Context

8Wales is a country within the UK, it has a population of approximately three million people and a devolved assembly responsible for most areas of public policy including health and social care. Welsh Government has been supporting service user and carer involvement and empowerment for many years and the current policy “Together for Mental Health” (T4MH) [9] builds on a number of policies developed over many years [10, 11]. Health services in Wales are delivered by seven local health boards (LHB) which cover the entire country. Each LHB runs a local partnership board (LPB) which brings together key stakeholders in mental health including at least two service users and at least two carers.

9 An important component of T4MH was what it describes as a new partnership with the public and this included working with service users and family carers at an individual, organisational and strategic level [9][9, p. 6]. A key consideration was to ensure that a broad range of people were involved to reflect the range of people in Wales who are affected by mental ill-health either personally or as carers. Responsibility for overseeing the delivery of T4MH was given to a new body, the National Partnership Board (NPB) [12] which included service users and carers as members, each of whom has a deputy to cover their place in the event that they are unable to attend. The forum is designed to ensure that the work of the NPB is informed by service user and carer experiences from the whole country.

Developing the forum

10The forum development was facilitated by WAMH and had significant input from national and local government and voluntary sector representatives including groups bringing together service users and/or carers. Different formats for an effective involvement mechanism were developed and widely circulated across Wales as part of a consultation process. The resulting proposal was submitted to the NPB [13]. The proposal was approved by the NPB and the Mental Health Foundation (MHF) was asked to lead the facilitation of the forum. In order to ensure that forum members were recruited and supported effectively, a preliminary meeting was held in Llandrindod Wells, which brought together over 50 service users, carers and voluntary sector staff with responsibility for service user or carer involvement.

11 This meeting was facilitated by David Crepaz-Keay (a former user of Welsh mental health services and head of empowerment and social inclusion, at MHF) and Siân Richards (mental health strategy lead for Welsh Government) who continue to co-facilitate the Forum. The meeting set out and agreed the role descriptions for Forum members, the recruitment processes for their appointment and developed the key underpinning principles and values of the Forum. This included the Forum taking responsibility for recruiting and supporting the service user and carer members of the NPB. The materials and processes were then taken to a series of regional events around Wales reaching hundreds of mental health service users and carers to ensure widest possible awareness of the new Forum and the opportunities for service users and carers to take part.

Membership of the forum

12The membership of the forum is drawn from three different sources: service users and carers who are members of the LPBs; service users and carers who are members of the NPB and their deputies; and an additional ten people recruited nationally.

13 Responsibility for recruitment of the LPB members belongs to the seven LHBs and there is a degree of variation in the approach taken in these different areas, provided that at least two service users and two carers are recruited. The members of the NPB and their deputies are directly recruited by the forum members using an open recruitment process and role descriptions developed by the forum members. The final ten members are openly recruited but with priority given to people who bring experiences or background that are not reflected by other forum members to ensure the diversity of the forum. The total membership of the forum is about fifty people.

The forum meetings

14The forum meets three time each year. This is the same frequency as the NPB and has been chosen to ensure that the forum members can contribute fully to each NPB meeting and respond fully to matters that have arisen from prior meetings. The meetings are all day meetings and many people travel significant distances to attend. The meeting move around Wales, visiting each of the seven LHB areas in turn, this helps to share the burden of travel and gives all forum members the chance to host one of the meetings.

15 In addition to the standard administrative agenda items, there are usually two major discussion topics.

16 One will be a Welsh Government priority item and the discussion time is used to prepare the content for a report and presentation delivered to the NPB. These topics are often associated with national policy consultations; the discussions are frequently supported by expert contributors who are specialists in the particular field being discussed. They provide an opportunity for forum members to develop a more detailed and sophisticated response than would be possible for most individual service users and carers and in turn give those running the consultation a much stronger and broader service user and carer voice than is typically received.

17 The other main discussion item is usually a forum priority. There are many subjects that are of interest and the topic will be chosen at the preceding forum meeting. External expert presenters may also be invited to lead or contribute to discussions.

18 The forum has been meeting since 2013 and contributed to a large range of topics including reviews of mental health legislation and codes of practice, the financial arrangements which ensure money spent on mental health is protected (known as the ring fence), wider access to psychological therapies, and services for children and young people. The forum also produces its own part of the Welsh Government's annual report on the mental health strategy [14][14, p. 5], and contributes to the seven LHBs’ annual reports.

19 One of the major challenges for the forum is to make best use of the limited time available. Resources and time commitments mean that it is not currently possible for the whole forum to meet more often but sub groups are starting to complete some tasks and the forum is developing a website which should enable more work to be done between meetings.

20 The facilitation of forum meeting continues to include both a highly experienced service user facilitator and a senior Welsh Government official. This joint approach has been important in ensuring that the relationship between service users, carers and the statutory sector remains constructive even when there are significant differences in opinion that are passionately and sometimes forcefully expressed; or when policy is not clearly understood or where services appear to be performing less well from carer or service user perspective.

Resources

21The forum is wholly funded by the Welsh Government, but it also receives in kind support from a range of local and national organisations. The biggest areas of expenditure are venue and travel costs.

22 There are also more organisations who want to consult with the forum and at least one of these has funded an additional forum meeting to help develop their work. In the future, the forum intends to seek further funding from a range of sources. This would enable it to reach far more people, to meet more often and to strengthen further the links between local and national policies and practices.

Self-management and peer support

24Self-management is acknowledged as an evidence based approach to a number of long term health conditions [16][16, p. 89] and contribution that self-management can contribute to empowerment has been recognised by the WHO [17][17, p. 2].

25 The development of the MHF intervention has been completed entirely by people who have used mental health services and every course after the initial pilot has been delivered by former course participants. During the development of the courses, it became apparent that peer support added significant value to the self-management and reinforced the empowering nature of self-management and peer support done well [18].

26 The development took about a year from the point of receiving funding (and many months to achieve funding). It involved a four day residential process, followed by regional consultations in different geographical areas and two pilot courses which helped to develop a strong consensus on the content and presentation of the intervention and develop a number of facilitators.

27 The MHF intervention centres on personal goal setting and collective problem solving. Unlike some forms of self-management, it is not specific to any particular diagnosis or condition. The focus is on improving people's lives in the context of living with a diagnosis or condition. In the first three years, the intervention worked with over 650 people, many of the people who took part in the courses went on to deliver the training to others and this certainly enhanced the empowering nature of the work.

Empowerment benefits

28Evaluation of this approach has shown significant improvements in mental wellbeing and improved health lifestyles [19] and also has the potential to save money [20] with the beneficial impact improving over time. A number of the participants have used their stories and experiences to inspire and empower others [18].

29 As well as allowing people to achieve their goals and improve their lives, one of the key reported benefits is that it has given service users an opportunity to help others and build on their personal and collective experience and develop this into transferable expertise. Although the focus has been on empowerment at an individual level, it became apparent that there was benefit at a community level. All the self-management and peer support work took place in community settings. Almost all participants found out about the intervention through community groups or as a result of promotional events in community settings. This is consistent with earlier WHO work which highlighted the potential for self-management to increase social inclusion reduce stigma [17][17, pp. 3-4]. It also builds on whole community approaches that have been established for many years in places like Trieste, Italy, and Lille, France [21, 22] and are starting to be taken seriously in the UK [23].

30 These approaches see people who have used mental health services and their carers as an asset rather than as a problem or burden. They focus on building resilience and tackling community problems rather than isolating individuals. Taking a more collective approach has many benefits and fits well with the concept of co-production that has helped to link service user involvement to empowerment. It also draws on the concept of interdependence [24], which puts importance on the relationships between people and within communities rather than treating individuals with illnesses.

31 As a result of broader community interest in self-management and peer support generated by the MHF work, the approach has now been applied to both prisoners [25] and single parents [26], where the peer groups are not people who have explicitly used mental health services but are groups who have poor mental health or are known to have an increased risk of developing mental ill-health.