Power to the patients?
The government's plans for patient-centred healthcare are going in the wrong direction.
In the ongoing discussion about reform and patient choice in the UK National Health Service (NHS), what tends to be forgotten is that some major changes have already taken place – which, while sounding less than glamorous, have already had no small impact upon those working in and using the health service, and their relationships with each other.
Public and patient involvement (PPI) is a relatively new aspect of healthcare. On the surface it seems to be progressive – enabling people who use the NHS to have a say in the way that it is planned and delivered, and supporting professionals to achieve this aim. When you scratch beneath, however, the picture is more complicated. In fact, the PPI agenda seems to have created more problems than it has solved – and does not benefit patients, the public or healthcare professionals.
The new system of patient and public involvement was legislated for in the Health and Social Care Act 2001 and the NHS Reform and Health Care Professions Act 2002. It set out to address what the government perceived to be the major problem with the NHS – a lack of openness, with patients kept at arm’s length by over-powerful professionals (particularly doctors) – as well as to respond to growing public expectations of the service. This is said to reflect a radical change in the way that the government attempts to engage with people on the issue of health, improving healthcare by the creation of a dynamic, consumer-driven health service, with patients at its heart and choice and personalised care the order of the day.
PPI is promoted as a means of improving and modernising the NHS in the interests of patients – but it seems to be motivated more by political considerations about connecting with a disenfranchised electorate than it is by health priorities or public demand for change. The consequences are likely to be a further undermining of trust between health professionals and patients, and an added strain upon the relationships between health professionals, who will find themselves pitched against each other.
The NHS has been a millstone around the neck of politicians, irrespective of their political persuasion, for some time; and with New Labour’s election in 1997 it was clear that something had to change. Recognising the popularity of the NHS with the electorate, the Tories had poured money into the health service and instituted a number of changes to try to modernise it, with little demonstrable effect. An increasing number of managers had been employed to try to make it more efficient and business-like, yet the autonomy and power held by doctors remained a barrier to more aggressive changes. Breaking down the influence of doctors and the traditional medical establishment soon became a priority for New Labour’s new regime.
The government’s vision for a ‘patient centred’ NHS was first described in the government’s ‘NHS Plan (2000)’. It represented the desire to ‘move away from the system where there was little openness and where patients and others were kept at arm’s length’ (1). The 2002 document, Delivering the NHS Plan, described how patients, carers and the general public would influence the delivery of care at every level of the NHS. The new orientation around patient and public involvement is being focused across five new bodies – while the Community Health Councils (CHCs), which were known as the ‘public watchdogs’ of the NHS since 1974, have been abolished.
— Patient Advice and Liaison Services (PALS) offer on-the-spot advice and support to patients. They intervene with staff at all levels on behalf of patients, and help to get issues resolved quickly.
— Patient and Public Involvement Forums (PPIF) are staffed by volunteers and will monitor all of the services provided or paid for by the NHS. They are being established in every NHS trust but will be independent of them, and will be represented on trust boards at non-executive director level.
— Independent Complaints Advocacy Services (ICAS) are intended to give people who want to complain about the NHS independent support to do so.
— A national Commission for Patient and Public Involvement in Health (CPPIH) has been set up to fund, staff and performance-manage all PPIF and ICAS. It is supposed to carry out reviews of services from patients’ perspectives and to make recommendations to the secretary of state. (According to a recent report, however, the government is planning to abolish this commission later in July 2004, as part of its drive to cut costs and reduce bureaucracy (2).)
— Local Authority Overview and Scrutiny Committees (OSCs) will give local authorities power to scrutinise health services within their areas (3).
With this proliferation of new organisations, the government is sending a message that the NHS can and will be brought to heel. Patients are encouraged to believe that the overriding problem with the health service is the staff, rather than anything to do with broader health policy; and that they should exercise their consumer rights by complaining more, with the support of quasi-official watchdogs. Volunteer lay people are considered qualified to monitor NHS services via PPIFs, while local authorities are helping to tackle the perceived democratic deficit by scrutinising the NHS and reporting findings to their MPs. What any of this has to do with improving actual healthcare is anybody’s guess.
With the new Commission for Health Improvement (CHI) inspection system, the government also has NHS managers by the throat. This is a similar process to the OFSTED inspection system in schools. Public and patient involvement (or PPI) in NHS business is placed top of the priority list in the inspection process, and has to be demonstrated throughout the organisation and verified by staff and patients. The outcome of the inspections determines the trust’s star ratings, which can range from zero to three. Trusts can be awarded if they achieve, and penalised if they do not. The pressure to jump through the PPI hoops is therefore enormous.
In April 2004, the CHI became the Commission for Healthcare, Audit and Inspection, chaired by Professor Sir Ian Kennedy, who led the inquiry into the retained organs scandal at Bristol Royal Infirmary. In his report, Kennedy had recommended that ‘the priority for involving the public should be that their interests are embedded into all organisations and institutions concerned with quality of performance in the NHS: in other words, the public should be “on the inside” rather than represented by some body “on the outside”’ (4). The commission brings together functions of CHI, the Audit Commission and the National Care Standards Commission, ‘to provide for the first time a single, independent and authoritative voice on the quality of health care in England and Wales’.
While staff are encouraged to think of these new organisations as a means of working in partnership with patients, the reality is that many feel policed. The PPI reforms threaten to undermine further the self-confidence of health professionals. They are now being deliberately pitched against patients and the public, and do not feel that they have recourse to redress. It has been made clear that MPs, and ultimately the secretary of state for health, will intervene, if NHS organisations do not play ball.
This policing agenda comes on top of another major change – the end of self-regulation of doctors, nurses and other healthcare professionals. The tradition of professionals regulating their peers was considered problematic in an NHS that needed to be subject to external regulation, control, and monitoring through clinical governance and clinical audit. Here again, doctors were considered to be a particular problem – as summed up by Professor Ian Kennedy’s criticisms in the Bristol Royal Infirmary Inquiry, when he accused them of paternalism, of not being team players, and for clinging fiercely to their ‘club culture’ to the detriment of patient care (5).
The General Medical Council’s defensive reaction to such accusations meant that there was little, if any, opposition from doctors (or any other professional group) to the introduction of the Council for the Regulation of Healthcare Professionals in April 2003. This new body was justified on the basis that patients needed an independent regulator to protect them from health professionals. The council is charged with overseeing all aspects relating to the regulation of professional life: education, registration, training, continuing professional development, revalidation and discipline. The demoralising effect upon healthcare professionals is clear.
The ‘patient-centred’ reforms also reflect an abdication of responsibility by the government for providing a decent health service. Despite New Labour’s re-election in 2001, it struggles to sustain a relationship with an electorate that feels alienated, disconnected and disillusioned. The government’s desperation to find ways of engaging with the public on issues close to its heart has led to a feverish obsession with healthcare. By giving the public a greater stake in the running of the NHS, and offering mechanisms through which it could have a say, the government hopes to use healthcare to do what the ballot box has failed to achieve.
Whether this ‘democratisation’ strategy works as an exercise in political re-engagement is doubtful. What it clearly does do, however, is distance the government from its own responsibilities for running the health system. The discussion about granting Foundation Trust status to some hospitals is a case in point. Promising local people a greater say in the running of ‘their’ hospital confuses the everyday management of the health service with the political role played by publicly elected representatives. By making a big deal out of including members of the community in what should be political and professional decisions, it is implied that the public only has itself to blame when certain things go wrong.
What is likely to be the impact of all this upon the healthcare that people receive? Despite all the reforms that have taken place over the past few years, and the vast amounts of money invested, the NHS remains inefficient and still does not meet people’s needs. Meanwhile, the constant references to the amount that is being invested and the increase in staff has fuelled public expectations, making it less and less likely that the health service will meet demand. Frontline staff in particular feel the pressure.
Sceptics say that the only constant in the NHS is change. It is certainly the case that NHS managers and professionals are reeling from ongoing and constant reforms and targets, and no longer have the will to challenge them. A change of government is dreaded because this inevitably means yet more changes. Consequently, a culture of acquiescence has developed. Doctors and consultants, the traditional opponents of reforms, are capitulating. Trade unions and professional bodies are almost indistinguishable from NHS managers in their outlook and concerns. In attempting yet more reforms, the government is therefore pushing at an open door.
The most striking aspect of all this is how much health professionals have bought into the ‘working in partnership’ approach of this new agenda. They are encouraged to believe that a member of the public’s knowledge is on par with a health professional’s – a patient’s lived experience of their condition is seen as just a different kind of knowledge to medical science. This is exemplified most starkly in the Expert Patient Programme (EPP), a self-management course for people living with a long-term or recurring illness, and the first government-initiated programme of its kind. Patients participating in the programmes might traditionally have belonged to ‘self help’ groups.
The message promoted to health professionals about EPP is that patients are experts in their condition and that this needs to be acknowledged in their care and management. The sub-text is: don’t assume that you have all the expertise, and you should treat patients as equal partners in care. The government has committed itself to mainstreaming the programme throughout the NHS by 2007.
The initiative to copy clinicians’ letters to patients is another part of the government’s policy to increase patients’ involvement in their care and treatment (6). This is based on the assumption that health professionals do not communicate effectively with their patients and that patients will want to receive correspondence relating to their clinical management and care. This is fraught with difficulties – generating anxiety in patients when correspondence is not adequately understood, further stretching limited resources, and possibly compromising communication between clinicians because they fear speculating about possible diagnosis when they know that the patient might read it. Not surprisingly, there is passive resistance to this initiative, with many clinicians quietly refusing to implement it.
This undermining of medical professionalism is deemed to be a good thing – even by some healthcare professionals, who believe that doctors have for too long acted as if they were superior to others, and have not been accountable enough. While there is more than a grain of truth in this view, it is sad to see health professionals jump on the bandwagon and side with managers against their own professional interests.
This has further contributed to the undermining of the professional confidence of doctors, who are becoming increasingly wary of giving a clinical lead, of taking risks, and of making diagnoses and decisions based on their clinical expertise and judgement. Instead they refer patients to more senior doctors, they offer information, prevaricate, and do not always give their professional guidance to patients about the best way of managing their condition, even when asked. Is this really a ‘patient-centred’ outcome, when all is said and done?
Brid Hehir is the lead for patient and public involvement at Camden Primary Care Trust, London. She writes here in a personal capacity.
(1) Learning from Bristol: the Department of Health’s response to the Report of the Public Inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984-1995, DoH, 2002
(2) ‘Reid scraps patients’ agency six months on’, The Times, 1 July 2004
(3) Patient & Public Involvement (PPI): The New Arrangements, DoH, 2003
(4) ‘The Report of the Inquiry into the Care and Management of Children Receiving Complex Heart Treatment between 1984 and 1995’, July 2001
(5) Bristol Royal Infirmary Inquiry report published today, 18 July 2001
(6) DoH guidelines on copying letters to patients
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