How prepared are primary care groups for the government's ambitious agenda for involving the public in the NHS?
The NHS plan is the clearest commitment yet from central government to the principle of public participation in health service decisions. The plan is specific, unlike other policies, stretching back to Local Voices in 1992 and including the most recent, Patient and Public Involvement in the New NHS.
Itoutlines structures that NHS organisations must have in place to promote the public's voice in health service planning and decision-making. Thus trusts and health authorities will have to develop mechanisms to administer their public participation work, as well as identify budgets and develop specialist staff.
While there has been significant public and patient participation in the past, it has tended to become the realm of enthusiasts. This means that as the number of NHS organisations mushrooms, the expertise is bound to be spread ever more thinly.
In the South West, the regional office of the NHS Executive commissioned a survey of PCGs that revealed this is already happening. Board members in all 49 PCGs in the South West were asked to complete questionnaires in spring 2000. The results show a lack of preparation for taking forward public participation and uncertainty about how to begin to engage patients or the public.
Of the 294 questionnaires distributed, 186 were returned, with all but two PCGs responding.
Response was good from all board members, but best among lay members, 73 per cent of whom responded.
Questionnaires Some questions were directed at all board members, some at lay members, nurses, GPs, social services members only; some at chairs only and some at the chief officer only. Lay members were asked about their skills and experience before board membership; what other community activity they were involved in; the role of the lay member and what policy areas would benefit from additional public involvement. Chairs were asked whether board meetings were open and chief officers were asked what problems had been encountered and to what extent the local authority had provided support (see figure for results).
All board members were generally positive about the role of the patient or citizen in contributing to decision-making, particularly in the areas of health improvement and supporting fellow patients. But few members had had any training in participation techniques and very few were aware of published resources such as reference manuals or toolkits.
The survey began by asking for opinions on the purpose of patient and public involvement.
Responses could be grouped into three categories:
clinical governance, including assessing and improving service quality information availability and improving patient-professional communications;
local governance, which concerned accountability to local people and the scrutiny of decisions;
health improvement, including patient education and empowerment.
Among the different groups within boards, there was agreement that the clearest purpose was the clinical governance stream. But while GPs and lay members tended to identify local governance and health improvement about equally, nurses tended to identify health improvement more often and chief officers and social services members focused more on local governance.
When asked about the difficulties of involving local people, chief officers said that the principal problems were shortages of expertise, time and money.A number admitted not knowing where to begin, while very few were aware of resources available to help.A packed agenda made it very difficult to take time out to learn new skills, and local HAs rarely offered significant assistance in this area.
Many PCGs looked to their lay member to lead on patient and public involvement. Although lay members were well equipped to take on this role, they were rarely familiar with the health service and this could impede their work.
Deficiencies in skills and resources were by far the biggest problems, but some chief officers also pointed to negative attitudes of colleagues on the board and the lack of interest of the public. Others doubted that there was value in involving the public, as participants were unlikely to be representative of either the public or patients.
Despite their lack of knowledge and these doubts, all PCGs had embarked on some work to involve local people at some level (see figure). Close to 80 per cent had produced information leaflets about the PCG, and more than 60 per cent had involved people in planning through groups or stakeholder events. Fewer had used surveys (38 per cent) or focus groups (27 per cent) or had involved the PCG in health days or community events (12 per cent).
Plans for the future included websites (51 per cent) and more involvement in community activities (32 per cent), but comparatively few were planning further stakeholder events (18 per cent) or to involve patients in planning forums (12 per cent ) in the coming year.
Important to both existing and planned work were other partner organisations. This included local authorities with which the PCGs were working, local voluntary and community sector organisations and the community health council. PCGs tended to regard these partners, rather than the local health authority, as the source of ready assistance in working with their local public.
Disappointingly, social services members, while involved in initiatives like best-value and community development at the local authority, were unable to link this work with PCG activity.
The results from the South West provide an insight into the difficulties facing the health service in making the NHS plan a success. The NHS plan proposes several new structures at local level to enhance the role of the patient and citizen. For PCGs as they move towards PCTs, this will include developing patient advocacy and liaison services, patient forums and regular surveys of patients.
To succeed in this kind of dramatic expansion in involving patients and citizens in PCG/Ts, the NHS will need to develop significant capacity to support both the PCG/Ts and those taking part as members of patients' forums. PCGs were asked what kind of support they would like to see. The response was overwhelmingly for peer group support through good-practice networks, but also for local or regional advice and assistance from those with expertise in involving the public and patients.
Networks are not new in patient participation.
Anglia and Oxford region operated a peer review system for public involvement in the late 1990s - and there is evidence that it was associated with improved HA performance.
3But the NHS plan requires significant development of expertise across the country. In the South West, the NHS Executive has established a regional patient participation team that will aim to do just that.Network development, sharing good practice and making expertise available to trusts, PCG/Ts and HAs are all within their remit, but they will also provide support to lay participants in modernisation boards, enabling patients and the public to participate directly and effectively in making NHS policy.
If the public involvement envisaged by the NHS plan is to be achieved, efforts must be made to improve the skills of managers, professionals and board members at all levels.
1 NHS Management Executive. Local Voices. NHS Executive, Leeds, 1992.
2 Department of Health. Patient and Public Involvement in the New NHS. Department of Health, 1999.
3 Shepherd M. Results of a national survey of public involvement in health authority decision-making. Harrogate, Paper to 8th Annual Public Heath Forum, 2000.