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Public Involvement in Health Policy Development
- Peter M Lapsley (17 January 2004)
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Every voice counts - not just patients
- Andrew G Craig (20 January 2004)
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A cautionary note
- Ike Anya (22 January 2004)
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Public involvement in health care: Lessons from developing countries
- Jean-Pierre Unger, Pierre De Paepe, Patricia Ghilbert and Andrew Green. (22 January 2004)
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How to motivate members of the public to become involved
- Judith H Harvey (28 January 2004)
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Levels of Public and Patient involvement
- William R Smith (29 January 2004)
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Member of The Public Replies
- John A.D. Macleod (26 November 2004)
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PPIs what are you doing? .
- susanne mccabe soostevens@hotmail.com (6 December 2004)
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Peter M Lapsley, Chief Executive Skin Care Campaign, Hill House, Highgate Hill, London N19 5NA
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Editor - Florin and Dixon's excellent paper brings coherence and clarity to what has hitherto been a remarkably muddled debate. Two things are worth adding. First, the more devolved and local does public involvement in health policy development become, the more do the government's national strategy and targets become givens. For example, there was no public involvement in the the British government's decision to focus on mortality and cure (things that are relatively easily measurable) at the expense of long-term medical conditions which chiefly affect the quality of people's lives. But that focus has become a given that will necessarily dominate local health policy development. If governments wish to provide the sort of healthcare people want, then there is a real need for public involvement in health strategy development at the highest level. Second, there has been and still is a tendency to see public involvement as something separate from the rest of health policy development instead of an integral part of it. Dermatology is a refreshing exception. The Action on Dermatology (AoD) Programme was established in 2000 chiefly in response to long waiting times. A task group was established to identify, develop and disseminate good practice in the delivery of dermatology services. Essentially, and although numbers have varied slightly over time, the task group consists of two or three representatives of the Modernisation Agency, two consultant dermatologists, two dermatology nurse specialists, two GPs actively interested in dermatology, two patient representatives and a pharmacist. Everybody within the group has equal status. There is no politically correct pandering to the patient representatives, of whom I am one, but our views are weighed equally with those of others and we are most certainly not 'token patients'. I believe that it is, in large part, this inclusiveness and egalitarianism that has made the AoD programme so successful. Its findings were published in a well-received Guide(1) and are now being developed further within a dermatology sub-group of the Long Term Conditions Care Group Workforce Team. So useful have all parties found the AoD task group as a forum for the exchange of information and ideas that it has been kept running despite funding for the AoD programme itself having ceased in March 2003. Peter Lapsley, chief executive, Skin Care Campaign (1) Action on Dermatology Good Practice Guide, NHS Modernisation Agency, January 2003 Competing interests: None declared |
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Andrew G Craig, Partner 67 Gosberton Road, London SW12 8LG
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Florin and Dixon’s dissection of the rationale for public involvement in health care is curious (1). They philosophise about its meaning and even its desirability when, for everyday NHS purposes, the Health and Social Care Act 2001 settled the issue. Section 11 of the Act is an unambiguous “must do”: NHS Trusts, PCTs, Strategic Health Authorities and Ambulance Trusts must make arrangements so that ‘persons to whom … services are being or may be provided are, directly or through representatives, involved in and consulted on’ all aspects of service planning and operation. This is about more than current patients. We have copious “how to do it” guidance. Patient and public involvement is even one of the six pillars supporting the hallowed temple of clinical governance. Foundation Trust hospitals have been brought within the statutory public involvement net too. The time for speculating is over. Now we need empirical evidence that involvement makes a difference to how services are commissioned and provided and, crucially, how they are perceived and experienced by users. Health and social care is a continuum of services from the users’ perspective. Their involvement along that continuum is, after all, only a process. It should be leading to shared power in decision-making and genuine user-provider partnerships that improve things for all concerned. There are no short cuts or quick fixes to this type of involvement, as the national evaluation we undertook for the Department of Health of the Pilot Patients’ Forums found (2). Joint health and local government investment in realistic community development strategies is needed for sustainable engagement to take root. It is not a question of needing to shift the emphasis to patient involvement, as Florin and Dixon suggest, at the expense of the more diffuse public involvement dimension. Trying to increase the responsiveness of health services means that every voice counts, not just patients (3). But they rightly highlight the underdeveloped opportunities presented by user participation in primary care settings, especially as many users no longer recognise themselves in a depowered “patient role”. Our local experience in Wandsworth suggests that user participation groups in GP practices can create learning opportunities for mutual trust, responsibility and partnership which will stick when applied on the wider health care canvas. These benefits should not be overlooked in the dash for more involvement. Supporting practice-based participation could open new channels for compliance with consultation and involvement requirements and create a lasting dividend in the form of complex user involvement structures reaching out into the community. But it will take investment as well as good intentions to achieve that. Andrew Craig, Partner, The Moore Adamson Craig Partnership LLP andrew@mooreadamsoncraig.co.uk References 1 Florin D, Dixon J. Pubic involvement in health care BMJ 2004; 328: 159-161 2 MAC Partnership. Building Capacity for Pilot Patients’ Forums: the experience of recruiter and recruited (November 2002) downloadable from www.mooreadamsoncraig.co.uk 3 Anderson W et al. Every Voice Counts: primary care organisations and public involvement. Kings Fund, London: 2002 Competing interests: Andrew Craig is a partner in The Moore Adamson Craig Partnership LLP, a consultancy specialising in user and public involvement, research, policy and training. |
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Ike Anya, Specialist Registrar, Public Health Bristol North Primary Care Trust, King Square House, Bristol BS2 8EE
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Florin and Dixon's article raise important points about the need for clarity on the issue of increased public involvement in decision making in the NHS. Two points are worth emphasizing : First, the potential for the entire process to be reduced to a tick-box exercise, where trusts co-opt "tame" representatives to rubber-stamp decisions ; and secondly, the potential for "professional" public representatives to emerge, whose views are not necessarily representative of the public's and who turn up as public representatives on every committee and board. The process by which the public is involved in making health service decision needs to be transparent and open, and may require extra effort, to ensure that the process is indeed inclusive. Competing interests: Employed by the NHS |
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Jean-Pierre Unger, Senior Lecturer, Public Health Department, Institute of Tropical Medicine Prince Leopold 2000 Antwerp, Belgium, Pierre De Paepe, Patricia Ghilbert and Andrew Green.
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Sir, The multifaceted experience of community participation in developing countries could enlighten the issues pertinently raised by Florin and Dixon (1). Community participation has been strongly promoted in public institutions for over 25 years since the 1978 Alma Ata Declaration. Approaches range from health facility committees, management of locally generated income (e.g. Bamako Initiative), devolved elected governments with health responsibilities and community meetings. Their effectiveness in achieving change, democratic accountability, and dialogue with professional and bureaucratic powers depends on the adjustment of participation design to the context. The rationale for community and patient participation differs - the latter entails negotiations on diagnosis, treatment, follow up, life mode, and individually tailored prevention. The two strategies are thus not, as suggested in the article, substitutes but different in their purpose. Experience suggests that pluralistic boards of trustees combining community representatives, civil servants and health professionals can contribute to: improve quality of care and coverage; reduce corruption, and patronage; define and apply patients' rights; monitor access to care; encourage payment modes consistent with solidarity; organise credit for indigents; penalise irrational utilisation of services; control costs; favour use of essential drugs; select priority disease control programmes; organise mutual aid associations and link them to the management of health facilities (2,3,4). To do this effectively, community representatives require access to accurate information provided by motivated managers and professionals willing to collaborate with them. What are the lessons for industrialised countries? Firstly, medical practice and health management differ structurally according to whether they are performed in the public interest or for profit (5). Public funds should be used in the interest of both the individual patient and the public. Together with democratisation of management and responsiveness of health care, public involvement should contribute to the selection of quality standards for health care delivery and management. Secondly, transcending the concept of “community”, the social composition of participatory bodies is critical, at all levels. Strategic planning can help identify social organisations to be involved in co-management. Thirdly, biomedical methods alone applied to the evaluation of “interventions” fall short of reasonable assessment and planning of participatory mechanisms. A multi-disciplinary (including political) approach is needed to conceive them. Finally, continuous education, professional bodies and pressures exerted by social organisations can lead some health professionals to provide user representatives with information likely to make public involvement in health care relevant. 1. D. Florin and J. Dixon. Public involvement in health care. BMJ 2004; 328: 159-161 2. H. Annett and PJ. Nickson. Community involvement in health: why is it necessary? Trop Doct 1991; 21: 3-5 3. H. Van Balen. The Kasongo project: a case study in community participation. Trop Doct 1994; 24: 13-16 4. D. Levy-Bruhl, A. Soucat, R. Osseni et al. The Bamako Initiative in Benin and Guinea: improving the effectiveness of primary health care. Int J Health Manage. 1997; 12 (Suppl. 1): S49-S79 5. JP. Unger, B. Marchal and A. Green. Quality standards for health care delivery and management in publicly oriented health services. Int J Health Plann and Manage. 2003; 18 (Suppl.1): S79-S88. Competing interests: None declared |
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Judith H Harvey, Freelance GP non-principal Central London
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I believe that meaningful involvement of patients is the key to effective public involvement. Only if ordinary members of the public are willing to give their time to sitting on patient forums, completing questionnaires, and becoming active members of foundation trusts, will the NHS gain the perspective of the public. The problem is how to engage members of the public. Unfortunately, those who take up invitations to participate may do so because they have an axe to grind. Too many of the rest are suspicious of finding themselves the token patient, presented with a mountain of incomprehensible documents to read, sitting unconsulted in endless meetings, and being put in a position of responsibility without power. Perhaps members of the public have so little confidence that their contribution will be valued because that has been their experience as patients. If they do not feel part of a partnership with clinicians in the problems of their own health, they are unlikely to believe that time on committees is going to be well spent. Competing interests: None declared |
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William R Smith, Retired member of PPI Forum Home - SG17 5JH
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I found the Florin and Dixon article interesting and an example of academic thinking regarding public involvement in healthcare. My two year experience as a member of a pilot Patient's Forum showed that members of the public are able to influence only certain areas of a Primary Healthcare Trust's (PCT) delivery of consistent healthcare to the public. These are areas such as waiting room arrangements, appointment, transport, provision of computers to therapy services, etc. To add value at the policy and strategy level within a PCT by a member of the public and /or a patient will be far more difficult. As a lay member of a PCT's Clinical Govenance Committee I have found it difficult to comprehend the financial challenges, the business issues and have the courage to speak up and have my say. Prior to my retirement I served for over 30 years in the medical device industry in senior management positions and have a little knowledge of subjects medical. To be an effective member of the Commission for Public and Patient Involvement in Health (CPPIH Forum will involve some considerable time of absorbtion in our NHS culture. Competing interests: None declared |
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John A.D. Macleod, Retired (Home) 18 The Avenue, Wyre Vale Park,Garstang,Lancs.PR3 1PY
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The article about "Public Involvement in Health Care" is interesting, but one must always remember that it was written by a profesional. I must admit I am not, Iam a member of my local P.P.I.forum and I joined because the concept excited me. Now I am the first to admit that to become effective will take time and will also depend on the willingnes of the P.C.T. that I am attached to to accept someone like me and the other forum members into its decision making processes. I would add at this point, it also depends on how serious the governments intentions are. We as a society must not forget the circumstances that led up to the decision to bring the C.P.P.I.H. into existence. I am a member of "the forum" attached to Wyre P.C.T.I attend Board meetings and also Governance committee meetings and I will admit that there are times when I think "what the blazes are they talking about" but as I gain experience these moments grow less,and I must add that I have never been made to feel inferior or that my views are not worthy. It is easy to criticise, and it is easy to doubt, and I don't know myself whether we, as Patient groups, will be succesful , but I do know that I will try my hardest to make them so. Competing interests: None declared |
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susanne mccabe soostevens@hotmail.com, retired cf24 3pf
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It is necessary that people who have not yet become too sceptical about the concept of genuine 'public/patient involvement' do give it a whirl.....but lessons from past excercises should not be dismissed.....otherwise new members to such forums will be constantly reinventing the wheel, often given the run about by more experienced participants of committees or be undermined in other ways. For example by focussing attention on issues such expenses claims (see latest CPPI News); or eg., whether members are 'representative', No one individual from any section, medical, managerial, patient,public or research group, can represent all members of a community. There has been one article published by 'spiked on-line' by re the decision by practitioners in the Camden North London area to 'quietly refuse' to comply with DoH directives to copy letters to patients. But despite being the Lead for Patient and Public Involvement in her locality,this was published as a 'personal opinion'. Is this not the sort of issue which should be presented to the community by a PPI forum? Some of the questions raised by the Kings Fund are in fact highlighted by the questionnaire produced on line by the Commission for Public and Patient Involvement.They request a wide public response. It seems a little strange that some of the questions are being asked so long after the PPIs have been set up though. They might have acessed some of the many especially 'user-led' studies produced over the past two decades, which address the questions they raise and to some extent raised also by the group from Kings Fund. There needs to be committment to taking forward the the aims of the PPI now. There is no information about the activities of the PPIs in Wales as yet. The r.r. from A D Macleod included no actual information about the decisions arrived at by the PPI. although his committment to the process is clear.It would be interesting to read of some of the work carried out by the PPI Forum by a person designated to do that part of the work. The information on web by PPI is fairly limited. Communities need to know where they can access information about the work of the PPIs in the locality - not just on-line if the PPIs are not to become another closed activity. Rather than focus his anxieties about the potential for confrontation by members of PPIs or obstruction from real partnership by others, as raised in his letter introducing the qustionnaire, Meredith Vivien, Head of PPI DoH needs to have faith in support from all participants if yet another partnership initiative is not going to slide into tokenism. Competing interests: None declared |
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