Select Committee on Health Written Evidence

6. Evidence submitted by Asthma UK (PPI 103)

  Asthma UK welcomes the opportunity to submit a response to the Health Committee's inquiry on patient and public involvement in the NHS. As the voice of people with asthma, Asthma UK is a proactive organisation that puts people with asthma first to offer solutions which improve the quality of life for people with asthma.

  Asthma UK is the charity dedicated to improving the health and well-being of the 5.2 million people in the UK whose lives are affected by asthma. We work together with people with asthma, their carers, health professionals, and researchers to develop and share expertise to help people increase their understanding and reduce the effect of asthma on their lives.

  We would particularly like to draw the attention of the Committee to the following points:

    —  Effective patient and public involvement improves services and brings benefits for service users, communities and the NHS

    —  Asthma UK is carrying out several projects intended to secure PPI in our own work and promote it in the health service.

    —  The establishment of a system in which LINks are given the powers and support to genuinely and effectively represent local communities is essential.

    —  Previous experience of PPI must be put to use in planning and implementing the new system.

    —  Asthma UK is especially keen for PPI in commissioning to be more robust and is working collaboratively with other leading charities to produce a web-based toolkit which will facilitate the work of commissioners in this area.

What is the purpose of patient and public involvement?

  1.  Well-implemented strategies for patient and public involvement hold substantial benefits for patients, carers, for communities and for the NHS. Only by ensuring the involvement is effectively sought can we secure mutual understanding and constructive dialogue between all those who use or work in the NHS.

  2.  The potential benefits for patients, service users and carers substantially lie in the improvements in service design and delivery that can develop from effective input. Through effectively mapping and understanding the patient journey and user experiences in collaboration with those who experience services, gaps in, and quality of, provision can be identified and the best mechanisms for service delivery can be developed. The additional information accessible to fully engaged patients may also affect demand and drive up standards through the exercise of choice. Patients also stand to benefit through being empowered to directly affect decisions about health, which will Lead to a more comprehensive interest in their conditions and a more constructive relationship with health professionals, improving concordance and helping to empower a greater number of patients to manage their own conditions.

  3.  The purpose of patient and public involvement from the perspective of communities is in securing a genuine say for local people and voluntary sector organisations. This, in turn, will increase legitimacy for decisions made on behalf of local people and improve public confidence in the services they receive.

  4.  These benefits are also of considerable value to clinicians and managers in the NHS. Better, more appropriate services should be a critical aim for NHS staff, and will also be a more efficient use of resources than some ineffective services that have been developed without adequate consultation.

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

  5.  There are certain principles that should run through all plans for patient involvement:

    —  Policy must be designed to ensure that it is inclusive, accessible and makes a positive difference to patients' health.

    —  There is no single or best way to secure patient, user and carer views. Patient and public involvement need not necessarily take on a single prescribed form at either national or local level, and we would not wish for national guidance to inhibit local innovation. Nevertheless, Asthma UK would like to see more evidence of commitment from the Department of Health to ensuring that involvement is embedded in some form across all functions of the health service and that LINks are given every opportunity, necessary support and effective powers to flourish and meaningfully represent local interest in health and social care.

  6.  Asthma UK seeks to ensure that people with asthma are engaged with our work through a number of mechanisms, many of which could be employed more widely. These include the development of health promotion materials in 25 languages, regular surveys and focus groups, and our Speak Up For Asthma volunteer programme.

  7.  A substantial current project is the development of a User and Carer Advisory Forum, for which we are now recruiting members. Asthma UK places huge emphasis on listening and responding to the needs of people affected by asthma, and the new forum is an important way to do this. Meeting four times a year and being broadly representative in terms of the diversity of the UK population, it will provide a communication channel between people with asthma, and carers of children with asthma, and Asthma UK staff and Trustees. The new forum will help contribute to shaping the way we do our work, the issues we engage with and what people with asthma and their carers think is important in improving the quality of life for people with asthma.

  8.  We are also seeking to enable commissioner to more effectively involve patients and the public in their work by developing a web-based commissioning toolkit for long-term conditions. This ground-breaking project is being developed in collaboration with the British Heart Foundation and Diabetes UK, and includes extensive advice on how to involve patients in each stage of the commissioning process. It also provides the opportunity to access a comprehensive library of related documents and to share good practice via case studies and a discussion forum.

  9.  Numerous other demonstrations of good practice in patient and public involvement can be identified. In 2004, for example, the London Borough of Newham produced a particularly effective review of asthma services, beginning with a public meeting and continuing to involve people with asthma as members of the Health Scrutiny Commission group throughout the review process. In 2006, Asthma UK's Challenge Fund provided support for the Adolescent Asthma Action and Help (AAAH) Project, a scheme in which a group of teenagers in Dudley produced a video resource for schools in order to explain the effects of asthma on their lives. Work such as this is greatly valuable, and similarly innovative projects should be actively promoted elsewhere.

How should LINks be designed?

  10.  Asthma UK would welcome the introduction of LINks centred around communities and patient journeys and coterminous with local government and PCTs. If they are carefully structured and given the appropriate support, these have the potential to build on the work of Patient and Public Involvement Forums (PPIFs) and take forward the way in which patients can participate at a local level. The establishment of LINks presents an opportunity to build on best practice, develop improvements and to demonstrate a real commitment to the practical implementation, as well as the principle, of patient involvement.

Remit and level of independence

  11.  There are some risks in arranging for LINks to be hosted by organisations outside the public sector. While we can appreciate the benefits of flexibility to local needs and of engagement with different local groups, we are concerned that local variation may make LINks substantially less effective in some areas than in others. We are also concerned that in being coordinated outside the NHS and the local authority, LINks may be easily sidelined. This must not be allowed to happen. Nevertheless, independence from government is an important principle, and the contribution that third sector host organisations can make in engaging with local communities and in implementing innovative practices is invaluable. Perhaps an evaluation of the arrangements for PPIF support would be helpful in order to extract lessons for the future.

Membership and appointments

  12.  Recruitment to LINks is a key concern in their establishment. Effective recruitment based on a community empowerment model takes time, particularly when aiming to engage people not traditionally involved in health decision making. This should be acknowledged in the planning process. Asthma UK recommends that government should learn from the experiences of CPPIH in recruiting to forums since 2003 and also from the voluntary, patient and community sector. Including membership of a LINk as a recognised public duty would also be useful in attracting patients and the public to participate.

  13.  There must also be a mechanism to engage with more patients, particularly with patients who have not had the opportunity to raise their concerns in the past. Local and national charities including Asthma UK should be able to help secure more comprehensive community engagement.

  14.  It is also important to recognise that retention is as important as recruitment and that members will only stay if they feel valued and well supported. Members should be reassured that they will be have any additional needs fully met through the provision of services such as interpreters, signers, and provision for meeting carers' costs. They should also be offered speedy reimbursement of all out of pocket expenses including loss of earnings and, where requested, they should be given payment in advance for potential expenses.

  15.  For some of the same reasons, LINks should not place too high a demand on participants. Many people found that the time required by Patient and Public Involvement Forums was too much for them. Like many long-term conditions, the impact of asthma on quality of life can fluctuate over time, so it can be difficult for people with asthma to make Substantial commitments.

Funding and support

  16.  Funds must be made secure and ring-fenced. It should not be possible for local authorities to divert money away from LINks to fund unrelated projects: doing so would undermine the credibility of the LINk organisation and inhibit its ability to function effectively.

Areas of focus

  17.  The focus of LINks should not be excessively restricted, and must be allowed to evolve in order to adequately address local concerns. Nevertheless, the particular focus on mental health services, ambulance services and specialist trusts which PPIFs have delivered in some areas, could valuably be retained. Consideration could also be given to developing joint working arrangements between LINks with regard to these particular services as they often cover multiple boroughs and, in the case of specialist trusts such as Great Ormond Street, may be national.

Statutory powers

  18.  We would suggest that LINks inherit the full range of statutory rights of PPIFs as well as being given the right to be formally consulted on substantial variation in service provision. Having the right to be formally consulted and, if necessary to refer matters to the Secretary of State for Health, would confirm that LINks were bodies with meaningful powers in matters of considerable public interest such as hospital closures or service reductions. LINks should also have clear powers to refer matters of concern to Overview and Scrutiny Committees for review.

National co-ordination

  19.  As indicated above, there is much to be learned from the experiences of CPPIH in this area. Some more indication from the Government of what—if any—institutional arrangements will be made for LINks at the national level would be very welcome. It is Asthma UK's understanding that National Voices is not intended to be a co-ordinator or national representative of LINks. If this is the case, then the nature of the relationship between LINks, National Voices and any proposed successor organisation to CPPIH should be made clear from the outset.

How should LINks relate to other organisations and avoid overlap?

  20.  Local Authority structures including Overview and Scrutiny Committees

  The Department of Health's latest guidance leaves the precise nature of the proposed relationship between LINks and OSCs unclear. It is specified that LINks will be independent but have the power to refer matters to OSCs and receive an appropriate response. However, it is also indicated that the LINk will only be able to take an active role in OSC review activities if the OSC deems this to be useful.

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?

  21.  Asthma UK is keen to see the improvement of patient and public involvement in general, but we are specifically concerned about how it is implemented by commissioners. We are pleased that the duties to involve and consult patients and the public are to be clarified, and that the duties of commissioners have been extended to incorporate responding to the community. The PCT prospectus proposed by the Department of Health is certainly one mechanism through which this can be achieved. However, Asthma UK feels it would be more productive to ensure that commissioners fulfil their duties to both consult with and respond to patients and the public in a more systematic and coherent way.

  22.  Commissioners must be genuinely open to receiving the views of the wider public, and to acting upon them. They should be proactive in reaching out to local people—by polling, by arranging to meet community members and leaders and by making connections with the newly established LINks. Responding to the community should be an integral part of this process: commissioners can feed back within their own meetings and through LINks, but they should also make their commitments explicit at the end of any period of public consultation, and ensure that they report on how well their plans to meet these commitments are progressing. This can then inform public consultation in subsequent commissioning cycles as part of an ongoing relationship between commissioners and patients.

REFERENCESi  Health Survey for England 2001. Joint Health Surveys Unit, 2003; The Scottish Health Survey 1998. Joint Health Surveys Unit, 2000; Census 2001 (Office for National Statistics: ONS).

Donna Covey,

Chief Executive, Asthma UK

10 January 2007

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