House of Commons - Health

Select Committee on Health Third Report

3 Recent history of Patient and Public Involvement

35. Structures designed to involve patients and the public in the provision of healthcare services have been in place in some form for many years. Community Health Councils (CHCs), which were established in 1974, remained the mainstay of PPI for over 25 years. Then, around 2000 a series of changes were made. In 2001 the legislation was passed to abolish CHCs. The roles they had undertaken were divided between a number of other organisations. The inspection function and representative role was taken over by PPI forums, which were established in 2003. They were supported by a national organisation, the Commission for Patient and Public Involvement in Health (CPPIH). The complaints function was taken on by the Patients Advice and Liaison Service (PALS) and the Independent Complaints and Advocacy Service (ICAS). Local Authority Health Overview and Scrutiny Committees (OSCs) provided added scrutiny of NHS organisations. Now the Government proposes that the patient and public involvement role be transferred from forums to LINks.

Brief History of PPI

1974 CHCs established

2000 OSCs established following Local Government Act 2000

2001/2002 Health and Social Care Act 2001 abolishes CHCs and establishes successor organisations; extends OSCs' remit to healthcare

2003 CPPIH established to oversee a new system of PPI. CHCs cease and PPIfs begin operating at the end of the year

April 2004 First foundation trusts established with Boards of Governors

July 2004 Department of Health announces CPPIH will be abolished in summer 2006 and "stronger, more efficient arrangements will be put in place to provide administrative support and advice to Patients' Forums". The Parliamentary Under-Secretary of State for Health (Miss Melanie Johnson) tells the House of Commons that PPIfs "are the cornerstone of patient and public involvement. They will not be abolished"[15]

July 2005 The Department announce CPPIH abolition to be postponed until summer 2007

February 2006 The Department to conclude PPI review by setting up a PPI panel

July 2006 The Department announces the replacement of PPI Forums with LINks

COMMUNITY HEALTH COUNCILS

36. The establishment of CHCs represented the first substantial attempt by Government to give the user, or potential user, of healthcare services a voice in their design and operation. CHCs had:

a duty to represent the interests of the public, to monitor local health services and to advise, and be consulted by, Local Health Authorities on health-related matters;

a duty to handle patient complaints and advocacy issues within NHS trusts;

the power to veto proposals involving service re-design, such as ward closures, and to refer matters directly to the Secretary of State;

rights of inspection to monitor services.[16]

The Association for Community Health Councils for England and Wales (ACHCEW) was set up to provide a national voice for CHCs and training for members.

37. CHCs had a larger overall budget than will be available to LINks. Each CHC had a budget roughly equivalent to that planned for each LINk, approximately £150,000, but LINks are expected to cover a larger area. For example, in an area such as Hertfordshire, there would be one LINk, with a budget of £150,000, compared to four CHCs, with a combined budget of around £600,000.[17] Even taking into account the fact that CHCs undertook functions now done by PALs and ICAS, this seems a substantial reduction.

38. CHCs were criticised. Their responsibilities for primary care were limited.[18] Some thought they lacked independence.[19] The Kings Fund has argued that too few council members were younger adults and individuals from non-white British backgrounds.[20]

39. CHCs were abolished in 2003. Many witnesses to this inquiry held them in high regard although others thought their performance variable.[21] Nevertheless, most criticised their abolition. The National Pensioners Convention described them as "much missed" and the Royal College of Nursing complained about the "gradual watering-down of the powers of public and patient involvement networks" since their disappearance.[22] Professor Angela Coulter of the Picker Institute stated:

In my view the abolition of the CHCs was a major mistake because although they could have been improved, and indeed they themselves had a review just before they were abolished to say, "We want to improve and make ourselves more effective", they were abolished and we have then been reinventing and reinventing things and we have taken several steps backwards.[23]

40. Witnesses also argued that the abolition of CHCs reduced public involvement. Partly this was a result of destroying a long-standing institution. As David Wood from the charity Attend stated:

I think there is a loss of understanding, if that makes sense. People may have understood what they thought the CHCs did. (Whether they did it or not is another issue.)[24]

Mrs Jennifer Beesley, ex-chair of Great Yarmouth PPIf, commented, "[people] all still know the CHC but they have not heard about the PPIF".[25]

41. CHCs were replaced by a number of organisation, including PPIfs, PALS and ICAS. In addition, about the same time, OSCs' remit was extended to include health matters.

PATIENT AND PUBLIC INVOLVEMENT FORUMS

42. The Health and Social Care Act 2001 gave the NHS a duty to involve the public. PPI forums were set up in response to this duty and to replace the representative elements of CHCs' work. PPIfs became operational at the end of 2003. One PPIf was aligned to each NHS trust (including foundation trusts) and PCT in England. There were 572 in operation before PCTs were reconfigured; there are now approximately 400 PPIfs.

43. PPIf are coordinated by an arms-length body, the Commission for Patient and Public Involvement in Health (CPPIH). The Commission may speak on behalf of forums and provides training for forum members. CPPIH also runs national campaigns, such as "Fair Talk", which raised concerns about the costs of calls from bedside entertainment units.

44. PPIfs have a number of statutory powers. These include:

The right of access to some healthcare premises;

The right to request written information from trusts and PCTs, which have a duty to respond to such requests within 20 days;

The right to refer matters to the local OSC (see below).

In contrast to CHCs, the remit of PPIf included primary care.

45. PPIfs do a range of work that aims to gauge patient and public experience of health care, which is then fed back to the relevant trust in an attempt to improve services. Examples of work regularly undertaken by PPIfs include:

a) Patient surveys. For instance, the North East Ambulance Trust PPIf used surveys to examine patients' experiences and the efficiency of the Patient Transport Service. These surveys were followed by a report that made several recommendations on how standards could be raised. The trust subsequently acted upon these recommendations.[26]

b) Compilation of service review reports. For example, United Bristol Hospitals PPIf examined the treatment of stroke patients and reported to hospital management. Managers subsequently took on board the recommendations and have started to implement improvements in the service.[27]

c) Presence on PCT and hospital trust boards/committees. Members of PPIfs commonly act as public/patient representatives in these arenas. For example, a member of the Southwark PPIf sits alongside GPs on a committee on practice-based commissioning and on the PCT's Governance Committee.[28]

Department of Health officials pointed out that there was no legislation in place requiring that PPIfs should have a presence on such committees, however. Meredith Vivian stated that:

…that situation has absolutely nothing to do with the legislation or functions of the patient forums. There is nothing in the patient forum legislation that provides for that….That is nothing to do with forums; that is the NHS doing what it is supposed to do.[29]

d) Visiting premises. Members of PPIfs have a right of access to hospitals and other NHS premises and use such visits to inform their reports. Witnesses stressed the value of this right as it enables them to talk to both staff and patients, gauge their views and feed back information to the organisation in question.[30]

46. The most common areas investigated by PPIfs are infection control, GP services, transport and parking, mental health, community involvement, out of hours services, health information, older peoples services and disability services.[31]

47. PPIfs have no duty to monitor or investigate social care services, and cannot examine issues unrelated to the trust or PCT to which they are affiliated. This may limit their work, as Penny Robinson, Chair of the United Bristol PPIf, described in the following example:

We were doing a survey into delayed discharge and we discovered that 60% of the delay discharges were due to problems with social services not being able to find places for elderly people, but we simply hit a brick wall with social services… basically we have no jurisdiction with social services and we had to abandon the project.[32]

48. The shift from the CHC system to PPIfs was not smooth; it was described as a "complete hiatus" by David Stout from the NHS Confederation.[33] Many others mentioned the need for PPIfs to "start again" following the demise of CHCs,[34] suggesting that much expertise and experience was lost in the move.

49. Problems associated with PPIfs included difficulties in the recruitment of members, the costs of supporting them through CPPIH (see next section), and the quality and extent of support provided by Forum Support Organisations (FSOs). PPIfs were fully operational for about six months before the abolition of CPPIH was announced in July 2004. The abolition of PPIfs was announced in July 2006 in the consultation document A Stronger Local Voice. There has been some uncertainty about when PPIfs will actually disappear, but it is expected that they will cease operations by the end of 2007. Many forum support organisations have been working on 6-month renewable contracts since the abolition of CPPIH was confirmed.[35] We look at assessments of PPIfs' work below.

OVERVIEW AND SCRUTINY COMMITTEES

50. Section 21 of the Local Government Act 2000 required councils to establish Overview and Scrutiny Committees (OSCs). Following the abolition of the CHCs, the Health and Social Care Act 2001 gave OSCs a role in reviewing health and social care services. These committees, which consist of elected councillors, question and evaluate the impact of executive decisions and actions as well as investigate policy issues, advise the executive and consider budgetary and other documents. Detailed implementation of scrutiny arrangements is a matter for individual local authorities.

51. OSCs have a range of powers, including the right to request information and the right to summon people before them to explain their actions. They may examine the efficacy of efforts to involve patients and the public, may request action to be taken and will then scrutinise the subsequent report. OSCs have the power to recommend an independent inspection of premises. They must be consulted by the NHS where there are to be major changes to health services and may require a public consultation when services change. Matters referred to OSCs by PPIfs may be investigated by the Committee and, where necessary, referred upwards to the Secretary of State. This may occur in the event of major reconfigurations of services but also in the case of small but intractable problems.

52. Doubts have been expressed about the effectiveness of OSCs. The 2002 report by the then Transport, Local Government and the Regions Select Committee drew attention to the weaknesses of scrutiny arrangements.[36] Five years later, although some PPIfs appear to have good relationships with their local OSCs, other witnesses were critical of OSCs during this inquiry. The BMA stressed the limitations of their powers:

Councils have no financial hold over health service providers… OSCs have no mandatory powers to change anything.[37]

HealthLink pointed out:

When a local election is in the offing, OSCs can carry out no scrutiny at all because of 'purdah' conventions, unlike CHCs which operated irrespective of elections. There is therefore a perverse incentive for the NHS to push through unpopular changes at this time, free from challenge or referral to the Secretary of State.[38]

53. OSCs' lack of independence was highlighted by other submissions. Medway Community Health PPIf stated:

Experience of Overview and Scrutiny Committees has demonstrated them as ineffective in providing local scrutiny of the NHS and are recognised as such within the Cabinet system operating within local government.[39]

The charity Breakthrough Breast Cancer added:

Some Breakthrough members have raised concerns that Overview and Scrutiny Committees do not currently operate as an effective check and balance on NHS Trusts because the Committees are perceived as not being independent from NHS Trusts.[40]

54. We were told of a number of other criticisms. OSCs can only be reactive rather than proactive.[41] There is no lay or public representation; local councillors fill all seats and OSCs may not reflect the political make-up of the council (ie. the majority party may choose to fill all seats).[42] As a result, OSCs may not exercise rigorous scrutiny.

PATIENT ADVICE AND LIAISON SERVICE (PALS) AND INDEPENDENT COMPLAINTS ADVOCACY SERVICE (ICAS)

55. The PALS and ICAS systems were set up when CHCs were abolished to absorb the advice and redress functions that were previously the responsibility of the Councils. The establishment of a PALS body in every NHS trust formed a key element of Chapter 10 of the NHS Plan, Changes for patients, which described a range of initiatives designed to improve patient information, patient choice and PPI in the NHS.[43] PALS was originally called the Patient Advocacy and Liaison Service. The advocacy element was later removed from PALS (and the 'A' changed to 'advice'), and ICAS was introduced to handle this function. PALS now aims to resolve problems reported by patients in an informal manner while the local formal complaints procedure is covered by ICAS. PALS and ICAS also pass information to PPIfs relating to complaints and other issues affecting patients which can be used to inform their work.

56. The work of PALS was criticised by several submissions to the Committee. PALS' lack of independence was criticised by Judy Birch, from Bournemouth and Poole PCT PPIf:

PALS is not independent and patients frequently report difficulties with the non-independent nature of the latter.[44]

Barry Silverman, from Southwark PPIf, stated:

Complaints disappear into PALS, GP systems and hospital system.[45]

Mary Adams, Head of Public Involvement at North Somerset PCT, agreed that there were problems with communicating messages from patients unhappy with their treatment who report to PALS staff:

PALS services [are] not linked in well enough to other structures and feedback is under utilised in supporting NHS service improvement… People also need to know that their comments and concerns will be fed into improving services through mechanisms like PALS and complaints services.[46]

She added that, whereas once the service was seen as a crucial element of patient representation, PALS has become increasingly marginalised and some services have been threatened with closure due to trusts' financial constraints.[47]

57. Several witnesses also expressed concern about ICAS. Some, such as the Countess of Chester Hospital PPIf, mentioned the poor standard of the current formal complaints arrangements, particularly regarding access to data on complaints. The PPIf stated that, "This has never been provided to PPI Forums in any meaningful format".[48] Other submissions also commented on the poor feedback of information to PPIfs. The group Action Against Medical Accidents stated:

ICAS is also being provided in an inconsistent way across the country by three quite different providers who are not formally linked in any way to patients forums. There has been no independent evaluation of the current arrangements for ICAS.[49]

The London Ambulance Service PPIf added:

Access to ICAS services in the community is extremely poor. They have no public profile and little capacity.[50]

58. Problems with ICAS were also highlighted by Citizens Advice, which was a contracted provider of the service in six of nine regional areas in England. In 2005 it published a report The pain of complaining which looked at the NHS complaints procedure overall.[51] It found that patients faced:

difficulties in accessing the complaints system, due to perceived reluctance by trusts to advertise the procedure and support services available;
lengthy delays, as both trusts and the Healthcare Commission failed to deal with complaints within their targets;
a culture which is defensive rather than responsive, failing to provide complainants with explanations of what went wrong, or apologies when mistakes were made.

FOUNDATION TRUST BOARDS OF GOVERNORS

59. Foundation trusts, which began to be established in 2004, have a duty to engage with their local community and encourage local people to become members of the organisation. There is also a statutory requirement for foundation trusts to establish a Board of Governors, sometimes called a Members Council.

60. The size and make-up of the Board of Governors depend on local circumstances and vary between organisations. Governors are nominated and elected by their local community. Legislation requires that the majority of places must be taken by representatives elected from the public and patient membership of the trust, there must be at least three staff governors elected from the staff membership, at least one governor from the Local Authority, one from a local PCT and, if there is a university in the area in question, a representative of that body.

61. Governors are not involved in the day to day management of the organisation; instead they ensure that the trust carries out its responsibilities as set out by Monitor. They must be consulted on future plans for the organisation. Statutory duties include:

Appointing, or removing, the Chair and non-executive directors of the Board of Directors;

Approving the appointment of the chief executive;

Appointing the auditors of the trust; and

Considering the trust's annual forward plan.

62. Activities designed to engage with members of the trust and other members of the public may include open days, seminar programmes, surveys and emails. Monitor gave the following example of effective public engagement by a Board of Governors:

Cambridge University Hospitals NHS foundation trust has one of the largest memberships. Governors have taken responsibility for communicating with members with monthly meetings held in local towns and villages. Meetings take place both in afternoons and evenings to make them more accessible to any member wishing to attend.[52]

63. According to Harrogate and District Foundation Trust (HDFT), the Board of Governors' office holds data on ways in which trust members have said they are willing to offer advice. Information is also held on patient special interest groups, expert patients, and complainants. This information allows governors to call on relevant patient expertise when it is needed. HDFT gave other specific examples of PPI work:

…the Board requires all internal plans to have input from service users or advisory groups…Service delivery and performance is routinely reported to the monthly Board of Directors; each quarter a report from the Quality of Patient Experience Group includes examples of how comments from service users have been incorporated in developing the service. That group includes members of the Foundation Trust working in a lay capacity as well as Governors.[53]

64. The evidence about foundation trusts' patient and public involvement arrangements is mixed. Like Harrogate and District, other trusts reported that they were doing positive patient and public involvement work. In contrast, the BMA was critical, citing the limited data on the effectiveness of patient and public involvement within these organisations, and the lack of support for lay members of the Board of Governors. The Association stated:

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. From experience, 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.[54]

65. The powers of foundation trust Boards of Governors have not been tested to any great extent to date. Little conflict has been reported, but Monitor suggested that this may be because "governors have not yet sufficiently found their feet".[55] There is a proposal to establish a governors' forum, to be run by the Kings Fund, which will provide a means for governors to share information and learning and may address this issue.

66. The number of hospitals achieving foundation status will increase steadily over the next two years. There are currently approximately 60 foundation trusts, but all trusts are expected to be in a position to apply for foundation status by 2008. There will therefore be an increase in public participation through the organisations' associated Boards of Governors and the potential for overlap with other groups will grow.

67. Monitor warned that the work of foundation trust Boards of Governors and other bodies concerned with PPI might lead to the duplication of effort:

Where patient and public involvement initiatives overlap there is potential for confusion as to the different responsibilities of each organisation.[56]

HEALTHCARE COMMISSION

68. The Healthcare Commission, which is the main inspector of healthcare bodies, was established in April 2004 under the Health and Social Care (Community Health and Standards) Act 2003. Since its beginning, it has undertaken PPI-related work, including:

a patient survey programme, which feeds into trusts' ratings (based on inspections carried out annually by the Commission);

involving patient groups in the work programme through service-user consultation when examining a specific issue such as learning disabilities or services for older people.

69. The Healthcare Commission appears to place a high value on patient and public involvement, and recently held a consultation on its strategy for engaging with patients and the public. The Commission stated that effective patient and public involvement allows healthcare providers to "gain a fuller understanding" of the patient experience, and what patients need and expect from healthcare. According to the Commission, patient and public involvement allows access to expertise that clinicians and managers may not have, and gives patients more control over their care.[57]

70. The document Standards for Better Health, published by the Department, is used by the Commission to as part of its annual health check of NHS organisations.[58] Patient and public involvement is included as a Core Standard:[59]

C17 The views of patients, their carers and others are sought and taken into account in designing, planning, delivering and improving health care services.

The following Developmental Standard is also included:

D11 Health care organisations plan and deliver health care which:

a) reflects the views and health needs of the population served and which is based on nationally agreed evidence or best practice;

b) maximises patient choice;

c) ensures access (including equality of access) to services through a range of providers and routes of access; and

d) uses locally agreed guidance, guidelines or protocols for admission, referral and discharge that accord with the latest national expectations on access to services.

71. As part of the annual 'health check', NHS trusts make a self-assessment of whether their organisation has achieved core standards. The Healthcare Commission seeks additional comments from patient groups and representatives, PPIfs, OSCs, foundation trusts' Boards of Governors and SHAs to check the assessment made by the trust. It will follow up any concerns.

The abolition of the Commission for Patient and Public Involvement in Health and Patient and Public Involvement forums

72. The abolition of CPPIH was announced in July 2004, although the exact date on which it will cease operations has yet to be confirmed. The abolition of PPIfs was announced two years later in July 2006. Local Involvement Networks (LINks, described more fully in the next chapter) will replace PPIfs. We discuss below what form of national body, if any, might take the place of CPPIH.

THE DEPARTMENT'S REASONS FOR ABOLISHING PATIENT AND PUBLIC INVOLVEMENT FORUMS

73. The Department has given a number of reasons for the proposed changes:

a) Failings of the current system:

PPIfs are not representative of their communities;

The current system is poor value for money and too bureaucratic;

b) PPI needs to reflect the changes in the health service, including:

The increasing diversity of providers;

The greater emphasis on commissioning and primary care;

The need to include social care within PPI arrangements.

Some witnesses supported aspects of the Department's argument; others suggested that there were other reasons for the changes.

FAILINGS OF THE CURRENT SYSTEM

PPIfs are unrepresentative

74. The Department of Health believes that PPIfs fail to represent their communities.[60] First, too few people are members of forums. The average for the country is 8 per forum.[61] Moreover, those people who are members tend to be older adults, often retired. There are relatively few participants from non-white backgrounds. This means that the views of working adults, those with young families and from black and minority ethnic groups are poorly represented.

75. There is also a fundamental objection to the concept of patient representatives which is that too much power is given to the few individuals who are members of forums. The Royal College of Paediatrics and Child Health stated:

It is not possible for one small group of individuals to be able to represent all the different groups who use health services…[62]

Some witnesses agreed. Dr Ed Mayo from the National Consumer Council stated:

I think there is a sense that [PPIf members] are representative patients rather than patient representatives. In order to do that they would need a good deal more diversity.[63]

The Commission for Social Care Inspection (CSCI) told us that the new plans should not, "reproduce older models of public involvement, where people speak on behalf of those who use services".[64]

76. Moreover, the existence of a small group to consult makes it too easy for the NHS organisations to 'tick the PPI box'. It discourages them from consulting widely:

Trusts should be made aware that "consultation" requires more than having a representative on a board, however, to nod through change or add credibility to its decisions.[65]

Too bureaucratic and poor value for money

77. The Department's proposals aim to reduce bureaucracy and increase resources received at the 'front line' of PPI. CPPIH agreed that potential members were discouraged from joining PPIfs by the bureaucracy associated with the regulatory framework.[66] Meredith Vivian, Head of Responsiveness and Accountability at the Department, also told us that better use could be made of the money:

What we can do with the available funds is make them go much further by stripping out part of the current bureaucracy between the Department of Health and the front line, ie. activity by patient forums. We want much more money to get into the hands of those people who will actively engage in this kind of activity.[67]

THE CHANGING NATURE OF THE HEALTH SERVICE

Diversification of providers

78. Services are now obtained from a range of providers within the NHS and from the private and voluntary sectors. The Department suggested that these changes meant that a different type of PPI was now needed:

In the future there will be an increasing mix of providers, meaning that the old system of user involvement, that was focussed around individual NHS institutions is no longer appropriate.[68]

Increasing emphasis on primary care and commissioning

79. The Department also argued that increasing emphasis on primary care and the increase in commissioning carried out directly by PCTs means that public involvement at this level is more important now than when PPIfs were first introduced. Harry Cayton, National Director for Patients and the Public at the Department of Health, stated:

Because government policy is very strongly to devolve responsibility for commissioning down to PCTs it is absolutely essential to ensure that they have a mechanism by which they engage with their communities about the commissioning decisions they make; otherwise, they will be detached.[69]

80. Moves to strengthen PPI in commissioning were welcomed by witnesses. We were told that it was of central importance for new structures to be integral in commissioning decisions. This view was strongly endorsed by HealthLink:

The commissioning of services without public and patient involvement is commissioning with one hand tied behind the commissioners back-statistics can be used to determine what services are required but the way they should be provided will be largely guess work by commissioners without patient involvement[70]

The NHS Alliance stated:

We also think that PPI needs to be promoted in practice based commissioning (PBC); at the moment despite exhortation PPI is poorly represented in PBC. Local people should be involved in defining PBC cluster priorities, improving pathways, spending savings [and] monitoring quality.[71]

Inclusion of social care

81. The inclusion of social care in the remit of the new PPI structures is another key change from earlier arrangements. Meredith Vivian told us:

There is a great deal to be said for adjusting and revising the whole system for representing views at local level to make things more relevant and capable of being more inclusive and to widen the remit to include social care.[72]

82. Most witnesses welcomed the inclusion of social care in the remit of LINks. Dr Tritter stated:

[The new arrangement] provides a different opportunity because it links health and social care. In that sense it is about improving the transition and integration of those services potentially from the perspective of local communities.[73]

We were also told:

Within the wider Bill and subtle changes going on at local government level one sees opportunities for connecting health and social care and reconnecting public health with some of these other areas which I believe are genuinely exciting.[74]

ALTERNATIVE VIEWS

83. Some witnesses did not believe that the Department had given the real reasons for the changes and provided other explanations for the abolition of PPIfs. Chief among these was the poor performance of CPPIH. Many thought that the Department had decided to abolish CPPIH and subsequently abolished PPIfs almost as an afterthought. While the Department was concerned that PPIfs were 'unrepresentative', they would not have been abolished had it not been for the need to deal with CPPIH.

84. The evidence we received was overwhelmingly critical of the Commission. CPPIH's lack of response to problems experienced by forums was mentioned by frustrated PPIfs:

We are on our second Forum Support Organization [support officer] and when we are surveyed about their support for us we have always been highly critical. We have also made extensive efforts to go to CPPIH with our concerns without success.[75]

Others pointed out the poor communication, training opportunities and levels of support provided by CPPIH:

Communication and support from the Commission has been lamentable and the so-called training-provision derisory. The benefit from the Commission to Forums and their work has been nil. The Commission has misrepresented Forums' views and wishes and has often actively abetted initiatives to restrict and hamper them…. This is a disgrace.[76]

85. In response to questioning, the Commission's Chair, Sharon Grant, told us that CPPIH was born into "difficult circumstances". She indicated that the displacement of large numbers of people following the abolition of CHCs and the speed at which the new structures were set up contributed to the problem.[77] David Stout of the NHS Confederation concurred:

The shift from CHCs to PPI forums was done on the face of it in quite a hurry with perhaps less detailed planning for what exactly these forums were there to do, so there has been some degree of ambiguity about role and function.[78]

Should the Commission for Patient and Public Involvement in Health and Patient and Public Involvement forums be abolished?

86. There is a widespread feeling that many PPIfs had done the best job possible given the circumstances they faced. Beatrice Rogers, Chair of the Leeds Teaching Hospital PPIf, summed up the feelings of many:

Any actual failure has been within the Commission itself, its inadequate leadership and the excessive cost. Their current inefficiencies have to be seen to be believed.[79]

87. Others stressed the variability of PPIfs.[80] It is possible that such variability is part of the nature of voluntary organisations, including PPI structures. CHCs were also of variable quality and there is no obvious reason why LINks should be different.

88. Witnesses countered the Department's arguments. No one argued that PPIfs were fully representative of the communities they served. However, some witnesses suggested that a lack of representation of all races and religions on the PPIf itself did not matter as long as the work done was beneficial to the whole community. Professor Celia Davies argued that the actions of a group were more important than its composition:

Once somebody asks whether it is representative the whole argument collapses, because it never quite is. What one must do is ask whether the organisation will find ways to get to hard-to-reach groups and learn how to do that. Will it run events that bring together people from hard-to-reach groups in ways they find amenable?[81]

89. Dr Brian Fisher of the NHS Alliance suggested that obtaining representative information from local people on a specific issue was in any case a "chimera".[82] Eastern and Coastal Kent PPIf member Nora Warner stated simply:

There have been claims that we are too white, too middle class, too old....who else has the time, the income and the experience to devote chunks of their free time to wading through lengthy and verbose reports; sitting through and making sense of countless meetings; instigating inspections; calling PCTs or Trusts to account; carrying out surveys; suggesting solutions to problems?[83]

90. The presence of PPIf representatives at meetings is an easy way for patients to have a role in NHS decision-making. It also allows PPI at every stage of the process with no information being hidden or decisions made in secret. The long-term relationship allows for true engagement as both sides learn about each others' views. Many written submissions spoke of the vital role this kind of representation plays.[84]

91. Several witnesses argued that PPIfs need not be abolished but could develop to undertake effectively the work that is proposed for LINks. Penny Robinson told us:

I feel that the present system, if it was encouraged and developed and better resourced, if it just widened its remit a little, would be far more successful than dismantling everything and starting again from scratch.[85]

92. Witnesses argued that PPIfs roles could be extended. Some PPIfs, such as Southwark, are already involved in monitoring commissioning. More were keen to see greater patient and public involvement within commissioning. For instance, Richmond and Twickenham PCT forum stated:

Forum members…are committed to progressing the agenda for public and user involvement in the planning, commissioning and provision of local care services.[86]

93. Moreover, even those who accepted that LINks might be a slight improvement, argued that the Government should not ignore the costs of change. A Forum Support Organisation stated:

It feels like any lessons learnt from the abolition of Community Health Council's have been quickly forgotten.[87]

94. Finally, it was argued that the switch from PPIfs to LINks would create a hiatus in patient and public involvement arrangements which would be convenient for the Government at a time of major and often unpopular change in the NHS.[88]

Conclusions

95. For many years CHCs were the main forum for patient and public involvement in the health service. Following their abolition, PPI functions were taken over by a number of successor bodies, including PPIfs, PALs and ICAS. About the same time OSCs were established and subsequently their remit was extended to include health. Soon after the first foundation trusts were established with their Boards of Governors having a patient and public involvement role. Some aspects of patient and public involvement work are also carried out by the Healthcare Commission. The number of organisations now involved in patient and public involvement has led to concerns about overlap. In general the record of the successor bodies have been similar to that of CHCs: some good, some bad and some middling.

96. The Department provided a number of reasons for the decision to abolish PPIfs and CPPIH. There was a need to adjust to changes in the NHS, including the increasing diversity of providers, the growing emphasis on commissioning and primary care and the need to include social care within patient and public involvement structures. There were also concerns that PPIfs had too few members and were not representative of the communities they served. The present system is also too bureaucratic and does not provide value for money. According to other witnesses, the Department decided that it had to abolish CPPIH because of its manifest failings and subsequently abolished PPIfs as well, almost as an afterthought.

97. Several witnesses argued that PPIfs should remain. They may have a small, unrepresentative membership, but this could be improved and, in any case, there was not a large number of people willing to do work of this type. Moreover, they could develop to take account of changing circumstances. The balance of evidence suggests that these witnesses may be right. Once again the government has abolished an institution a few years after its establishment. We are concerned that the Government has taken insufficient account of the cost of change. Abolishing established structures and creating new and untested institutions has not proved successful in recent years.

15 HC Deb, 22 July 2004, col 584 Back

16 Kings , Increasing the Public Accountability of Primary Care Trusts, [not printed] Back

17 Q 122 [Barrie Taylor] Back

18 While they did not have an extensive remit within primary care services, they did have a direct monitoring role over the health visitor service and midwifery through the Health Authority. They were also required to meet Family Practitioner Committees (FPCs), which comprised GPs, pharmacists, opticians and dentists, at least once a year and these bodies had a duty to respond to CHCs' Annual Reports. In the early 1990s, when FPCs became Family Health Service Authorities (FHSAs), the relationship became closer as FSHAs were required to consult CHCs on new service developments Back

19 Ev 145 (HC 278-II) Back

20 Kings Fund, Increasing the Public Accountability of Primary Care Trusts, [not printed] Back

21 Eg. Ev 334, Ev 145 or Ev 160 (HC 278-II) Back

22 Ev 52 (HC 278-II) Back