Select Committee on Health Written Evidence

20. Evidence submitted by Community Investors (PPI 128)


  1.1  Community Investors' evidence is drawn from our individual and collective experience of playing an intermediate agency role in supporting local people, service users and groups to engage with a range of attempts by local and national government and health bodies to achieve patient and/or public involvement in health and social services and other decision-making, including regeneration. Community Investors has acted as a Forum Support Organisation to PPI Forums in North London since inception in December 2003 under contract to the Commission for Patient & Public Involvement in Health.

  1.2  It is clear to us from our experience that:

    —  Effective patient and public involvement increases the likelihood that decision-making in health and social care will benefit users and communities

    —  Terms of reference for decision-making in health and social care should be developed to foster equity and trust among stakeholders

    —  Effective PPI requires independent PPI bodies and PPI support organisations, free from the conflicts of interest of providing health or social care services

    —  Those potentially most affected by proposed changes in the NHS should have their views and interests demonstrably taken into account before decisions are finalised

    —  Repeated changes in patient and public involvement structures absorb scant resources which could otherwise be used in improving patient care and public well-being, and if not evidently necessary can undermine trust and demoralise those involved, including staff in NHS and social services.


  2.1  Community Investors is a strategic development agency established in 2001.  We believe that local people, with their intimate knowledge of the needs of their communities, have a critical part to play if there is to be effective and sustained economic, social and environmental transformation. We work as far as possible at a strategic level; many of our activities are innovative and involve networking, support to others, acting as a third sector interface between government and community and making recommendations on policy and standards.

  2.2  Community Investors has a diverse staff team with backgrounds in a variety of fields, including local government, the voluntary sector (including intermediary agencies) and social enterprise, largely within areas of high deprivation. Research is a critical part of our work and includes managing or undertaking studies of issues which matter to communities, producing briefings and discussion papers and helping to bridge the gap between academic researchers and local people.

  2.3  Our evidence draws on our work in the field of user and public engagement and on our collective experience over many years, and addresses the following questions:

    —  What is the purpose of patient and public involvement?

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

    —  Why are existing systems for patient and public involvement being reformed after only 3 years?

    —  In what circumstances should wider public consultation (including under Section 11 of the Health and Social Care Act 2001) be carried out and what form should this take?


  3.1  Patient and public involvement (PPI) should ideally reflect partnership working to improve care and wellbeing. This should in turn help to foster a climate of greater equity and trust among stakeholders where the interests of and feedback from patients and/or public (whether any one of them is present or not) are demonstrably taken into account and thus more clearly planned for, including fulfilment of associated essential needs, such as transport and access to premises or advocacy.

  3.2  Patient and public involvement in the new NHS, published by the Department of Health in 1999, is a valuable statement of what PPI can and should offer. "Only by involving local communities can we gain a better understanding of how local services need to be changed and developed. By creating greater local ownership of health services we can improve the quality and responsiveness of those services and reduce health inequalities," states the foreword. Indeed "Working effectively in partnership with patients can also be of great benefit to the NHS. It delivers better results for individual patients and better health for the population." This document contains useful pointers on ensuring that "patient and public partnership is genuine, not token, so that people at a local and national level, are fully involved in decisions both on their own care and on the way in which services are provided."

  3.3  Strengthening Accountability: Involving Patients and the Public: Practice guidance: Section 11 of the Health and Social Care Act 2001, published by the Department of Health in 2003, along with associated Policy guidance, is also helpful. Reasons cited to involve and consult include:

    —  Seeking the views of others and having mutual regard for them is an important element of planning.

    —  Services are designed and adapted to respond better to people's needs.

    —  A consultation allows alternative proposals to be developed.

    —  It demands that proper time and thought is given to patient's and the publics' views on a proposal and ensures the development of an evidence base for important decisions.

    —  The experience of patients', the public and local communities knowledge can be used to benefit others.

    —  Better decisions are made because more people's views, perspectives and suggestions are heard.

    —  Major decisions are more transparent and the process for reaching them is understood.

    —  Trust is built between communities and the health service.

  3.4  The health and social care system is complex, involving many interlocking strands and participants whose input is important if successful outcomes are to be achieved, not least patients and carers themselves. Well-intentioned initiatives announced by the Secretary of State or a Strategic Health Authority may not have the desired effects unless shaped by frontline experience and adjusted through feedback by those most intimately affected.

  3.5  PPI can also be seen as an aid to performance management and improvement, enabling senior management or central government to check whether their instructions to frontline providers of care are being followed (for instance on access to GP services). Where there is an overlap of priorities (eg on hospital cleanliness) this can be of value, but it should be borne in mind that users and communities may have a different perspective on quality and access, and this should not be lost.

  3.6  In particular, concerns raised through PPI Forums, Patient Advice and Liaison Services, Independent Complaints & Advocacy Services, Trusts' own complaints mechanisms, Ombudsman's rulings, Judicial Reviews and other legal proceedings, while often uncomfortable for the NHS, can be valuable not only in achieving redress for individuals but also in rectifying system errors and patterns of poor performance. While there are some people who project on to NHS and social care personnel their dissatisfaction arising from elsewhere, others who are unhappy about their treatment may have just cause. All too often, however, local people (especially those in poor health or who are not very assertive) find it difficult to get due recognition of and recompense for what has gone wrong, and organisations to learn from mistakes.

  3.7  Regrettably, PPI is sometimes regarded as solely a presentational matter. For instance, deliberative events on service reconfigurations to fit in with the NHS white paper "Our health our care our say" are sometimes treated as part of a drive not only to fulfil legal obligations but also to convince local people that proposed changes are beneficial; any reluctance is assumed to spring wholly from lack of understanding and fear of change. It may be assumed that professionals have a complete grasp of all that is important. So when reasonable concerns are voiced, for instance that adequate community services will not be in place in time to cope with reduced capacity in the acute sector, bearing in mind population needs, these may not be properly heard. In considering changes to complex systems, it is helpful for these to be scrutinised thoroughly and from the perspectives of different stakeholders, and bearing in mind that gains in one area may be offset by losses in another. Meaningful PPI may seem to slow down the modernisation of the NHS, but is vital to maximise its benefits and minimise unintended negative consequences.


  4.1  Following on from the points made above, PPI can be:

    —  systematic or arising from individual or collective reactions to a particular event they have observed or experienced which may have wider consequences;

    —  open-ended—enabling users, carers, local people and their representatives to make suggestions or discuss concerns—or based on a fixed format, for instance the patient survey;

    —  involving all who wish to contribute or just representatives, whether elected, volunteers or a random sample.

  4.2  In our experience, a combination of methods and approaches can yield rich results. However it is important that all who might be profoundly affected by a decision (even if senior staff believe it will be beneficial) have an opportunity to comment if possible.

  4.3  It is also important to bear in mind, in the words of Baroness Finlay of Llandaff in the House of Lords in 2002, "The independence of the view of patients is crucial. I cannot over-emphasise how vulnerable patients feel when they are ill. If they feel that they are complaining into an organisation on which they are dependent for their care, they are terrified that there may be some backlash against them. Healthcare professionals ignore the need for an independent patient voice at their peril, because that is the safeguard in ensuring that we improve the standards of practice."

  4.4  While current policy emphasises the important area of PPI in commissioning, input on operational matters is also important. What might seem trivial to someone comparatively healthy may take on huge significance to people who are extremely ill, frightened, confused or in pain. Moreover, serious problems can arise when NHS staff and managers are not attentive enough to the practicalities of delivering an excellent service. The increasing involvement of diverse contractors means that new complexities affecting patient and public access and care are likely to arise.

  4.5  The strengths of patient and public involvement forums include their ongoing relationship with trusts and local patients, so that they can pick up and track progress, helping NHS managers and clinicians to evaluate whether their attempts to deal with a problem have been successful and identify alternative approaches if necessary. Continuity and the development of mutual understanding, while maintaining a critical distance, are important. Forums can also work more flexibly and quickly and with greater patient focus than larger statutory bodies.

  4.6  It is helpful for those seeking to represent user and public interests to be committed to the highest standards of public service and equality, especially since experiences of health care and prevention can be so diverse. Inclusive methods should also be used, as discussed in numerous documents.

  4.7  One approach which we have found useful—and which is particularly relevant in the context of an emphasis on multi-professional and multi-sectoral partnership working—is the development of equity terms of reference. If, for instance, different "sectors" are represented on a joint planning/commissioning body (eg NHS, local authority, users/carers/voluntary sector), a quorum in each "sector" must be achieved to enable certain decisions to be made. Stakeholders who wish their own concerns and interests to be advanced are thus required to listen to and negotiate with others, and take other perspectives into account. After a while, this can foster a culture in which partners come to consider issues from different angles even before they discuss these with other "sectors". We can give further information on application, if helpful.

  4.8  Changing organisational and professional culture to foster awareness of the need for PPI, and the skills to make it effective, has been mentioned in many documents, and remains vitally important. Training is part of this, so that PPI is seen as the business of all involved in health and social care, though specialists will continue to play a necessary part. Otherwise, even if organisations manage to meet their legal obligations, in practice decisions will continue to be made without adequate input from patients and the public and due consideration of how they will be affected.

  4.9  Central government guidance and the legal framework are also important in nurturing adherence to good practice in PPI. Unfortunately at present, because of resource pressures and a fragmented approach to efficiency which focuses on individual components rather than whole systems, cost-cutting measures are sometimes being implemented without due consideration of potential negative consequences: just as medication may have undesired side-effects because of the complexity of the human body, so too may service changes in the context of a complex system. Moreover, non-executive directors and board members are being continually reminded of their duty to stay within budget, but less emphasis is placed on their responsibilities for ensuring adequate standards for all and safeguarding equality and human rights for those with health-related needs. Ensuring meaningful PPI, and continuing to remind professionals of the need for a holistic person-centred perspective where different sectors do not try to shunt costs on to others (including patients and carers themselves) but rather cooperate for the best outcomes, are important.


  5.1  The current PPI system has demonstrated valuable successes as well as shortcomings, and it seems to us that—whatever the pros and cons of the proposed reforms—many familiar with the current system are not convinced of the need for another major upheaval after a short time, as opposed to improving the workings of current arrangements.

  5.2  When community health councils were abolished against strong opposition, the government insisted that, because "forums are basing themselves on the services of a particular trust, they will be able to focus very much on the concerns of patients using those services. That will be a great advance" (to quote Lord Hunt in 2001), though linking mechanisms were acknowledged as necessary. Without wishing to revisit the controversy over the abolition of CHCs, it has not been made clear why the government has changed its position completely (rather than, say, emphasising the existing responsibility of forums to cooperate on matters of joint concern and the relevance to commissioning matters and patient pathways).

  5.3  Again, with regard to the effectiveness of the existing PPI system, it is not clear why strategic health authorities (SHAs) have not generally been doing more to monitor the implementation of the guidance in Strengthening accountability and utilise the Performance Improvement Framework for Patient and Public Involvement in the NHS, also published in 2003, in particular seeking "Documented evidence of liaison with PPIFs and evidence that feedback has contributed to service planning and delivery". Indeed, SHAs themselves have not always fully demonstrated their compliance with Section 11 and shown how user and public input has helped to shape their decisions. Rightly or wrongly, the impression has perhaps been created that the integration of PPI into decision-making has been unevenly promoted at the higher levels of the NHS, despite the work of a number of champions, and this has made the task of PPI forums and local NHS PPI leads more difficult.

  5.4  It is also unfortunate that the impression may have been created that ministers and civil servants take Parliament's assent to the proposed legislative changes to PPI for granted, and are asking for time and money to be invested in the new system before it has been properly debated, refined and finalised.

  5.5  Frequent system reform comes at a price, especially since some time is required for the glitches in any new set-up to be removed and effective working achieved. At any rate, if LINks are to be created only to be reviewed a few months later and abolished in two-four years, as would seem likely if current patterns continue, this would be unhelpful, and further undermine confidence in the efficacy of supposed improvements to PPI structures.


  6.1  Proposed legislation suggests that the duty to involve and consult should be confined to "significant" proposals. It has become apparent that what might not seem significant to a senior manager may be perceived and experienced differently from the perspective of a service user or carer.

  6.2  The point has been made elsewhere that, where it is unclear whether wider consultation is needed, forums should be able to advise trusts on this, if kept informed at an early stage on service proposals. Obviously there will be certain matters such as major changes to how and where services are delivered on which users and carers should be consulted, and wider reorganisations on which the local public's views should be sought.

  6.3  Whatever system for PPI is ultimately agreed, it is important that, as stated in "Strengthening Accountability" guidance "Services are designed and adapted to respond better to people's needs", "proper time and thought is given to patient's and the publics' views", there is "an evidence base for important decisions", "Major decisions are more transparent" and "Trust is built between communities and the health service."

Timothy Modu

Chief Executive, Community Investors

10 January 2007

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