Patient Representation in the New NHS

Department of Health Briefing Jan 2001

Part One: A new voice for patients

1 The NHS Plan sets out a ten year framework to modernise England’s health service through a sustained programme of investment and reform. Improving the experience of each individual patient is at the centre of this programme, and the Plan sets out new mechanisms to increase the influence of the public and patients over the way that the NHS is run. Reform and innovation at local level will see community health councils (CHCs) replaced with a more powerful system that can back patients’ interests at every stage of their journeys through the healthcare system and give the public a greater say in the running of local health services.

2 Most fundamentally, the system needs to be redesigned to meet the needs of patients in the 21st century. The public consultation on the NHS Plan confirmed this. The system needs to cover primary care as well as hospital care, as it accounts for seven out of every ten patient contacts with the NHS. It needs to provide support to patients at the time that problems are happening, not just afterwards. It needs the option of independent advocacy to ensure committed support for patients when it is needed. It needs to have good democratic links with the local population and proper scrutiny of its performance. Meeting these changing needs means a new structure is needed for patient representation in the NHS, replacing the existing CHC system, which is over 25 years old. While some CHCs have done a very good job, their effectiveness and breadth of services across the country is patchy and too highly dependent on individual officers and members. Only in some parts of the country do patients receive a high level of support from their CHC when making a complaint about NHS services.

Patient Advocacy and Liaison Service (PALS)

3 The consultation on the Plan showed that while patients wanted support after things had gone wrong, they really wanted help while things were going wrong, to sort out problems on the spot. People often need help and support when they use health services. Being ill or in need of care is stressful. Health services can be intimidating. Even in the best run parts of the NHS, things will go wrong from time to time. To help make patients’ experiences with the NHS as smooth as possible, a Patient Advocacy and Liaison Service (PALS) will become a new core service for NHS patients.

4 Every NHS and primary care trust will establish a PALS. Their staff will be easily accessible to patients, their carers and families, performing three critical roles:

  • helping to resolve patients’ concerns quickly and efficiently, and improving the outcome of care in the process;
  • providing information to patients to help make contact with the NHS as easy as possible; and
  • acting as the visible contact point to enable patients and the public to access easily the new system of patient and public involvement.

Independent Patient Advocates

5 The whole of the NHS complaints system is being reviewed at the moment to build more effective and more independent procedures for patient redress. There will be times when patients need to rely on support that is totally independent of the NHS, to make a, perhaps very serious, formal complaint against the Trust. CHCs could not always meet this need; the new system provides for this in all parts of the country. When patients want to speak to someone outside the hospital or primary care trust, an independent advocacy service will be available.

Patient Involvement

6 While PALS and independent patient advocates will provide support to individual patients, the new system also provides new ways for ensuring that patients’ views are taken into account when important decisions about their local NHS are being made. At national level the Department of Health already conducts major national surveys of patient views every year on behalf of the NHS, and publishes results at Trust and Health Authority level. If Parliament passes the Health and Social Care Bill the NHS will for the first time have a statutory duty to involve and consult the public. The whole of the NHS – Health Authorities, Primary Care Trusts and NHS Trusts – must consult patients and the public on the planning of services and proposals to change or develop services. They will also carry out local surveys of patients’ views, the results of which will be linked to financial rewards for trusts.

Patients’ Forums

7 To form a focus for patient power in every part of the NHS, the new legislation provides for an independent Patients’ Forum for every NHS and Primary Care Trust. Members will be appointed by the independent NHS Appointments Commission and will include representative groups of patients and people from local voluntary organisations. The Forums will be able to look at every aspect of care from the patient’s perspective and comment on them. They will have new rights to monitor and review every NHS service that is used by the patients they represent. They will have a right to make inspections everywhere that NHS patients go – hospitals, doctors’ surgeries, nursing homes and private healthcare providers. The Forums will have the power to make reports and recommendations to trust boards. They will sign off the patient prospectuses that their trusts will be required to produce. The Patients’ Forum will appoint one of its members to be a non-executive director on the Trust or PCT Board, to ensure that patients’ views are at the heart of decision making.

Independent Local Advisory Forums (ILAFs)

8 While PALS will support individuals and Patients’ Forums will provide a strong focus for the patient voice in individual trusts, it is important that both patients and the public have an arena in which they can have their say about the whole of their local NHS. This will be essential if the NHS is to ensure that it is effectively meeting the needs of the communities that it serves. In the new NHS, Health Authorities have the key strategic role of ensuring that the Primary Care Groups, Primary Care Trusts and NHS trusts work together on the key national and local priorities. In shaping these priorities, Health Authorities need to consult with local people. To help ensure the local NHS is meeting effectively the needs of the communities that it serves, each Health Authority will establish an Independent Local Advisory Forum (ILAF). Arrangements will vary to suit the particular circumstances of different areas, but the proposals envisage a core panel of patients and citizens, including representatives from Patients’ Forums, plus a wider pool of representatives. The core members would advise and comment on the strategic development of local services, while the wider pool would be involved on specific questions.

Local Authority Scrutiny

9 The democratic deficit in the NHS at local level has long been recognised. In future, democratically elected councillors will take on from CHCs the important function of scrutinising local NHS services through local authority Overview and Scrutiny Committees (OSCs). Health bodies will have a duty to provide information about their activities and operation of their services to the OSC. Chief Executives of local NHS bodies will be required to attend their meetings twice a year to answer questions about their organisations. OSCs will make reports and recommendations to the NHS bodies that they review. NHS bodies will have to provide clear justification for any recommendation which they do not accept. Health Authorities will have a specific duty to consult OSCs on any major changes to services in their area. If the OSC finds that the proposed changes are not in the interests of the population, they will be able to refer the matter to the new national Independent Reconfiguration Panel. It may also do so when it believes that the process of involving the public and patients in the development of proposals was inadequate.

A National Voice for Patients

10 The council scrutiny committees, which will meet in public, will be able to refer contested major service reconfigurations to the Independent Reconfiguration Panel, which itself comprises one third patient representation. Patients will also be represented on the NHS Modernisation Board, the board and partners’ council and citizens council of the National Institute for Clinical Excellence. But, as many patients’ organisations have argued, at national level there is still a need for a single coordinating function to give patients a collective voice based on the issues and experiences that emerge at local level. There is also a need for a body to provide support, guidance, training and development to patient, carer and public representatives. So the Department of Health is backing a proposal from leading patients’ organisations to set up a feasibility study about how this body will work in practice.


11 The transition from a simple, but limited, CHC model of patient representation to a more sophisticated, wider ranging and powerful system will bring real benefit for patients and the public. The new arrangements will ensure:

  • fast and appropriate support to patients when they need it;
  • independent and objective support when patients want it;
  • real influence for patients and the public at every level of the health service;
  • public and patient involvement in the future development of health services;
  • independent and democratic scrutiny of health services by non-NHS bodies;
  • a national voice to give real weight to patient experience; and
  • for the first time ever, a NHS with a statutory duty to seek the views of its users.

Part two of this document sets out how these new arrangements will work in practice.

Part Two – How the system will work

Guiding the patient through the system

12 Individual patients are looking for support, wherever possible, to tackle their problem straight away. This is the role of PALS. At present many patients complain that they do not know where to go or who to turn to for assistance. It is essential that the new system is well sign-posted for patients. In part, this will be the responsibility of the PALS both to advertise their own services and to guide patients to the independent advocacy service. But we expect the Patients’ Forums and the scrutiny committees to take a particular interest in the quality of information and advice available to patients.

Patient Advocacy and Liaison Service (PALS)

13 PALS will act as the gateway for individual patients into the new system of patient representation and Patients’ Forums will have the responsibility to ensure that they do so fairly and effectively. Each PALS will be managed by the Trust or Primary Care Trust in which it is based. PALS staff will be employed to report directly to a senior member of the Trust’s management who will have responsibility for ensuring a high standard of patient-focused care.

14 To ensure that problems are resolved quickly and that Trusts change their services as a result, it is essential that the PALS work is integral to Trusts’ overall efforts to raise and maintain the quality of their health care. PALS will be accountable to the Trust board and indirectly to the Patients’ Forum through its non-executive director. The Patients’ Forum will have the explicit power to refer concerns over the performance of the PALS to the board of the trust or Primary Care Trust concerned. If, in exceptional circumstances, the PALS does not improve, the Patients’ Forum will have the explicit power to recommend to the Secretary of State to remove the service. Control of that PALS will then pass to the Patients’ Forum to commission an alternative source of patient support.

Independent Patient Advocates

15 In principle, the independent advocacy service in each area could be commissioned by a local authority or a health body. It could be provided by a local authority or one of the many public or voluntary sector bodies that provide a high standard of advocacy. We are continuing to consult on the most appropriate arrangements and the extent of local flexibility that should be encouraged.

Patients’ Forums

16 Patients’ Forums will be independent statutory bodies but there will be strong advantages in Patients’ Forums across a local health economy working together at local level and sharing administrative and expert staff. Like CHCs, Patients’ Forums will require a host employer. CHC staff are Health Authority employees. There is however a strong case for local authorities being the employer for staff of Patients’ Forums and providing the secretariat for the local Forums.

17 A Patients’ Forum will be established for every NHS Trust and Primary Care Trust to provide direct input from patients into how local NHS services are run. For the first time patients will have direct representation on every NHS trust board, elected by the Patients’ Forum. The Patients’ Forum will have half its members drawn from local patients’ groups and voluntary organisations and will be appointed by the Independent NHS Appointments Commission against criteria which ensure that they represent the nature of the communities that they serve. The other half of the Forums’ members will be drawn from patients who have recently used the trust’s services in a manner which ensures that they are properly representative of local patients, and then assessed by the NHS appointments commission against the criteria. Patients’ Forums and their members will be supported by the new national patients’ organisation.

18 Patients’ Forums will monitor and review PALS, even if a PALS has been removed from the trust’s management.

19 The views and experiences that Patients’ Forums collect will be valuable information when collated to cover the entire local health service. The combined views and experiences of all the Patients’ Forums within a single health authority area will be gathered together by the Independent Local Advisory Forum.

Local Authority Scrutiny

20 Local Authorities have overview and scrutiny committees (OSCs) to review local authority services and other services for their locality. The legislation gives these committees an additional responsibility of scrutinising the local NHS. There are new requirements on all NHS bodies to provide OSCs with information about their services and operation. The lead responsibility for scrutiny will lie with councils with social services responsibilities (County Councils, London Boroughs and Unitary authorities). In many places, scrutiny committees from more than one authority will need to work together to ensure an efficient scrutiny process. Subject to Parliament, regulations will be made setting out how OSCs can pool or share powers or cooperate together to do this. They will also set out how district councils may participate.

Investing In Patient Voice

21 The Government will invest some £33 million in the first year of the new system to fund the initial stages, the establishment of PALS and the final year of CHC work. A 50% increase in the funding currently available to support the patient voice in the NHS.

22 PALS will be funded by the Trusts in which they operate. Patients’ Forums will be funded at the regional level of the NHS, in the same way that CHCs were funded. ILAFs will be funded by health authorities. OSCs will be funded by local authorities. Independent advocacy services might be funded through Local Authorities or Health Authorities.


23 Improved patient and public representation and support is at the heart of the NHS Plan’s drive to build a modern service around the needs of the individual patient. The enhancement of the basic level of scrutiny provided by the CHCs of the 1970s is long overdue. The new organisations and services knit together to form a radical and powerful system which will ensure that patient and public pressure will build a more responsive and accountable NHS.