were supposed to protect the customer by dangling the threat of expulsion and consequent loss of income over the practitioners. The professions therefore became midwife to the ‘we know best’ philosophy on which later the Establishment was to rest.” However, the view that the existence of a code of practice is sufficient to provide patients with what they should expect in terms of quality of clinical care is outdated. Those who believe the existence of a code of practice is sufficient also argue for the case of the professionals maintaining the power to control their own system of scrutiny and regulation.

After the national economic crisis of the mid-1970s it was necessary to alter the way the public sector organised itself in relation to the economy, thus creating a new political consensus. One of the pioneers of changing the delivery of health service to be more patient focused and implemented “the biggest change is usually, if inadequately, summed up in terms of the rise of [Mrs Thatcher] Thatcherism as a force in British government: a force which combined hostility to many traditional elites, a determination to use the power of the central state machine to produce change, and a rhetoric of free-market economics which produced a natural scepticism about one of the major features of professionalism.” The 1980s Conservative government scepticism regarding health care can be seen as their belief that the medical profession and the National Health Service were being protected from the competitive market forces of a capitalist economy, which was against the interest of the health service consumers. One of the Thatcher initiatives for introducing a business approach into the NHS and attacking the powers of the medical profession was in setting up the NHS Management inquiry, also known as the Griffiths Report, which was published in 1983. The report found the “absence of… general management” and recommended a core general management structure was implemented as soon as possible “to ensure that responsibility is pushed as far down the line as possible, i.e. to the point where the action can be taken effectively.” The report introduced a new public management culture into the NHS and thus giving managers more prominence than the medical professionals. The general idea was that the bureaucracy would become the defenders of a market forces driven health care system, which as New Right thinkers believed at the time; the market would regulate the health service in the interest of the consumer.

Successive governments after the Thatcher administration, under both Major through the introduction of Citizens Charter and Blair by re-launching it as Service First have continued with the expansion of market forces in health care. As they believe this will provide a good system of scrutiny and regulation over the medical profession, this in turn has resulted in the erosion of the medical professions autonomy of self-regulation. As now patients have certain guaranteed rights, which they are able to measure the level of service they receive and through the management structure hold the medical profession to account. Although many failings of the market forces approach to the health service can be seen, of which the most important failing is that patients now receive health service as a product to be consumed, which holds the distortions and inequalities that an individuals socio-economic status creates in market forces economy. Whereas the NHS in delivering its services should be based of human values not a system, which creates and widens inequalities. For example, market forces have increased the inequalities experienced by those most in need, such as, ‘older people’, as they are not an economically productive socio-economic group, the process of rationing of services, results in a negative correlation of receipt of health services when compared against younger recipients of health services, like, 35-year-old workingman. Age Concern points out ‘older people’ wait four times longer in accident and emergency wards than any other socio-economic group. These complaints and concerns are best scrutinised, not by market forces and ‘general management’, but by PPI Forums (whether PPI Forums jointly working over large geographical or individually) and Health Scrutiny Committee, although more resources and reform is needed to continue to evolve these bodies into representative and effective organisations.

The NHS (Primary Care) Act 1997 introduced Primary Care Trusts (PCTs) can be seen to have eroded General Practitioners (GPs) and other healthcare professionals power as they “are no longer responsible for quality and service provision in their own practices… PCTs hold a unified budget for GP, community health and hospital services, with the opportunity to allocate resources according to local needs and circumstances.” GPs have had to compete for additional funds along side other health services, whereas in the past under the Conservative governments GP Fundholding scheme it has been their responsibility to manage their own budget. This was seen as a further reduction of the professions powers and a strengthening of the commissioning process (New Labours label for the internal market). However, a recent announcement by the government in October 2004 sees GPs in England being allowed to keep 50% of savings they make for the NHS by sending fewer patients for expensive hospital care, John Hutton, the health minister, said family doctors would not be allowed to put the surplus into their personal bank accounts. Although the money would be regarded as a bonus for the practice, to be used to develop facilities for patients, the proposal in effect reintroduces the Conservatives GP Fundholding. GPs will be given an “indicative budget”, based on the number of patients on their lists and their health needs. The practice would benefit financially if it sent fewer patients to hospital for x-rays, tests and outpatient consultations that could be conducted within the practice or in the private sector. Under this system, the PCTs will retain responsibility for specialist commissioning of about 10% of the most complex conditions. Moreover, GPs will be put back in the driving seat for decisions about the majority of medical services, which will require PPI Forums to be proactive in scrutinising the benefits to the patients.

In light of children’s body parts being taken, without the informed consent of parents at Bristol Royal Infirmary and Liverpool’s Alder Hey Children’s Hospital. The General Medical Council (GMC) was under pressure from the government to respond on the two cases. The GMC has introduced “a revalidation (a five yearly scrutiny of competence)” of all registered doctors. Although it can be seen that pressure has been placed on the medical profession to reform its system of regulation, it has only reaffirmed and not eroded the principles of self-regulation. It can also be argued that the rapid growth in complementary medicine; the use of the internet has led to easier accessibility of medical knowledge to non-doctors and this can be seen to encourage patients to diagnose themselves and decide on their own treatment. Through market forces initiatives, such as Service First patients are able to challenge doctors’ decisions, which are reflected in the “increase in the number of formal complaints” and litigation over the medical profession, although this market forces initiative brings with it the negative effects of a market economy which undermines the limited resources within the NHS with the market forces compensation culture. Therefore there needs to be much more emphasis on increasing the public and patient participation in health care through the prominence of patient lobby groups on both a local and national political level being raised so they can effectively balance consolidation of power between the medical profession and health bureaucracy, in line with the patients groups. This requires a further reduction of the power of the medical profession and the market forces approach the health bureaucracy takes in commissioning services for patients to ensure the patients voice is heard. This would avoid or at least reduced the need for patients to find judicial review in a market orientated health service to secure compensation, or the human cost of life being lost unnecessarily due to patients needs not being listened to.

Since the Labour government has come to power there have been many policies put in place that have altered the way the medical profession operates within the NHS. For example, there has been a greater extension of the role of nurses in providing primary care that traditionally would have been provided by GPs and doctors. The creation of NHS Direct, Primary Care Act Pilots and Walk in Centres has given nurses the opportunity to run practices without the need for doctors. Additionally, in “Southampton, Sheffield and Doncaster, which used specially trained nurses to do the pre-operation checks of patients traditionally done by junior doctors” and a provision in the NHS Plan 2000 for a “£10m investment in training that means 10,000 nurses will be qualified to issue prescriptions by 2004, and extends both the number and type of medicines which nurses are allowed to prescribe.” This can be seen to be an attempt to further reduce the concentration of power held by the Doctors and GPs weakening their control of that area of medical knowledge. Although this still consolidates the body of knowledge amongst a wider professional service , and Public and Patient Forums are best placed to counter balance this, if they can secure an effective and vocal position within the health service policy community.

It seems that the power of the medical profession has been considerably weakened by the reforms over the past two decades. This is largely due to the fact that successive governments since Thatcher have been of the persuasion that elite professional groups within the public sector hold too much power and autonomy over their own careers and patients fate. Whereas the ‘consumer’ of the service, in this case the ‘consumer’ would be the patient, has little or no control over the service due to the medical professionals autonomy. Although, the successive governments health service reforms set about rebalancing the power in the patients favour, the medical professions autonomy has now been replaced with market values, which only distorts the inequalities experienced by the patient further. Therefore, under Thatcher, Major and the Blair administration there has been and still is a continuing an attempt to rebalance this power in favour of the patient through initiatives, such as, Service First, the strengthening of the general management structure in the NHS and the decision making and budgetary process through the introduction of PCTs. Although the only true rebalance will come from more effective, efficient and economic working of public and patient participation groups, such as, joint working of PPI Forums and Health Scrutiny Committees. Although the medical profession can be seen to have been weakened it has not been broken, for example, the British Medical Association still remains one of the strongest insider pressure groups in the health policy field arguing for politics to be taken out of Health. Public and Patient Forums should increasingly work in partnership with other PPI Forums and health actors, such as, Health Scrutiny Committees. This joint working and communication with the community should be overseen by a regional coordinating Federation of Public and Patient Forums (FPPF) to ensure the local voice of the PPI Forums are represented within the health policy community. The FPPF will be established as the second phase of democratising the health service through the public participation and representative role of the PPI Forums being established through the local PPI Forums electing a PPI member to a regional FPPF. Maybe in time local patients could directly elect to the FPPF, to ensure true representation.

Recommendations

  • Legal powers to address the wider determinants of health
  • The proposed FPPF be given statutory powers for co-option of PPI Forum members onto local PPI Forum bodies
  • The proposed FPPF be required to publicly identify health portfolio holders
  • PPI Forum members be given statutory time off to attend related activities and events
  • A vocational qualification be offered as an incentive to PPI Forum members obtained through completion of PPI related activities, which increases opportunities to influence the national agenda through research
  • Guidance for establishing a regional or obvious geographical area of Federation of Public and Patient Forums (FPPF)
  • Guidance on how to use Patron Client model of participation for engaging public and patients in the process
  • The proposed FPPF be given autonomy over allocating resources, setting parameters for joint working and commissioning of Forum Support and research
  • A statutory requirement to require co-operation of other public and voluntary bodies to co-operate with PPI Forums and the joint working through the Federation of Public and Patient Forums (FPPF)
  • A statutory requirement for Local Authority Health Scrutiny and Social Care Scrutiny Committees to co-opt FPPF nominee onto the Scrutiny Committee as with the legal requirement of Governors on the Education Scrutiny Committee
  • A statutory requirement for publication of PPI Forum and FPPF Agenda and Papers, although maintaining simple mechanisms for public and patient participation

Example issues that regional Federation of Public and Patient Forums could engage with the health policy community to maximise the local public and patient ‘voice’:

Example 1: By the winter of 1999-2000, “triggered by… an epidemic of winter flu” , staff shortages, the criticism from the high profile Doctor and Labour Peer Lord Winston / over the treatment of his 86-year-old mother by the NHS and the incident mentioned above concerning the 73-year-old Mavis Skeet, the Labour Government acknowledged in the NHS Plan 2000 that ageism existed within the NHS by their commitments to “set national standards for caring for older people to ensure ageism is not tolerated.” The result was the publication of the National Service Framework for Older People (NSFOP), where the first of the eight standards focused on “rooting out age discrimination” and ensuring that older people are “never unfairly discriminated against in accessing NHS” due to their age. This for the first time requires NHS bodies to put in place a number of policies to meet the needs of older people and stamp out ageism, as the Commission for Health Improvements will, as set out in the NHS Plan 2000, inspect on this issue as well as many others. Tom Utley looks at the NSFOP and it’s timing in his article in the Daily Telegraph cynically, as not an attempt to stamp out ageism but an indication that “an election is on the way when the Government suddenly remembers that 20 per cent of the population – and a much larger proportion of the electorate – is over 60… New Labour has always had a difficulty with the old. It was a little-noted fact about the last election that, while Tony Blair won his landslide,… that the older the voter, the less inclined he or she was to vote Labour.”

A recent policy statement from the Department of Health states: “National Health Service (NHS) treatment should be based entirely on clinical need and the ability to benefit and no other factor. Discrimination of any kind – whether it is on the basis of age, race or gender – is unacceptable.” Additionally, Labour Baroness Pitkeathley points out in regards to ageism that “a framework already exists for tackling this problem in the National Service Framework for Older People (NSFOP).” The NSFOP requires the NHS to review all age related policies and “to examine the justification for an age-based approach, explore alternative ways of managing access to the service and propose changes necessary.” However, this framework and all following guidance and circulars indicated that some age-related differences can be justified, therefore, the purpose of the NSFOP reviews was to distinguish between those policies that could be justified and those which could not. Although not all peers agree that some age-related differences can be justified and criticised the NSFOP, as indicated by Lord Clement-Jones statement that “the National Service Framework for Older People by itself is not enough.” Additionally, the Kings Fund found that “some [health] managers expressed confusion and uncertainty, both about the concept of age discrimination and about the criteria used to judge whether the discrimination is either unfair or justified.” This is clear from the evidence reviewed that ageism is still a problem, although it may be the case that only after the successful implementation of the NHS Plan’s 2000 aims and objectives, over the next 10 years, will ageism be stamped out.

There has been an obvious attempt to appease older people and those who seek to represent them through a series of cosmetic policies, which give a semblance of dealing with problems while not doing so in reality. For example, “since 1 April 1999 all people aged 60 and over have been entitled to free eye tests…; in March 2000 it was announced that the annual immunisation programme for influenza would ensure that everyone aged 65 and over can have the flu vaccine free of charge…; [and] the NSF published on the 27 March 2001.” However, these policies are unable to stop the practice of ageism in the NHS, as it is clear from this research that ageism exists as an entrenched culture within the NHS. This signifies that policy changes in the NHS would be difficult to implement. This can be seen to be the direct result of societal values and constructed stereotypes, which regard older peoples lives as worth less than younger peoples, being mirrored in the NHS through NHS professionals and administration staff, health policy makers, health and clinical researchers, etc.

These social constructions can be seen in terms of Gramsci’s theory of “ideological hegemony” , whereby the dominant actor maintains control by gaining the approval and consent, of their moral values, from members of society. This approval and consent can be seen to be taking place through Lukes theory of a third-face of power, which refers to the governments control of the agenda by way of “thought control… through the control of information, through the mass media, and through the process of socialisation.” Therefore, it is in the government’s interest to have a hidden policy paradigm regarding ageism and the use of age as a criterion for rationing in the NHS, as it supports their capitalist societal values. The maintenance of an effective capitalist society rests on sustaining the health of those groups, such as younger people, who are most economically productive and not wasting costly health resources on sustaining the lives of older people who are not considered economically productive. Therefore, the chances of policies being introduced and emerging that effectively tackle and bring about an end to ageism are not likely to appear until the governments hidden agenda regarding older people changes or is changed. PPI Forums are best placed to monitor and implement this change, by representing the interests of the patients and public, as the biggest service user of acute NHS services are older people.

Gramsci suggests that complete hegemony is never possible as civic society posses “dual consciousness” , whereby some of their ideas derived from the dominant actors beliefs and moral value control and some derive from their own experiences and activities. Therefore, older people and those who concern themselves with issues affecting older people would be able to see through the capitalist system and realise their interest lay in changing it. This is supported by Featherstone and Hepworth who argue that many older people are now and will in the future remove the “mask of old age” by increasingly rejecting the negative social constructed stereotypes of older people and challenging the view point that youthfulness is primarily a matter of chronological age. Moreover, as there is an every growing number of older people and support for changing issues that adversely affect older people, the capitalist system will need to make concessions to older people in order to maintain rule by consent rather than force.

The cessation of this inaccurate societal image of older people, which is currently being mirrored in the NHS, can be achieved through empowerment and the main thrust to start the chain reaction of empowering older people is to create new and improved schemes of training and accreditation for all those who work within health and make decisions that affect older people, whether on an operational or procedural level. This training will dispel societal myths and inaccuracies regarding older people, such as generalisations made about older people, like ‘they are all crumbly and senile’. This type of training could be included as compulsory modules on the different medical profession qualifications and could be an obligatory top-up course for existing health professionals, managers and admin staff. This should then be enforced by the relevant professional bodies, such as, the British Medical Association as part of the criterion for accreditation.

The implications for implementing this policy can be analysed using game theory in which benefits and utility can be measured by the decisions of one policy actor being dependent not only upon their own preferences but upon the preferences and behaviour of other actors concerned. Therefore, the result from implementing this training as a government policy strategy would produce a “positive-sum game” outcome for all concerned, whereby those who work for the NHS will benefit in being able to identify older peoples needs more accurately, through being able to involve them in decisions without making value judgements about the patient influenced by ageism. Additionally, the government will benefit by being able to maintain effective hegemony over its subject class and older people will benefit through the first step being taken towards ending ageism within the NHS.

Example 2: The National Patient Safety Agency (NPSA) have been making representation to Trust and the Department of Health to consider disciplining employees who do not report patient safety incidents, as a mechanism of encouraging more openness, transparency and accountability for mistakes. At present studies show that the ‘blame culture’ within the NHS is making employees resist reporting patient safety issues. At present the only mechanism that patients have in making there voice heard in addressing complaints and issues of concern is through mechanisms of complaints and redress of grievances. These mechanisms can be found in Professor Wilson “Being Heard” (The Wilson Report 1994), which is now considered the Health Complaints Procedure. The stages within the Health Complaints Procedure are: first approach the internal complaints procedure; secondly seek judicial review; and thirdly contact the health ombudsman.

The internal complaints procedure for addressing the public and patients grievances can be found in the “Service First” initiative, which was first launched by John Major’s administration in 1991 as Citizens Charter. However, its re-lunch under Tony Blair as “Service First” contains a document with what the service user can expect from the service, it also provides mechanisms to feedback where the ‘consumer’ feels the service has not been satisfactory or maladministration had taken place. PPI Forums should be asking the question: Are the number of patient safety complaints and feedback issues, which are reported via the internal complaints procedure, Independent Complaints Advocacy Service, Patient Advisory and Liaison Service and other complaint mechanisms greater than the number of patient safety incidents reported by NHS employees?

If it is the case that the number of complaints are greater than those reported by staff. It would seem there are problems with the NHS internal reporting of incidents. It must be acknowledged though that the internal mechanism for complaints are criticised by Michael Hill as not being constructive for the complainant, for example, often when a complainant asks for a manager the person who invariably appears will not be the manager but a figure to defend the actions of their colleague or decision. Also criticism from the medical staff, have claimed that this procedure acts as a scapegoat and normally ends up with the most junior member of staff being appropriated to incident and blamed. Moreover, with the phasing out of the “medical superintendent” there is no one of a higher position than consultants, therefore the unproductive route of judicial review and quasi-judicial review is the next step in the patients course of seeking redress.

However, Judicial review is not short of its own criticisms as it puts the onus on the patient to provide detailed evidence, and the courts are a very expensive process. Additionally, legal aid is difficult to obtain as it only provides for cases that a “reasonable man” would take to court. Therefore, conditions of the Hospital affecting patient safety would not be financially viable to bring to the courts attention for a complaint to obtain judgement. However, in cases where a patient is able to obtain a judgement, the NHS normally has to pay out in compensation, which is not ultimately beneficial or in the interest of the public and patients as it takes money away from the delivery of health services. Therefore PPI Forums should also be asking the question how much has been paid out by the NHS in settlements out of court and in court for patient safety incidents? And how many Ombudsman cases have been held up as maladministration and reported as patient safety incidents?

Two reports by the Department of Health: “An Organisation with a Memory” (Department of Health, 2000), and a follow-up report “Building a Safer NHS for Patients” (Department of Health, 2001), found that across the UK 10 per cent of UK hospital admissions in the acute sector resulted in a patient safety incident. From these incidents 50 per cent were probably preventable from learning from mistakes and not punishing them. I have particular concern for older patients who are the greatest users of acute care service, and are not as able to pursue complaints and redress against patient safety incidents. ‘Older People’ are also a particular social group I have commitments to represent. Moreover Children would be extensive users of Acute services and are also a group whose voice is poorly represented in reporting incidents and complaints.

A similar scenario of disciplining staff who failed to report safety incidents was implemented by British Airways in the early 1990s where staff were not normally subjected to disciplinary procedures when reporting incidents, but were if they were found to have failed to report incidents. The number of incidents reported increased from 4,500 in 1994 to 8,000 in 1999, but the number of high-risk incidents fell and a learning from mistakes culture developed to help improve services.

If after answering these questions and conducting research this is as big of a problem as I consider it will be, then PPI Forums should recommend that the NHS should discipline employees who do not report patient safety incidents, as they are covering-up and preventing improvement in performance.

Bibliography

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