Select Committee on Health Written Evidence

104. Evidence submitted by Which? (PPI 106)


  1.  Which? is an independent, not-for-profit consumer organisation with around 700,000 members. Based in the UK, it is the largest consumer organisation in Europe. Entirely independent of government and industry, we actively campaign on behalf of consumers and are funded through the sale of our Which? range of consumer magazines and books. 2007 marks our 50th anniversary.

  2.  Which? has a long-standing interest in a wide range of health issues, and through our work we seek to make individuals as powerful as the organisations they have to deal with in their daily lives. Consumer influence and representation is one of the core consumer principles and the subject of patient and public involvement in decisions about health and social services runs through our work. In considering our response to the Committee, we have drawn on research and analysis across a number of health issues and we have focused on the principles and aspirations we hold for patient and public involvement.

Summary of Which? Views

  3.  Which? welcomes this timely inquiry by the Committee. Public and patient involvement should be at the heart of the NHS and the decisions it takes in commissioning and providing services, particularly in today's "patient-centred NHS". However, recent reviews and reforms lead us to question the Government's commitment to involvement and engagement of this nature.

  4.  In our view, listening and acting on the views of patients and the public should be a fundamental part of the core business of the NHS. However, we are often left with the feeling that consulting and involving patients and the public is tacked onto deliberations because of statutory duty, or worse not included at all. For example, decisions about the revised GP contracts were made without any representation of consumers' interests despite the significant impact these decisions had on the choices open to individuals about access to out-of-hours care.

  5.  We will address in detail some of the questions raised by the Committee. However, we would like to highlight three key points:

    (a)  We strongly believe that patient and public involvement in the NHS should be integrated across all NHS care, not limited to particular structures and opportunities. It should be a feature of all decisions, from 1:1 consultations between a patient and health professional, to national policy-making by the Department of Health.

    (b)  The success of patient and public involvement in health should be judged on the spirit and culture of openness in the NHS and a willingness to hear users' views, not solely on structures and bodies established to meet statutory consultation requirements.

    (c)  The frequent review and reform of patient and public involvement opportunities leaves consumers with a sense that Government commitment to the ethos of wide consultation is wavering.

What is the purpose of patient and public involvement?

  6.  The purpose of patient and public involvement in health is to deliver a health service that meets the needs of people using the NHS. Understanding the views, experiences and needs of patient and publics helps to inform the development of services so that they better meet the needs of its "customers". For example, we believe it has a key role in identifying choices for patients and the public under the Government's policy of Patient Choice. Individual patient choice alone cannot be relied upon to direct the provision of community and regional services; patient and public involvement is necessary to ensure the NHS meets people's needs.

  7.  Which? is concerned about the strict definition of patient and public involvement in health that has been adopted as common use. The debate so far has focused heavily on getting the right structures and organisations in place. But of equal importance is the emphasis on a spirit and culture of openness and listening that is also needed throughout the NHS.

What form of patient and public involvement is desirable, practical and offers good value for money?

  8.  Which? believes we need to be bold, creative and genuine and embed the voice of the patient and publics at the heart of the NHS as a clear way to improve the delivery of healthcare. It requires all those involved in delivering healthcare to be willing to actively listen to their patients and the public and to be willing to take action on the issues that really matter to people.

  9.  In addition to the formal arrangements for "voice", both health trusts and local authorities have duties to inform and consult the local community. However, significant variations exist in how they discharge these duties. If "voice" is to really act as a lever for change in the NHS, it must become central to everything that commissioners and providers do. They must also approach "voice" in more creative ways, seeking feedback and involvement at every stage and in different ways, particularly seeking out the views of less vocal sections of the community.

  10.  Outlining a form of patient and public involvement that is desirable, practical and that offers value for money will inevitably depend on one's perspective and priorities. Which? believes the key characteristics that patient and public involvement must display are:

    (a)  An extended reach for patient and public involvement, that seeks to include more of the population. According to Which? research in 2005, only one per cent of the population has ever been active in patient and public involvement forums. Yet, the public want to be heard, as nearly two-thirds of people interviewed in our survey said the public were not involved enough in local and national health care decisions. [69]

    (b)  The ability for every patient to feel they can give feedback. A Healthcare Commission survey conducted in 2005 found that only 6% of in-patients in England were asked for their views about the quality of their care while in hospital. [70]

    (c)  A clear and easy to use complaints procedure that ensures complaints are responded to effectively. Formal complaints can be valuable in highlighting improvements that are needed, but most people do not complain. Often people want an apology or an acknowledgement that things didn't go to plan. Which? also believes the NHS needs to be able to cope with more serious concerns. We believe patients need help when things go wrong to enable them to raise their concerns. Many patients are afraid to complain, fearing their care may be jeopardised as a result. This must change. Making a complaint about health care can be very stressful for patients and their families. At a time when they should be recovering, patients are faced with alien processes and unwelcoming procedures, which more often than not deter them from making a complaint.

    (d)  Investment and resources to facilitate success and deliver value for money. These funds would support the structures and tools needed to seek the views of patients and the public; provide resources to reconfigure services so they better meet patients' needs; and train and develop staff who are so crucial to patients' experiences of the NHS.

    (e)  A "willing to listen" culture throughout the NHS that will take on board comments, suggestions and complaints from the users of its services, with the aim of delivering better care. We believe structural and process changes may help to achieve some improvements but fundamentally until the doctor, the nurse, the PCT, the Secretary of State, see it as their job to ensure the patient is put first, then the radical shift in how the NHS provides its service will not happen. The patient must be put first.

  11.  Our concern is that frequent national reviews and reforms of patient and public involvement structures is indicative of the low value placed on them by Government. We believe formal patient and public involvement structures need a period of stability to develop a sustainable capacity in the community. Fundamentally, the efforts to develop "desirable" and "practical" involvement opportunities are restricted by a lack of sufficient resources both now and in the future.

  12.  We firmly believe that there should be a national standard of involvement and engagement of patient and publics in the NHS. The appointment of a Director for Patients and the Public by the Department of Health is only a recent one, whereas for years it has employed a Chief Medical Officer, a Chief Nursing Officer and a Chief Pharmaceutical Officer all of whom have considerable influence over policy and decision-making processes. The abolition of the Commission for Patient and Public Involvement in Health and the absence of a replacement body leaves a vacuum in the representation and involvement of patients and the public in national health decision making. It also means that it is not easy to build up a national picture of how policies are operating locally. This is a grave cause for concern.

Why are existing systems for patient and public involvement being reformed after only three years?

  13.  This is a question for Government to answer. The rapid reform is puzzling. In the light of Primary Care Trust reconfiguration, it is perhaps understandable that some changes to patient and public involvement would be necessary. However, the radical reform outlined in "A stronger local voice", coupled with the long heralded abolition of the Commission for Patient and Public Involvement in Health, leads us to question the Government's commitment to meaningful and sustained patient and public scrutiny, inspection and involvement in the NHS.

  14.  Whatever rationale is offered, it is clear is that changing the formal arrangements for patient and public involvement, the second within four years, creates a climate of uncertainty that has left patient and public involvement at a local level in a very fragile state.

How should LINks be designed, and how should LINks relate to and avoid overlap with other bodies?

  15.  LINks will bring together involvement arrangements for health and social care, involve community groups, not just health groups, and be able to take a broad view of health. While LINks offer some opportunities, Which? is not confident that they will have sufficient power or resources to play a major part in facilitating the changes required to achieve the vision of a patient-centred NHS. LINks are likely to be under-resourced to fulfil their responsibilities to health and social care, and although local authorities will receive a targeted specific grant for their support, it is not ring-fenced money. There is also considerable uncertainty about they will operate (including their membership, recruitment and governance structures) and accountability arrangements.

  16.  The present funding arrangements for NHS services means local scrutiny is appropriate. But replacing the current scrutiny of a trust's activity with oversight and involvement on a much wider geographical basis seems a retrograde step, lessening the opportunity for meaningful patient and public involvement in health according to the principles we have outlined here. The danger is less one of overlap with other bodies, rather that the huge remit that LINks will work to leaving some issues and services neglected.

  17.  We hope this inquiry can offer further guidance on the issue of concern about the operation, membership, and governance of LINks. From our perspective, the proposals have placed considerable responsibility on these loosely-defined organisations, without essential guidance, expecting them to fulfil a range of functions and duties that have historically proved tricky to run. As we move forward and patient and public involvement develops, it is essential that we build on what has worked well under earlier arrangements, and do all we can to ensure that previous experience is not wasted.

Kate Webb


10 January 2007

69   Unpublished Patient and Public Involvement Omnibus 2005. Questions were placed on a face-to-face omnibus. 771 adults in England aged 16+ were interviewed. Back

70   Adult Inpatient Questionnaire 2005, Healthcare Commission. Available at: (accessed 9 January 2007). Back

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