You are here: Home > Healthcare policy
Health policy review
Summer 2006
Issue 2: Different approaches to reforming health services
Does the emphasis on choice in recent policy leave any space for voice? - Barbara Wood and Tom Smith
When making decisions through markets, individuals choose what suits them, given their private budget constraints. Politics, by contrast, is irreducibly collective and complex, with constraints imposed from outside. It is seldom an experience of ‘self-actualisation’, or getting what you want. If you don't like something in a shop, you go elsewhere (‘exit’), but in politics the only way to get something is to make your views known (‘voice’) which carries higher costs and may still result in you having to accept a decision you didn't support [go to note 32].
Introduction
This paper examines the current state of patient and public involvement (PPI) in the NHS, some recent history, and the current challenges, in order to develop a clearer idea of how PPI might develop in the future.
It is widely accepted that current health policy represents the most significant set of changes since the inception of the NHS in 1948. A market has been created for providers to compete with one another for patients. In primary care, organisations are being encouraged to develop community services that would reduce the need for hospital admissions. This adds up to major reconfiguration, which cannot proceed in the face of community opposition.
Encoraging PPI is extremely important at this time. One of the biggest disappointments in the recent health white paper is the absence of mechanisms for patients and the public to be meaningfully involved in these significant service changes. The chair of the soon to be disbanded Commission for Patient and Public Involvement in Health has said it is inconceivable that the government should press ahead with some of the biggest changes in NHS history without an effective system for patients to be heard.
Many worry that the notion of patient involvement has become distorted and now means not much more than a consultation on choices; consultation has been confused with engagement. This proxy for meaningfully involving patients and the local community does not allow for informed debate.
Some believe that Local Overview and Scrutiny Committees are ideally placed to hold local institutions to account, but many are not aware of their existence and there is no established process for these bodies to involve patients and the public in their deliberations and decision making process.
Given that future decisions will be taken locally, and will not be subject to national debate, the politics of health policy is also increasingly being localised. Yet there is no local political forum in which to debate options at a time when there is a real need to get into rich debates about the future of local services. Local and national media have a role to play in helping to frame this debate.
This paper has been inspired by a seminar organised by the BMA’s Patient Liaison Group. It discusses: (1) the rise of consumer health groups and the challenges they face in influencing policy; (2) the current challenges which must be faced in order to achieve effective PPI; and (3) suggested changes that would help PPI to have a greater impact on policy and become more meaningful for individuals.
The rise of consumer health groups
There is a thirst among patient groups for much greater engagement with health services and the policy development process. During the 1990s, the number of health consumer groups grew partly as a result of a clamour for better representation in the health service and also a view that services were not as responsive to individuals as they might be. There was an increasing desire to raise particular issues and to be represented in what is often perceived to be a difficult-to-influence health system.
Health consumer groups are most often voluntary organisations that seek to promote and/or represent the interests of users or carers at the national level. The word ‘consumer’ is often preferred to ‘patient’ in these groups because it is thought to better capture both individual and collective perspectives. The groups that have developed tend to be either condition-based (eg for cancer or asthma sufferers), populationbased groups (focusing on children or the elderly, for example) or they can be formal alliance organisations (such as the Long Term Medical Conditions Alliance). The nature of groups is changing all the time and a recent trend is the promotion of carers’ interests.
Health consumer groups are able to draw on significant social and political resources in order to gather information and to influence services. They claim legitimacy on knowledge grounds, because people with long-term conditions or carers are often experts in their own illness and keenly understand the potential of self-management. They are able to understand and draw upon personal experience to illuminate the realities of service delivery for individuals. Patient groups are therefore able to articulate the needs of the people they represent and develop links to networks of knowledge and influence. The heads of these groups can be thought of as new kinds of social leaders, seeking to make an impact on behalf of those they represent.
In addition to the formation of representative consumer health groups, there has been a drive to enhance lay involvement in all governmental structures. This has led to a parallel pressure from active individual service users. This has extended to the creation of patient stakeholder groups in professional organisations such as the BMA, the GMC and the medical royal colleges.
Within NHS trusts, there have been positive initiatives in places. Yet efforts to achieve PPI have been dogged by resource problems: groups have struggled to achieve their ambitions because of the little available support to draw upon.
Recent history
One of a number of challenges facing the further development of patient groups and lay involvement are questions about whether their voice is legitimate, in the sense of accurately representing the views of the group it purports to. There is a view that the ‘normal’ patient voice is superior to that of organised groups and that leaders of social groups are ‘troublemakers’ that are not truly representative. This perspective is often used to justify the marginalisation of patient voices. This can be seen by efforts to recruit ‘non-aligned’ individuals to patient liaison structures.
Since the abolition of Community Health Councils in 2000, there have been a number of attempts to capture the views of ‘real’ patients. However, mutual suspicion has not been reduced by stopstart policies in this area, which mean that PPI can feel like a perpetually exploratory activity. At national and local levels, PPI initiatives have begun and then ended without always achieving the aim of establishing mutually-supporting and sustainable relationships between services and users. For example, the Commission for Patient and Public Involvement has recently been decommissioned by the same government that had not long before set it up.
Recent changes in PPI structures can fuel cynicism that PPI is not truly a major ambition for the NHS. This situation makes some question whether anyone can have confidence that the government is credible in claiming to want to involve patients. Why should anyone believe that a speech by ministers promising PPI next month will be more credible than one last year that failed to change anything?
Current challenges
Currently perhaps, the biggest threat to the development of patient groups and the PPI agenda more widely is if people become cynical about engagement, believing that it changes nothing. At present it is not clear what the government wants from PPI.
Nevertheless, policy continues to state the importance of PPI and patient voice [go to note 33]. Given this commitment, it is timely to set out the challenges that must be faced in order to achieve the ambitions of effective PPI. Change is needed to:
- balance ‘voice’ and ‘choice’
- develop voice mechanisms that are an effective part of decision making (at the time of writing, we are awaiting an announcement on proposals for local systems, though a new national resource centre has been announced).
- provide meaningful information about available services and their quality, particularly as the system of provision becomes more complex
- further develop the doctor-patient relationship to enhance patient and public involvement.
Failing to effectively involve patients may derail health reform, given the pressures, within policies, to reconfigure services and the requirement to consult on these.
Many worry that the trend in recent policy is to place more emphasis on patient choice rather than voice.
This has seen a shift in central policy towards employing market forces in the health service and promoting patient choice as a way of doing this. This can be taken as an apparent acceptance in government that consumer-style choice is the most effective way of making organisations responsive to those that use its services. As currently configured, policies to promote patient choice are therefore quite narrowly conceived and the policy aims to pressure providers more than it promises to empower patients.
The economic consequences of choice, combined with Payment by Results, is that those institutions that have costs above the national tariff will be under great pressure to reduce costs or close services. Even those providers whose costs are close to the tariff could be significantly destabilised by even a relatively small change in referral patterns resulting from choice mechanisms.
It is clear that the government wants providers to be more responsive and if some providers prove not to be as popular as others, then the quasi-market that is being established will signal this. But voice is needed as a balance to choice because the sum of individual decisions may not be desirable to local communities. Choice and voice represent different public decisions and a framework is needed to face these perspectives against one another.
However, with most of the current emphasis on choice, some worry that future service configuration will be based on individual referral decisions. In current policy, there is a struggle to balance a view of the patient as both a consumer and citizen. How do we square the different answers to questions people give when thinking as an individual and then as a member of a community? How do health services talk to communities?
Local voice mechanisms are needed
Given the lack of continuity and progress with regard to developing PPI it will be necessary to re-evaluate its perception. There is an urgent need to develop local voice mechanisms, particularly given the level of reconfiguration that some suggest is likely to take place. The new national Patient and Public Involvement Resource Centre, announced in May 2006 is only a starting point in developing local capacity. Health minister, Rosie Winterton said: ‘the Centre will give encouragement to those organisations which lead the way in PPI and support and advice to those who need it’ [go to note 34].
Within organisations and across the NHS are individuals that seek to promote PPI. They are not always successful because they compete with louder voices shouting for managerial attention to be paid to other priorities. This is reflected in the view of those advocating the patient view, that they feel they have to keep persuading colleagues that involving patients matters. They have found it difficult to create incentives for organisations to take engagement seriously.
The experience of PPI thus far is that the process of engaging with all those involved is difficult. Some further work is needed on thinking through new ways for patients to engage with managers and with clinicians.
Better use of information for and from patients and the public
NHS trusts need to be given support to involve patients in a variety of ways. There needs to be a concerted effort to help organisations engage their patients and the surrounding community in decisions about their health and the pattern of healthcare services. They also need to reach out to those who are unlikely to be heard.
Currently, the mainstay of activity, in terms of gathering patient views, is nationally driven, through patient surveys. Individual organisations now have information on what their patients want, but there are questions about how well they are acting on the data. Analysis of such data can help organisations change practice. For example, a statistic like, ‘5 per cent of outpatients were never told their test results’ can be given extra weight from associated comments such as, ‘I feel ignored and let down’.
Surveys can give insights into the broad things patients want from services. They want: fair access; effective treatment delivered by staff they can trust; involvement in decisions; respect for preferences; clear information; physical comfort; empathy and emotional support; continuity of care and smooth transitions; more information on medication, and more help with rehabilitation.
It is interesting that while the survey data offers a clear direction for organisations, real progress will only result from organisations pursuing a more qualitative understanding of experience and consequently more qualitative engagement is needed. How will organisations sustain a dialogue with patients to develop this? How can organisations ensure they reach the right people? How can policy makers and patients judge whether engagement has made any difference?
Developing patient-doctor/public-medical relationships
Doctors and patients relationships have been considered by some as problematic. There is a conflict between empowerment of patients and doctors, which has grown out of a tradition that is critical of medical power.
Increasingly, patients and doctors need to work together to develop services and a relationship is needed that allows their different perspectives to be aired and valued in the decision making process. There is a need to emphasise the partnership between patients and doctors in developing PPI. From the patients’ perspective, as choice increases, they are likely to want to work with doctors in reaching decisions. From the doctors’ perspective, an informed patient who is actively involved in their own healthcare is a better patient.
Over recent years there has been renewed emphasis on the changing context of professionalism and ways in which the patient-doctor relationship might develop. It has been suggested that doctors are: (a) sympathetic to individuals and familiar with the health service its problems and issues; (b) have specialised knowledge of medicine; (c) and are signed up to a professional code of values and ethics. For patients, corresponding knowledge exists: they have (a) individual experience of treatment; (b) they have collective and specialised experience of particular conditions; and (c) patients can represent patient values on collective interests, such as confidentiality.
As Angela Coulter has recently argued, it is necessary, for a number of reasons, for a patients’ right to make autonomous decisions to be both understood and facilitated by clinicians: ‘meanwhile patients need to understand the limits of medical care and the uncertainties surrounding the effectiveness and outcomes of most interventions. They must be actively encouraged to use health services appropriately and responsibly’ [go to note 35].
Failing to engage patients will derail health reform
PPI could play a much wider role than has historically been afforded. Reform could be better developed with patient involvement. There is a need, for example, to fill the democratic deficit and engage the public in discussions about resource decisions.
The recent financial crisis indicates potential future dilemmas and the need for health services to begin to meaningfully engage with patients. How should the NHS prioritise its activities as money becomes tighter? If a GP cannot prescribe a drug then they need to be open with patients about the reason for this.
What changes would further develop PPI?
PPI is a complex process, but is increasingly unavoidable if the health system is to retain the confidence of its users.
Recent initiatives provide some experience to draw upon in thinking about how to improve PPI. A key lesson is that PPI requires perseverance. Constant change can mean abandonment rather than postponement to those developing, implementing, delivering and receiving care.
The need for a variety of involvement
Patients and the public are not the same. They do not all want the same things and may not want to engage with the NHS in the same way. Some people may wish to be involved with debate on designing services, to defend or promote a service; others will be interested in quality indicators or the adoption of a particular approach or information to support self-care.
It would help PPI to have a wider range of mechanisms because people are individuals and vary in the way they might want to have a say in the health service. Some might be happy with filling in a survey, while others will want much greater involvement. An individuals’ preference for involvement is likely to vary with what is happening in their own lives and their experience of health services.
Supporting local discussions on changing services
There is a need for a greater balance within patient involvement, between surveying groups of patients, for example, and developing participatory mechanisms within decision making bodies and hospital providers.
Overcoming the challenges of involving people in discussions about local services will not be straightforward and will not be solved only by the creation of local forums. It will become difficult to take decisions without meaningful engagement and people will not be satisfied with a consultation exercise that offers limited options rather than open discussion about the forces that are driving change.
Even in Scotland, where mechanisms exist and there is some public acceptance that services have to change, difficulties remain. This is because it is difficult to resolve differences when local people have strongly differing views. In Lanarkshire, for example, one of three A&E units must close. There are campaign groups defending each.
Reconfiguration will involve difficult decisions that are important to get right. In the context of limited resources, how can the NHS ensure that, in consultation, patients identify what they need rather than what they want, how can they reach a single view from a population that has quite different views?
It may be necessary to develop forums across local health economies in order to facilitate difficult discussions and political debate between differing views, and to develop some principles on which to guide changes in services. Some support will be needed to make this work; facilitation will be needed.
The potential for commissioners to develop PPI
A widely acknowledged challenge in PPI is how to sustain involvement. This has so far proved illusive. The recent emphasis on getting commissioning right in the NHS may present an opportunity to change this.
It has been noted that often patients are most interested in talking about health services when they perceive them to be under threat. It is not so easy to involve patients in dialogue about ways to improve services that they do not feel are under threat.
For some, the key to PPI is in providing links between patients and commissioners rather than with providers. If providers are to purchase services on behalf of patients it makes sense that commissioners talk to them about services and develop relationships with them, so as to increase their knowledge about the quality of services commissioned.
Within England, practice-based commissioning offers some opportunities to strengthen links between patients and commissioning clinicians. This will both aid public involvement in the design of local services as part of developing choice and these links can be used to encourage self-care, as a part of the demand management role that is becoming more important.
Developing partnerships with provider organisations
There is a need to develop relationships between provider institutions and patient groups. This may work best where specific questions are asked about particular services or groups of services that are closely related.
In some cases, patients are seen as problematic and there is understandable unwillingness to address tension. However, some tension between these perspectives is inevitable and the challenge is to ensure this is creative rather than destructive.
A more clear regional and national focus for patients would strengthen PPI
Given the need to very quickly establish local mechanisms for patient involvement and engagement and the speed at which difficult decisions are approaching local communities, there may be some scope to draw on the established expertise of health consumer groups.
Health groups could play a critically important role in providing one of the links between services and current and future users and carers, at a national level, a regional level, within provider organisations and with newly emerging commissioners. Although these bodies are sometimes seen as having vested interests, they could play a critical role in engaging local people in difficult discussions.
There is potential to pool resources across different groups and local areas in order to engage patients and the public in different areas. Alliances of groups could share expertise on how to relate to different groups. There may be potential to share managerial capacity and for voluntary groups to play a greater role in the education sector and perhaps also provide some services.
In addition, there are strong arguments for the formation of a national group for the patient perspective. Firstly, there is a risk that patient voice is becoming fragmented and a national forum would allow the opportunity for a broader patient view to be developed that could feed into policy. At present there is a lack of structures to enable regular dialogue between groups. Secondly, while patients do not want to see an elite body formed, many would like to see the development of a broad representational group that speaks for patients. There is a view that a new kind of patient organisation is needed.
The lack of an overarching structure to support widely fragmented grass root groups prevents the formulation of a coordinated message. Some wonder whether there should be an equivalent of a Royal College for Patients that is credible and independent of government.
Conclusion
In order to develop PPI, resources are needed at national, regional and local level. Structures need to be flexible and independent. Developing PPI will require a sustained effort and continued engagement.
The determinant of effective PPI is that participants feel that their voice is listened to and makes a difference. This is a key challenge for policy in England, particularly given imminent discussions about service redesign.
Across the UK, policymakers have similar aims. They wish to reconfigure services, move more care into communities, enhance self-care and better manage those living with long-term conditions. Each country is developing this in very different ways. In England, market forces and consumer-style choice is driving change, but there is little space for patient voice. In Wales, Community Health Councils remain. In Scotland, a national Scottish Health Council exists to monitor the extent to which health boards engage local communities and to promote this activity. In Northern Ireland, there are proposals to introduce a new single national body, the Patient and Client Council.