Discussion Paper

Proposal for the development of a national structure to support Patient and Public involvement in the NHS

This paper builds on an earlier paper about the implications of the NHS Plan involvement proposals that was prepared by the Long Term Medical Conditions Alliance (LMCA).[i] Following a DoH seminar where the LMCA paper was considered it was agreed that it would be helpful to develop some more specific detail around the idea of a national structure to support the involvement agenda.

It was agreed that representatives from the LMCA, College of Health and the Patients Forum[ii] would take the lead on preparing a paper on this subject to be presented at a NHS Plan seminar on 17 November.

The following paper sets out the argument for setting up a national structure to support the patient and public involvement agenda set out in the NHS Plan, as well as a number of proposals about how that structure might look and work. Because of the speed at which this process is moving forward - for example, any legislative changes or significant policy decisions required will need to be included in the Queen's Speech or the Modernisation Bill - this paper also includes an action plan for taking this work forward.

However, while the impetus for this paper is the NHS Plan it is important that this proposal be set in the wider context of the general need for a national structure to support representation of patient, carer, user and wider public interest groups in health. This is especially important in view of the plan to abolish CHCs.

Over the last three months there has been considerable discussion and debate about the proposals set out in the NHS Plan for patient and public involvement. There are still a number of outstanding issues that need to be resolved before a detailed framework for involvement can be confirmed, especially in relation to the roles and responsibilities of the Patient Advisory Liaison Services (Pals) and Patients Forums. In addition, decisions about the way that NHS complaints are dealt with will have to take into account the outcome of the review of the NHS complaint procedures - which is not expected until the New Year. In primary care, there is still work to be done to establish how the proposals for involvement will work at the general practice level, and there are issues about how individuals will be appointed to the various bodies that are being set up as a result of the NHS Plan.

Proposals for the way that patients and the wider public will contribute to the health service in the future are still evolving and there is a need for ongoing consultation as these proposals develop. This is a transitional phase - we are moving from the broad principles and framework set out in the NHS Plan towards implementation of detailed arrangements. However, there is widespread agreement that regardless of the final outcome of this process, there is a need to start putting in place an infrastructure to support the new arrangements for patient and public involvement measures.

The principles behind the patient and public involvement proposals in the NHS Plan have been widely supported. While there may be differing views on the detail behind some of the specific proposals it is also clear that these proposals, if implemented properly, represent an opportunity to greatly empower patients, carers and the wider public. However, as discussions about the NHS Plan have unfolded there has been growing recognition of the need for a national structure. Most of the arguments in support of a national structure have been discussed at various meetings and seminars - these are given below.

The Plan calls for a significant increase in the number of patients, carers, users and others with an interest in health who will be taking part in decisions about health services and health policy. This rise is due to an increase in the number of bodies with places reserved for 'lay' representatives or staff - including Patient Liaison and Advocacy Services (Pals) and Patients Forums in the 256 NHS hospital Trusts (not counting PCTS), as well as the Independent Local Advisory Forums in the 99 Health Authorities. There are also eight Modernisation Boards as well as the National Independent Reconfiguration Panel and the Citizens Council.

The NHS Plan also says that 1/3 of appointments to all of the new bodies being set up will be patients, carers, users or members of the wider public. Many professional bodies are also taking steps to increase the overall number, or at least the proportion of lay representatives on their Councils.

While the commitment to increasing public and patient involvement is welcomed there is an issue about the processes by which candidates will be identified and selected - and the capacity at the local and national level to find people to fill and to service these places.

In some local areas there are systems in place for appointments to bodies - for example, some local Centres for Voluntary Services (CVSs) as well as local authorities are involved in lay appointments to CHCs. However, there are variations in the way that these systems work from area to area - and they are not designed to handle the level or exact kind of demand for representation generated by the NHS Plan.

Many groups are already concerned about the impact of the increasing demand for this kind of representational work in relation to the following:

Many of the demands for representation call for a significant investment of time - in the main from individuals who have other responsibilities within their own organisations. In addition, most representational work is done 'for free' which means that organisations cannot buy-in support to help them to meet their own ongoing commitments while staff are involved in representational work. Some organisations are completely excluded from representational work because they simply do not have the resources to allow them to become involved.

Some groups also find it difficult to take part in representational work because they lack the necessary resource, skills or experience to work at a strategic level. For example, to be able to make links between the experiences of those who use health services and deficiencies in national policy. It can also be very difficult to keep up with changes in the way that the NHS works and how and where decisions about the health service are made.

There is also an issue about the need for the NHS to look at its own structures for supporting involvement. Past experience has shown that increasing involvement of patients, carers and other interested groups, creates resource and organisational demands on the NHS that have not always been met. At a very basic level if representation is to be meaningful it must be properly supported. For example, time must be built into the process to allow for a proper exchange of information and for feedback to be incorporated into policy, papers need to be sent out on time and officials need to be available to work with groups.

Process and capacity aside, it is very important that there is consistency in the way that people are recruited and appointed. This is not just about processes but also in relation to the criteria that individuals are selected against and the standards that they will be expected to work to.

This calls for the development of clear and consistent statements about what is expected from those who are appointed - for example, clear statements about expectations of those who are participating, national job descriptions and statements of competencies. This kind of framework would also go some way to help to ensure that there is a system for monitoring and evaluating - on a national scale - for example, through the identification of outputs, just how well the systems for patient and public involvement are working.

Without some kind of national approach there will be many wheels reinvented right across the health service. As is often the case some areas will be better at implementing the necessary processes and systems to support involvement than others - and in all likelihood it will be those areas that are better performers overall.

One of the objectives of a national structure could be to promote more opportunity and greater equality for public involvement. During the recent consultation on the NHS Plan there has been a great deal of discussion about the need to widen the pool of people who are involved in representation work. A national structure could help develop representation of those whose voices are often left out - for example, black and ethnic minority organisations, or small organisations that could usefully participate but that need some extra support to do so.

As with any system that supports the appointment of individuals to serve on public bodies, It is important that the systems for appointing patients, carers, users and members of the public are fair, open, and transparent. This reinforces the need for a national structure - even if in some cases the process is managed at a local level. This also raises another issue about the need for accountability in the way that these new bodies (or functions) operate. For example, through annual public reports or making information more generally available to the public. This accountability framework must be also be developed and managed on a national basis.

In order to be able to do their jobs effectively it is important that those who are appointed to act as patient or public representative receive ongoing support. This includes the need for high quality, standard training and development programmes. The NHS Plan does indicate that members of Patients Forums and Pals will have access to the new NHS Leadership Centre. We would recommend that access to the Centre be extended to individuals on other bodies who are presenting the patient, carer, user and wider public interest.

In addition to training, there is a need to develop a national networking forum where individuals can share and exchange information and experiences and learn from each other. This forum could be supported by the development of e-networking links.

Making involvement work at a local level, for example, at the Trust level is one thing. However, making involvement meaningful in relation to influencing health policy and strategy is another. Involvement at this level will only work if there are ways of pulling together the on-the-ground intelligence about health services and using this information to inform wider policy developments.

Without some form of supporting framework - that operates at the local, regional and national level - it will be virtually impossible to use this intelligence to influence policy development.

One of the more compelling arguments for setting up a national framework for supporting patient and public involvement is related to resources and the potential to realise savings from economies of scale. Without a national framework in place, each local area will be required to out in place their own systems for recruiting, appointing, and supporting those who are appointed to represent the patient or public voice in the health service. In addition to questions about the lack of consistency in approach there is clearly an issue about whether it makes sense to invest resources this way.

This is an evolving process and it is likely that the focus of national work would also change over time. For example, in the short term the key work requirement would be to get the broad operating principles and structure for involvement right. Over the medium to longer term the emphasis would need to shift to support recruitment and appointments, training, networking and monitoring and strategic activities. Some of functions that could be undertaken by a national body are:

Defining Roles and responsibilities of patient, carer and wider community representatives

· Lead in the process by which the new roles and responsibilities of patient, carer and representatives of the wider community are defined (as the proposals in the NHS Plan are further developed and confirmed) - including ensuring that consistent statements of expectations and standards are developed. At the outset, this would include responsibility for leading work on developing a UK model for patient, carer and public representation in the health service.

· Develop and implement national systems for supporting the recruitment, selection and appointment of representatives - including for example, the development of statements of expectations, person specifications, competencies and job descriptions.

· Develop and manage a data-bank of contacts and potential representatives (individuals and organisations) who are interested in participating in involvement initiatives

· Develop and implement strategies to support the involvement of under-represented as well as vulnerable groups - including black and ethnic communities and organisations representing the interest of smaller groups of users and carers and communities

· Identify training and support needs and develop strategies to support those needs - training needs could range from basic induction to the NHS, training on equal opportunities, working in committee settings, research skills

· Set up and manage a networking programme - with an emphasis on sharing of information and experiences, identification of good practice, support for individuals - for example, mentoring and buddy systems

· Facilitate communication and exchange of information on a broader level - for example, by using the network to keep members informed of national policy developments.

· lead in establishing formal links between patient involvement and other local, regional and national processes - for example, working with the Commission for Health Improvement to ensure that patient experiences are incorporated into their work

· Provide support for strengthening other strategic developments - for example in relation to new technology or the impact of European policy

There a number of possible models for putting in place a national structure to support the involvement agenda. Our preference is to draw upon the wealth of expertise and experience that already exists within patient, carer, user and public interest organisations, rather than to create a new organisation that takes responsibility for all of the aspects of the work highlighted above.

However, in order for this model to work there needs to be strong national leadership and co-ordination. For example, a national body with responsibility for identifying what is required to support involvement (e.g. training and networking needs) and co-ordinating input from other organisations with expertise in that particular area.

Setting up a national structure to support involvement has resource implications. Without more detailed work on the exact requirements for this structure it is difficult to be specific. On the other hand, it is possible to identify the key allocation of funds that are required to take a project of this nature forward.

Short-term project funding is required to support the development of a detailed plan for a national involvement structure. At the very outset of this work processes need to be put in place to ensure that there is ongoing discussion and consultation at each stage of the project.

· A thorough analysis of the specific involvement requirements that fall out of the NHS Plan is required. However, it is also necessary to take into account the wider involvement agenda. Even if the proposals in the NHS Plan change significantly there is a need for this work to go ahead - especially in view of the proposal to abolish CHCs.

· This analysis needs to identify the implications of involvement requirements - for example, the need for training/ support for individuals and groups to enable them to participate.

· This analysis also needs to look at the capacity of the NHS to be able to support and engage with representatives

· An audit needs to be undertaken of the expertise, experience and skills that exists with the existing community of patient, user, carer and public interest groups that could support the above requirements - this must also include an analysis of what is needed to assist less able organisations/groups to take part

· The development of a proposal for a national model/structure is required - including the design of the national organisation as well as development of standard structures and practices for local involvement arrangements

· A detailed plan for setting up a national structure - including identification of milestones; responsibilities, time-frames, resources etc.

In the medium-to-long-term the emphasis of work will shift from analysis of needs and design of a national structure to implementation. Resources will be needed to put in place the required structures, and people to support its operations.

The resource implications outlined above are not insignificant - but it is essential that the proposal for a national structure be properly and adequately funded. This means a specific, ring-fenced funding allocation.

Work on a national framework must be taken forward with some urgency. The group that met to discuss the requirement for a national structure (LMCA, College of Health, the Patients Forum) are prepared to form a consortium group[iii] to oversee this work. These are all national organisations with a large collective membership of over 150 other groups representing a wide range of interests. A core responsibility of this group would be to ensure wider involvement in the process including ongoing, extensive discussion and consultation about the development of the national structure.

1. Establish a consortium of patient, carer, and general health interest groups with responsibility for formally overseeing work on setting up a national structure. A group consisting of the LMCA, College of Health and the Patients Forum has already convened - it is recommended that this group form the core of that consortium.

2. Develop a detailed consultation/communication and intelligence gathering strategy to inform the development of plans for a national structure - by utilising a web-site to promote discussion but also by using other means of communication and networking to reach out to as wide an audience as possible.

There are two initiatives that are already under way that will support this work:

· The Patients Forum has set up a web-site to facilitate networking with member organisations - with some modifications this could be used as one of the strands of the consultation process. However, there is a need to ensure that other measures are also used to ensure more widespread involvement. Other measures like surveys and interviews with key representatives from patient, carer and public interest groups need to be developed.

· A conference called Shaping the Agenda - the UK patient's movement - is scheduled for 15 February 2000. The objective of this conference is to take stock of where the UK patient's movement is today and to consider models of involvement used in other countries. It is intended that the NHS Plan and the opportunities it presents will be a key focus of the conference.

[i] LMCA Paper, commissioned by the Department of Health and written by Judy Wilson, Director, LMCA and Ros Levenson, independent policy consultant

[ii] Meeting attended by Judy Wilson (LMCA), Marianne Rigge, Graham Lister (College of Health), Clara Mackay, Diana Basterfield, (Patients Forum), Judith Allsop (De Montford University)

[iii] It is also proposed that Professor Judith Allsop – De Montford University and adviser to the patients Forum - act as an external adviser to the group