House of Commons - Public Administration

Select Committee on Public Administration Written Evidence

Memorandum from the British Medical Association Patient Liaison Group

EXECUTIVE SUMMARY

— In relation to healthcare, the majority of people want a say in how local services are run but, more often than not, have never been asked for their input. In addition they feel that they have no power to influence local service development.

— Continued interference by government with formal structures of PPI has damaged their effectiveness, with the naivety of the LINks proposal being an illustration in point. It is clear that the authors of government proposals and legislation do not understand how meaningful patient and public participation and involvement work.

— The key is resources and capacity. PPI needs to be properly funded to enable whatever the organisational structure for PPI is at the time to be able to consult with the community it serves. This means engaging with service users, taxpayers and groups who traditionally do not, or cannot, get involved.

A stronger local voice

— It is not the case that most people do not have the intellectual ability to participate because it is clear that they do. People can make rational and reasoned decisions about complex matters when given the information and time to do so. (The two case studies given in this response are examples in point.) Too few ordinary members of the public have this capacity, and much more should be done to build it. Without building capacity, LINks will go the same way as their predecessors because they are fundamentally flawed.

— PPI does not need to be prescriptive about methodology, but should consider a number of principles to underpin such processes, including that:

— it should be a collaborative process with all voices in discussion helping to develop partnerships between patients, the public, health professionals and policy makers;

— the process should be ongoing and not just a periodical or one-off exercise;

— feedback mechanisms must be built into all PPI activities;

— the processes must be transparent;

— PPI activities must be accessible to all relevant groups; and

— efforts must be made to specifically target hard-to-reach and marginalised groups in order to accommodate equality and equity within the PPI structures and the relevant health services.

ABOUT THE BMA

1. The British Medical Association is an independent trade union and voluntary professional association which represents doctors from all branches of medicine all over the UK. It has a total membership of over 138,000.

2. The evidence for this select committee inquiry was compiled by the BMA Patient Liaison Group and endorsed by the BMA. The Patient Liaison Group consists of eleven lay members appointed for their knowledge and interest in different aspects of healthcare, and five doctor members. The lay members do not represent any particular patient group, but bring a wide overview and knowledge of health issues to their discussions.

Not all questions have been answered. In response:

Q. What role do measures of customer satisfaction have in assessing the standards of public services? How should user views be monitored? How can the cost effectiveness of user surveys and feedback mechanisms be assessed?

3. The public is concerned about the future of Britain's public services with more than half (57%) thinking that government policies will make public services worse. In health, almost half (46%) think that the NHS will get worse over the next few years. Only one in five (19%) thinks that present government policies will make the NHS better. [90]

4. A recent survey found that the vast majority (90%) of those asked agreed that local people should have a say in how local healthcare services are run, with three-quarters (74%) wanting a say in how their GP surgery and local hospital are run. The same survey found that three-quarters (76%) of people had never been asked about what they would like from their local services, and half (50%) felt they had no power to influence service development in their area. [91]

5. The public has had its expectations of the NHS vastly raised as a result of investment and of the government telling people that they can expect more and offering a more consumerist approach to healthcare. Choose and Book is an example of this, where patients can literally vote with their feet by choosing where they want their care delivered. Choice in principle is good, and wanted, but it needs to be properly informed. Words such as "empowerment", "a need for voice" and "patient-centred" are used, but need defining and given greater meaning. At present, the only choice is a choice of hospital.

6. At present, policy on patient choice risks worsening inequalities in healthcare. Wealthy and educated populations will be the main beneficiaries. The rise of consumerism and the introduction of markets have created additional drivers for choice. There is no evidence that increasing patient choice will, of itself, improve the quality of patient care. Indeed, some studies suggest that increasing choice may result in a deterioration in the quality and cost-effectiveness of services. [92]The aim of choice should be in empowering patients, improving outcomes and contributing to reducing inequity. [93]

7. How far patients behave as consumers is suggested in a recent briefing paper to depend on the severity of their illness, the nature of the procedure involved and their individual circumstances. [94]As boththe severity of the illness and complexity of the process increase, so patients refer more decision-making to a well-informed and trusted health professional. The limited choice so far offered—a choice of hospital—is only of relevance where there would otherwise be a long wait for treatment, or where there is a history of poor service. GPs are often unable to recommend a consultant at a distant hospital whom they do not know, so the patient may be making an unsupported decision.

8. This emphasis on choice means that future services could be based on individual referral decisions. There needs to be a balance between the individual as a consumer, using services, and as a citizen, playing a part in how services should be delivered: a balance between choice and voice.

9. It should not be forgotten that choice in healthcare is not a choice most people want to make. It is not a pleasurable choice, and the choice for most would be to be completely well and not to need the health service at all. What patients want is good quality treatment and care, delivered close to home, by a professional team that they trust. In turn, doctors and other healthcare professionals want the resources and autonomy to be able to deliver that care.

Q. What constitutes best practice in responding to complaints about public services? and Is information about complaining easy to find and accessible?

10. There are currently three-tiers to the complaints structure:

— to the NHS provider, with or without the support of an Independent Complaints Advocacy Service (ICAS);

— to the Healthcare Commission, following an unresolved complaint to the provider; and

— to the Health Service Ombudsman, following an unresolved complaint to the Healthcare Commission.A complaint can also, depending on its nature, lead to litigation and be taken through the legal system.

11. ICAS aims to support patients and their carers wishing to pursue a complaint about their NHS care to agreed national quality standards. The Healthcare Commission becomes involved if a complaint is not resolved through the local NHS complaints procedure, and the Health Service Ombudsman reviews a complaint relating to the administrative processing of the complaint.

12. In addition a Patient Advice and Liaison Service (PALS) has been established in every NHS Trust and primary care trust (PCT). PALS are not part of the complaints procedure but might be able to resolve concerns informally and should be able to guide someone through the complaints procedure.

13. The Citizens Advice Bureau (CAB) was a contracted provider of ICAS in six of nine regional government areas in England. In 2005 it published a report The pain of complaining which looked at the NHS complaints procedure. [95]It found that the roles of its constituent parts were lacking in supporting patients who faced:

— "difficulties in finding out how to access the complaints system, because of a reluctance by Trusts to advertise the procedure and support services available through ICAS;

— lengthy delays at every stage of the process, as both Trusts and the Healthcare Commission fail to deal with complaints within their targets; and

— a culture which is defensive rather than responsive, failing to provide complainants with explanations of what went wrong, or apologies when mistakes have been made."

14. In particular the standard of the patient-facing entities, PALS and ICAS, were found to be variable. PALS are not run to any national standards, are often underresourced, and are used by services to capture complaints so they can be dealt with informally rather than alerting people to the formal complaints system. In regard to ICAS, where the complaints procedure works well it can be a force for making things better for individuals and the service. Where it works less well, it increases frustration and distress and the chance of the complaint being taken through the legal system.

15. The pain of complaining makes a number of recommendations amongst which it asks that the Department of Health set a national standards framework for complaints handling and that the Healthcare Commission ensures compliance with these standards through regulation. It also recommends that Trusts develop a mechanism to obtain feedback from patients who have used the complaints process and that, through OSCs, changes which should be made as the result of a complaint are implemented.

16. The Department of Health did not renew the CAB's contract as the main provider of ICAS and so the complaints system in many areas of the country is currently unsupported. This is a very serious state of affairs.

17. The 2005 Health Service Ombudsman report into the NHS complaints procedure in England also identifies weaknesses in the complaints system, including:

— inflexible processes;

— timescales not centred on patient needs;

— a lack of capacity and competence of staff in dealing with complaints; and

18. Often the complaints system fails at the first hurdle because patients simply do not know where to turn, in particular where a patient journey spans a number of providers. There should be a single portal for all complaints, the structures of which must be sufficiently resourced. Patients need to be properly advised and independently supported and should feel that it is safe to make a complaint and that it will in no way jeopardise their current or future care. Complaints procedures and structures are often complex and so there must be adequate investment to ensure that support staff are of high quality and sufficiently trained and equipped.

19. Principles of learning from mistakes and continual feedback should be central to all regulatory mechanisms. It is important that a single body at local level should be responsible for drawing together the monitoring work of complaints. There may be a danger that individual problems, while resolved for that individual, fall through the gap in terms of the bigger picture. Patients who complain are usually seeking an explanation of what happened, an apology if appropriate and reassurance that recurrences of the problem they encountered will be prevented. Complaints monitoring should also capture the failing of policy as well at that of care. The new Local Government and Public Involvement in Health Bill does not address patient complaints. [97]

Q. Should users be more directly involved in service delivery? If so, how can this be achieved?

20. Currently, there is a democratic deficit. It should be a fundamental tenet of organisations that those paying for a service and those affected by it have a right to be engaged in its design and development. One problem with public involvement is that it is, at present, too often merely placatory.

21. Public involvement should be necessary for decisions as to what services are provided, how they are provided, quality setting, and monitoring and the maintenance of standards. A service can only be responsive to users if users are involved. Public involvement offers service providers and commissioners the opportunity to better understand the needs of the public.

22. Public involvement has never been more important than it is now, at a time of reconfiguration and when crucial decisions are being made by commissioners which impact on local services. If providers are to purchase services on behalf of taxpayers it makes sense that commissioners talk to them about the services they buy and forge relationships with them so as to increase their knowledge about the quality of the services for which they pay.

23. Reconfiguration will involve difficult decisions that it is important to get right. In the context of limited resources, the service needs to consult with the public to identify what they need rather than what they want.

Public and patient involvement in healthcare services

24. The concept of PPI in health is not new. It has been considered a worthwhile aim by successive governments, and professional organisations and regulators make use of patient input and recognise its importance.

25. The term public and patient involvement encapsulates the two streams of lay involvement in healthcare services. Patient involvement is the contribution of individuals to their own healthcare, and public involvement the participation of individuals or groups in the development, planning and provision of services. [98]

Achieving effective public and patient involvement

26. Involving the public and patients is not straightforward. People as individuals and as members of groups can have diametrically opposed views. Commonly excluded groups such as those with language difficulties, learning difficulties, physical disabilities, mental health problems and those without the time available to commit through traditional means of involvement need to be reached. Once involved, it is important that people do not become distrustful of the process. This can happen if their participation is not acknowledged, or when their contribution does not appear to make a difference or at least to be considered. Involvement must not be tokenistic or not properly thought through.

27. A Which? Report identified that the main priorities for patients are that healthcare services are responsive to their needs and that they are delivered as close to them and as quickly as possible. The quality of healthcare, however, must not be compromised through working towards these aims and therefore the health and access needs of local populations must be identified. Such needs are affected by a combination of factors including the:

— geographical location—rural, suburban or urban;

— population demographics—age, sex, ethnicity, social-economic make-up;

— prevalence of long-term conditions;

— lifestyle behaviours—smoking and exercise rates, practicing safe-sex, diet and nutritional preference; and

CASE STUDY 1

Thames Reach Bondway project to gain the views of homeless people in relation to their health and the services provided for them

Thames Reach Bondway undertook a project in Lambeth to gain the opinions and views from homeless people in relation to healthcare.

The process involved recruiting a cross-section of people with a background in homelessness, representing a variety of homelessness experiences, health needs, gender, ethnicity and sexuality, and inducting and supporting them to facilitate focus groups and interviews with homeless people in hostels and day centres.

The facilitators interviewed groups of homeless people on GP services, hospital services and specialist services. They were asked to think about the services they had used, whether they were good or not and the reasons for that assessment. The outcomes of the interviews were compiled.

Several services were found to be good: GP services and hospital care where there had been long-standing relationships, hostels and day centres, and the Stockwell Drug Project. Several services were seen as not very good: services used by refugee/asylum seekers where there were communication difficulties, and A&E.

The impact of the project led the Guy's and St Thomas's Charitable Foundation to address access to A&E, the out-of-hours service and hospital care, and importantly to the opportunity for homeless people to develop skills and be able to present their views for consideration and discussion.

28. Public engagement must be more than a "tick-box" exercise. PPI structures should exist at all levels throughout the healthcare system, be properly resourced and should be used to feed both up and down into decisions relating to the design and development and the commissioning of services. Decision-makers should also be required to demonstrate how they have incorporated and responded to the views of those with whom they consulted.

29. Guidance on engaging in PPI does not need to be prescriptive about methodology, but should consider a number of principles to underpin such processes, including that:

— it should be a collaborative process with all voices in discussion helping to develop partnerships between patients, the public, health professionals and policy makers;

— the process should be ongoing and not just a periodical or one-off exercise;

— feedback mechanisms must be built into all PPI activities;

— the processes must be transparent;

— PPI activities must be accessible to all relevant groups; and

— efforts must be made to specifically target hard-to-reach and marginalised groups in order to accommodate equality and equity within the PPI structures and the relevant health services.

30. Consideration also needs to be given as to where PPI is necessary. There are several layers of hierarchy in the health system which need to be held accountable, from the Secretary of State for Health through SHAs and hospital Trusts in secondary care, and PCTs and GP practices in primary care. The real power in these organisations follows the money; namely practice and trust based commissioning.

31. For the public to be truly engaged in the provision and delivery of services, it must be given the facts about costs, about how decisions are made in allocating resources, and about how money can be spent best to meet the needs of local people best. PPI may not be high on the list of priorities for managers in the face of balancing the books, but its role, together with that of listening to the professionals charged with actually delivering healthcare, should not be underestimated.

32. Without proper involvement, people can unbalance arrangements through either action or inaction. Examples of action are where hard decisions need to be made, such as when the public react strongly to the closure of a service. Inaction where, for example, an initiative has not worked because managers with good intentions thought they were providing a service that people wanted, but they did not.

CASE STUDY 2

Barnet PCT's use of public involvement in steering commissioning decisions

Barnet PCT held an event in November 2006 to seek the views and opinions from members of the Barnet Council's Citizens Panel and other stakeholders to help steer their commissioning decisions for 2007-08.

The PCT had allocated £60 million of uncommitted money for commissioning services and had shortlisted 24 interventions which participants could choose from on which to spend a portion of the pot. Examples of the interventions are:

— a better epilepsy service;

— cataract removal operations;

— increasing the smoking cessation service;

— one cycle of IVF; and

— greater access to digital hearing aids.There were 56 participants arranged into roughly even groups at seven tables. Each table was allocated a facilitator and a note taker.

Some information about the interventions had been given out before the event, and on the evening itself the PCT Chief Executive, Medical Director and Director for Commissioning gave presentations on the background to the budget, the health of the local population and how services are commissioned.

Each participant was given eight tokens to allocate to interventions as they saw fit. There were provisos to ensure that there would be some "winners" and some "losers" amongst the interventions. There were two rounds of preference selection. During the rounds the facilitators asked participants to debate the interventions and give reasons for their decisions on how tokens were allocated.

At the end of the two rounds a simple mathematical model was used to transfer the "value" of the tokens to an overall preference score for each intervention. The highest scoring intervention was for funding extensions to GP surgery opening hours. Second and third on the list were maintaining current spending on hip replacements and reducing waiting times for hospital treatment. The exercise demonstrated that people, when given the opportunity, are capable of making rational and reasoned decisions.

The data will be taken into account by Barnet PCT when making commissioning decisions. The PCT has promised to feedback to those who took part and explain how the decisions made at the event influenced spending.

Capacity and representation

33. Capacity and representation will be a major concern for new initiatives in order to populate local networks enabling them to work for, serve and reflect their constituency effectively. Representation should reflect the population it serves to work towards ensuring that all views and voices are heard. Capacity is also necessary to ensure that the job of the representative group is done; that amongst the representative group there are people able to understand, communicate and, importantly, with the time to carry-out the complexities of the task in-hand.

34. Those responsible for consulting should seek to find what form of PPI is most effective for the purpose, significance and size of the task they are undertaking, but still with the principles set-out above in mind. It is likely that a combination of methods will be needed.

35. Three different, but overlapping, patient voices have been identified, and each has their usefulness and limitations. [100]These are:

— patients—they are experts in their own experiences and they can observe and reflect on those experiences, but may not know, for example, about the treatments or choice of drugs available to them;

— patient groups—they are expert in the views and experiences of patients like themselves; know what professional standards for treatment, for example, should be and can articulate them; know what common concerns their patients have; but can only cover a narrow band of expertise, in a specific disease area; and

— patient representatives/advocates—they have a general knowledge and hold the interests of all patients at heart; they can represent those interests; they study surveys and literature; they talk with patients and patient groups; but they may not know in detail about particular issues of any particular patient group.

36. A major problem in convincing organisations that PPI is worthwhile is: which voice should be listened to? The answer is that all voices should be given an opportunity to be heard. There are views that the naive voice is the true voice, and that the voice of patient groups and advocates are that of the "usual suspects" or "self-appointed trouble makers".

37. PPI should consider all individuals and groups as having good intentions and recognise the point of reference from where the voice comes. Where groups of patients are used to represent the "patient voice" it must be recognised that they cannot speak for the views of all patients, but that instead they speak for the values and interests of patients. These views though can be triangulated with individual views through avenues such as a public meeting. A powerful tool is involving randomly-selected people. As well as improving the representation of views, it can help broaden the base for future consultation and encourage those who would not typically take an interest in local health to get involved.

38. Representation is required to ensure that all voices are heard and capacity is necessary to ensure that those voices are considered. Understanding and knowing how to work within the system is an important goal itself, for example, knowing who to contact and who to influence, as influences seem effective when relationships are developed with key people. Most groups who are successful in influencing change know who to talk to and understand the complexities and machinations of change. [101]

Q. Do official consultations typically manage to capture the views of the right people? What kind of consultation are most effective in engaging with the appropriate people?

39. There are many different examples of mechanisms which can and are being used to engage the public and patients in health reforms and decision making. Different methods will be appropriate in different settings and at different levels, whether that be for GP practices, Trust hospitals, medical schools or the Department of Health for example. Examples of PPI techniques include:

— public/community meetings;

— patient questionnaires or surveys;

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— election/selection to trust boards;

— PPI forums;

— patient liaison groups;

— consultation with disease specific/patient interest organisations;

— patient networks (often disease specific);

— practice level patient participation groups;

— patient champions; and

— electronically through, for example, www.patientopinion.org.uk or HealthSpace.

40. PPI happens now with varying effectiveness through:

— PPI Forums;

— general practice patient groups;

— consultations by PCTs, SHAs and Trusts; and

— government consultations.

Enlightened service providers, or elements within them, will use other forms of engaging with the public and patients in designing and shaping services.

Government consultations

41. The government uses national consultations to gather the views on policy and proposed legislation. Consultations are published on the relevant department website and sent to selected stakeholders. The general public can also respond individually, as can other interested organisations.

42. The Cabinet Office has a code of practice for government consultations, setting-out criteria which should be met. [103]These are:

— consult widely throughout the process, allowing a minimum of 12 weeks for written consultation at least once during the development of the policy;

— be clear about what the proposals are, who may be affected, what questions are being asked and the timescale for responses;

— ensure that the consultation is clear, concise and widely accessible;

— give feedback regarding the responses received and how the consultation process influenced the policy;

— monitor the department's effectiveness at consultation, including through the use of a designated consultation co-ordinator; and

— ensure the consultation follows better regulation best practice, including carrying out a Regulatory Impact Assessment if appropriate.

43. There are a number of reasons why consultations are not being as effective in gaining stakeholder opinion as they could be, including:

— the sheer number;

— diverse initiatives—apparent lack of joined up thinking;

— length of documents;

— length of consultation time;

— scepticism that responses will be properly considered; and

— lack of public awareness of consultations.

44. The timeframes given to consultation are often unworkable, and even professional organisations like the BMA with the capacity and resources to respond have to work hard to do so. For individuals or for unsupported groups the deadlines give little scope for deep consideration and understanding, denying access to large swathes of the population. Time is one of the biggest barriers to gaining views from ordinary people or professionals.

45. Any attempt to use consultation as a tool for gaining public views should provide open and transparent information and not be used as "me trying to convince you that what I believe is true and should be done".

Q. How valuable are advisory panels in the design and delivery of public services?

Local Involvement Networks

46. A stronger local voice: a framework for creating a stronger local voice in the development of health and social care services was published in July 2006 with the aim of providing a framework for individuals and communities to have a stronger voice in their local health and social services by ensuring that the "needs, preferences and involvement of local people, including those that are seldom heard, are central to the planning, development and delivery of health and social care services".[104] The paper sets-out plans for Local Involvement Networks (LINks) to replace the current PPI Forums. By doing this there will be fewer LINks, one per local authority, than there are currently PPI Forums. These LINks will be used to inform local authority Overview and Scrutiny Committees (OSCs) on public views on health and social care services. This relationship has been confirmed in the Local Government and Public Involvement Bill.

47. Many people want a greater say in the local health services. As the Minister suggests in A stronger local voice: "We are committed to empowering citizens to give them more confidence and more opportunities to influence public services in ways that are relevant and meaningful to them." This is a worthy aim, but extremely difficult to do in practice, as witnessed by the huge number of social inclusion, social capital building, and regeneration initiatives that have been started by this and previous governments. Mechanisms for actual empowerment are not given in the white paper, and while formal arrangements are made clearer in the Bill, there is no detail with regard to how empowerment should happen and how its effectiveness should be monitored and regulated.

48. The legislation charges local authorities to enter contractual arrangements to run their LINks, but the governance of LINks will be left to local arrangements. In addition, the membership of LINks will also be set at local level with no national guidelines for type or number of members or funding for resources or training for members. There is a danger of inequity of public involvement between local authorities.

49. There are a number of possible strengths and weaknesses of this system over the current system. Strengths:

— the fewer number of organisations may mean more capable people for recruitment to LINks (rather than those spread between the current numerous PPI Forums);

— LINks with populations that are well educated and able to dedicate time may work well;

— LINks will have the power to refer matters to Overview and Scrutiny Committees; and

— LINks will have the power to inspect providers' premises.

Weaknesses:

— LINks with populations that are less well educated or less able to dedicate time may not work well;

— there may be conflicting views within LINks because of the size of areas covered and the priorities of particular localities;

— LINks may be too closely allied to local authorities to be independent of local politics and any conflicts of interest that may arise; and

— there is a danger of LINks being patronised, out-thought and manipulated by managers the lack of national coordination for LINks does not formally enable sharing of information, ideas and good practice.

50. Representation, capacity and resources are key elements in enabling LINks to work. None of these have been addressed in any detail in the consultation process or the Bill. The task of collecting real public opinion can be complex and time-consuming, particularly if it is to be done properly. LINks must have the capacity and resources to be able to undertake their duties. Representation would ideally reflect the population, but more important will be the ability of LINks to reach all the constituent parts of its population served, including those traditionally excluded.

51. The BMA understands that between £100,000 and £150,000 per annum will be allocated through local authorities for each of the LINks. This is not much if translated into salaries for a minimum number of staff, expenses for members, office accommodation and running expenses, let alone money for undertaking surveys of public opinion. It is also unclear whether money for LINks will be ring-fenced.

Overview and scrutiny committees

52. While LINks have the power to refer matters for consideration to OSCs, OSCs must use LINks to inform their work in reviewing local health and social care services. OSCs are the only way that NHS organisations can be held accountable locally. However, there are potentially a number of failings in the OSC system which could undermine its effectiveness, namely:

— seats are filled only by local councillors;

— seats do not have to reflect the political make-up of the council (ie the majority party may choose to fill all seats);

— councillors may have no interest in health;

— for health, councils have no financial hold over service providers; and

— being charged with overseeing both health and social care may result in conflicts of interest and culture between health and social care concerns.

53. OSCs have no mandatory powers to change anything. If their recommendations are not acted upon they can refer the matter to the Secretary of State who can make a decision or refer further to the Independent Reconfiguration panel. In addition, due to other responsiblities and the timing of meetings, OSCs can only be reactive to fast moving situations in health rather than be proactive.

54. The government released its reply to the A stronger local voice consultation in December 2006. In opening the reply the Secretary of State for Health says "I believe that seeking people's views on the services they use is essential to improving both those services and the experiences of the people who use them". The key here is the aim only to "seek" public views rather than actively engage the public in participating and influencing decisions on the content of services or of the commissioning of services.

55. Overall, the arrangements between LINks, OSCs and health and social care providers appear extremely bureaucratic. If LINks are to have any real influence they will need much more funding than PPI Forums received.

Q. How does user influence relate to wider issues of democratic accountability?

Legal responsibilities to the public and patients

56. In the 1990s the NHS patients' charter focused on operational items such as waiting times rather than the principles of the service. It was found that few patients were aware of the details of the charter, that it was rarely utilised and that it did not balance raised expectations with patient engagement. [105]

57. With patient rights should also come patient responsibility. The patients' charter was a rights-only charter, with no mention of responsibilities. The majority of patients accept and acknowledge their responsibilities, including making appropriate use of services, behaving in a civil way and co-operating in their own healthcare. There are current examples of where patients' charters are used, including Hong Kong, [106]Spain[107] and King's College Health Centre[108] in London. Each of these examples emphasises both the rights and the responsibilities of patients, reflecting the partnerships that are necessary within healthcare. The concept of a patients' charter based on these rights and responsibilities would be supported.

58. Section 11 of the Health and Social Care Act of 2001 (now Section 242 of the NHS Act 2006), made public consultation a legal requirement at the level of Primary Care Trusts (PCTs), Strategic Health Authorities (SHAs) and NHS Trusts with regard to:

— the planning and provision of local services;

— the development and consideration of proposals for changes to the way services are provided; and

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59. The government has been pushing forward with current reforms under the justification of ensuring a patient-led NHS. Even with Section 11, there is no coherent guidance as to how effective participation can and should be achieved and some organisations have struggled to comply with this requirement. The necessary honesty and balance about the evidence or motives behind reform plans has often been absent.

60. In December 2006 the Local Government and Public Involvement Bill was introduced into the Commons. This aims to formalise, in legislation, the link between service providers, including local authorities, and local involvement networks at the level of local authorities. The bodies involved, local involvement networks and Overview and Scrutiny Committees, are discussed below.

Public and patient involvement in healthcare

61. There is often a disconnection between what people are told needs to be done, for example closing an A&E department, and what the public actually believes should be done. Effective PPI is a benefit to people and organisations because it allows them the opportunity to engage in decisions about healthcare services, and because it can:

— educate the public and patient body;

— allow the public to see what good has been done and recognise what improvements have been made; and

— allow the public to understand what constraints there are.

62. Healthcare policy decisions, at whatever level they are made, ultimately affect patients' lives. Therefore it can be argued that patients have a moral and ethical right to play a meaningful role in developing healthcare policies. Engaging patients in health policy decision-making helps to ensure that policies reflect patient needs and preferences, and this must ultimately make for more effective healthcare. In a publicly funded health service, this serves to increase accountability.

63. PPI is not about people wanting to make the clinical decisions. It is, in part, about facilitating patient autonomy and, together with clinical autonomy, holding managers to account. Getting the public involved will not happen through good intentions; it requires commitment, resources and building capacity for involvement to happen and be effective.

64. Healthcare professionals and patients should foster partnerships, leading to more effective care. Patients want to be involved in decisions about their healthcare and treated as partners by health professionals. They would often like to be offered a choice of treatment and be informed to enable them to make a choice. A collaborative approach to decisions improves outcomes as patients are more likely to comply with medication and treatment if they are involved.

65. In a market environment which has been created for providers to compete with one another for patients, PPI is not just necessary for NHS providers but also for private and third sector organisations commissioned to provide services financed by the public purse. This is particularly important in the context of care closer to home where policy decisions which cross the boundaries between healthcare and social care services have to consider quality, safety and equity.

Foundation Trusts

66. NHS Foundation Trusts are part of the NHS reform programme built on the premise that because they are autonomous organisations free from central government control they can decide how to improve their healthcare services around local needs and priorities through establishing strong connections with their local communities. Local people can become members and governors. Those living in communities served by a hospital of an NHS Foundation Trust are invited to become a member, and members can stand for and vote in elections for governors of the Trust. This form of public ownership and accountability aims to ensure that hospital services more accurately reflect the needs and expectations of local people. [110]

67. Foundation Trusts appear to be a failing area in terms of PPI, and there is a lack of evidence to show that they may be working. There is no consistency on how appointments are advertised or made. Lay governors are unsupported, usually receiving no training or administrative support, and their role in decision making is also negligible with decisions often being made by an executive group, with no lay membership, which are then in effect rubber-stamped by the board.

Other recent PPI initiatives

68. Two recent initiatives, both supported and facilitated by the government, are aimed at professionalising PPI. These are the NHS Centre for Involvement and National Voices.

69. The NHS Centre for Involvement was launched on 28 November 2006 and focuses on services directed at health professionals to give them the tools to turn PPI into everyday practice. Amongst its core values and strategic objectives are the following:

— engage with local communities;

— develop responsive and democratically accountable services;

— promote the value of PPI;

— build capacity of organisations, staff and patient-citizens for high quality PPI; and

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70. National Voices started as an independent group of health and social care related voluntary organisations looking at the decline in the public's input into shaping national policy. It has now been asked by Ministers to explore how this can be done better. Its core aims are to:

— agree the principles that underpin the development of independent national voices of service users, patient and carers to influence strategy and policy across health and social care at the highest level; amd

112

71. The values of the NHS Centre for Involvement and the aims of National Voices are all laudable, but professionalising of PPI may lead governments and providers to regard only the views of a national organisation or their locally trained patient advocates because they "represent the patient view". This would be detrimental to PPI. People who do not belong to a patient organisation would not have a voice. Patient groups and charities who have worked hard to get their voice heard may lose that opportunity, and the "one" representative voice with, by its very nature, input from a myriad of views, will have difficulty putting together a coherent argument and will be easier for governments and providers to dismiss.

72. The White Paper Our health, our care, our say aimed to change the way community services are provided and give patients and service users more control over the treatment they receive. [113]It identified a number of triggers, one of which is public petitions, to which PCTs would be expected to respond. Public petitions are envisaged as culminating in an arbitration procedure in making decisions about the provision of services.

73. As with other proposed initiatives there is no detail as to how petitions and the following process might work, with fundamentals needing clarification such as:

— who can petition;

— how many signatures would be required to trigger the process;

— what is the process for response;

— how the quasi-judicial process of arbitration would be set up or enforced; and

— how petitioners would be represented in the process.

74. There are also concerns with regard to whether or not the process is democratic. Getting a petition organised may lead to health inequalities as those very people who might most need one will be least qualified to organise it. A petition could be initiated by a local MP making it vulnerable to political manipulation.

75. If PPI is conducted and resourced properly, there should be no need for public petitions. Patients and the public should have proper accessible and democratic channels to go through without the need of getting up a petition.

January 2007

www.which/co/uk/files/application/pdf/0508healthchoice_rep-445-55752.pdf

90 Ipsos MORI (2006) Government Delivery Index, November 2006. www.ipsos-mori.com/polls/2006/mdi061118.shtml Back

91 Developing Patient Partnerships & NHS Alliance & National Association for Patient Participation (2006) Effective practice-based commissioniong: engaging with local people. London: DPP. Back

92 Propper, C and Burgess, C (2004) Does competition between hospitals improve the quality of care? Hospital death rates and the NHS internal market. J Public Economics, 88 (7-8); 1247¸72. Back

93 Farrington-Douglas, J and Allen, J (2005) Equitable Choices for Health, ippr, Central Books, London. Back

94 NCCSDO Briefing paper, Can choice for all improve health for all? The evidence on whether NHS patients can and should become consumers of healthcare, (2006), DH and SDO, London. Back

95 Citizens Advice Bureau (2005) The pain of complaining. CAB ICAS evidence of the NHS complaints procedure. Back

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97 www.parliament.the-stationery-office.co.uk/pa/pabills/200607/local_government_and_public_involvement_in_health.htm Back

98 Coulter, A (2006) Patient-focused interventions: a review of the evidence. Chapter 7 IMproving service development. Picker Institute. www.pickereurope.org/Filestore/Downloads/QEI-Review-chapter-7.pdf Back

99 Which? (2005) Which Choice? Health policy report. Back