Effective Support for Self Help / Mutual Aid Groups (ESTEEM) Stage 1 Interim Report: Executive Summary

Transcription

1 Effective Support for Self Help / Mutual Aid Groups (ESTEEM) Stage 1 Interim Report: Executive Summary 1

2 Acknowledgements We would like to thank the self help / mutual aid groups who gave up their time to take part in this study and for their continuing involvement in the research. We are very grateful to the practitioner experts with expertise in supporting self help /mutual aid for their contribution to this study, including representatives of Arthritis Care, Catchafiya (at the Afiya Trust), Epilepsy Action, Nottinghamshire Community Foundation, Speakability (London office) and Together. Finally we would also like to thank the Big Lottery Fund for funding this research. Project management team The research study is a partnership between Self Help Nottingham, Anglia Ruskin University and The University of Nottingham. The overall management of the project is led by: Self Help Nottingham Sarah Collis, Director Caroline Bell, Groups Training and Development Manager The research team consists of: Anglia Ruskin University Carol Munn-Giddings, Professor of Participative Inquiry and Collaborative Practices Melanie Boyce, Researcher Patience Seebohm, Researcher The University of Nottingham Mark Avis, Professor of Social Contexts of Health Sarah Chaudhary, Researcher Project Advisory Group A project advisory group, comprising the project management team and additional representation from the Department of Health, health and social care commissioning, practitioners, academics and self help / mutual aid groups, meets every four months to monitor the progress of the study and advise on issues arising. 2

3 1. Introduction Self help groups (SHGs) are associations run voluntarily by and for members living with a shared health condition or social issue. They provide a space for mutual support and learning based on members experiences and knowledge. This is usually seen as different to the support delivered by health and social care practitioners who often fail to understand the ways that SHGs differ from mainstream services and the types of benefit felt by members. The objectives of the ESTEEM project, which aims to help bridge this gap in understanding, are; to develop a typology of SHGs; to identify SHGs training and support needs at different stage of their development; and to produce and disseminate good practice guidance in order to facilitate effective collaboration between SHGs and health and social care practitioners. The project is being conducted by a partnership of Self Help Nottingham, Anglia Ruskin University and the University of Nottingham. It is funded by the Big Lottery. The project s ground breaking importance was recently recognised in the Universities UK and Research Councils report Big Ideas for the Future presented to Parliament by David Willetts. 2. Methods The study is taking place in Nottingham and Essex. It began in May 2010 and is being conducted in 4 stages over 36 months. This report is based on findings from stage 1 which took place over the project s first 15 months. The aim of Stage 1 was to give an in-depth account of SHGs that will provide the foundation for the good practice guidance to be developed and disseminated over the remaining stages of the project. This report provides a brief summary of the findings to date. Qualitative methods were used in order to gain a thorough understanding of SHGs. A sample of 10 groups in Nottingham and 11 in Essex was selected in order to provide a range of SHGs at different stages of development, with various structures, and addressing a variety of health and social issues. Interviews were conducted with group coordinators and group discussions took place with 10 SHGs in each area. A total of 10 further interviews were conducted across both sites with a range of practitioners with expertise in self help / mutual aid. 3. Findings 3.1 Self Help Groups Overview The SHGs addressed an array of illnesses and life situations. They comprised; ten physical health groups for long term conditions; 5 mental health groups,(3 generic and 2 condition specific); and 6 social issue groups for parents, ethnic minority communities and gay men. Five groups were gender specific. Most groups not only offered support and information, but also felt that they were a pathway to social participation for members whose physical, mental or social issues acted as a barrier against this. They therefore placed a high value on social contacts and activities beyond their regular meetings. Groups ranged in size from 2 or 3 to more than 30 core members who regularly attended meetings. The groups met, on a weekly to quarterly basis, in settings such as cafes, hospitals, third sector agency offices and community centres. Ethos, purpose and activities Groups identified themselves in terms far broader than self help expressing their fluid multi-faceted nature they saw themselves as community, peer, support and even friendship groups. 3

4 Members believed that their own experiences were the source of the group s wisdom. Their feeling of ownership and control was also seen by many as a key part of their philosophy. Mutual support was perceived by the majority of groups to be the unique, defining feature of SHGs. It was the process through which many of the benefits associated with group membership, such as countering isolation, increasing self confidence and coping with health conditions, were realised. Sharing information was another primary purpose for nearly all groups. Members not only shared clinical information, but offered tips about accessing and getting the best out of services. Members also perceived their role as spreading information beyond the group, for example by taking part in awareness days to educate people about their condition or situation and reduce the stigma that was frequently attached to it. Groups saw themselves as links within community networks, working with schools, pharmacies, employers, health and welfare agencies and other self help and voluntary groups. A number of members attended consultation and strategy forums with the aim of influencing statutory services. However, there was some concern that these processes could be tokenistic and that they excluded a range of people including those who asked difficult questions and those without fluent English. Despite the emphasis on members knowledge most groups placed a high value on professional input from clinicians such as specialist nurses who were frequently invited to speak at meetings. Some groups appeared to be developing from small, informal groups into larger organisations delivering services, such as children s activities and parents drop-ins, sometimes run in partnership with public agencies. They did not see this as changing their ethos of mutuality and informality. Impact The potential impact of membership cannot be overstated. Whilst some members primarily saw the group as a means of accessing information or participating on a social level, for others being part of the group had been a life changing experience. Members reported a sense of increased well-being, greater self confidence, reduced feelings of isolation, improved physical and mental health and a better ability to cope. Group structure The groups ranged from having no structure at all to being fully constituted as charities. The unstructured groups felt that a formal structure might undermine their egalitarian ethos and informality. Those with charitable status had generally taken this step for funding purposes and also because they felt it increased their credibility. However, the administrative responsibilities attached to charitable status were sometimes deemed unduly onerous. Most groups structures were somewhere in between these two extremes entailing some form of management committee and a written constitution. There was concern that formalisation could put a barrier up between members, but on the whole groups maintained their friendly, relaxed atmosphere and democratic decision making processes. All groups had somebody who, with differing levels of formality, fulfilled a leadership or coordinator s role. This often required a great deal of time, passion and commitment. The extent of collective responsibility for undertaking group tasks varied widely. In some groups there were high levels of member input but in others group coordinators found their role burdensome due to members reluctance or inability to assist with running the group. A few coordinators were nervous 4

5 about allowing too much input from members because of fears that the group s hard won reputation could be jeopardised. Eight groups were affiliated to a national organisation. The quality of relationships with national organisations varied. They were most positive when the national body was available for support but trusted the group to act independently in response to their particular local needs. Groups felt aggrieved when their freedom to act was restricted and when they were treated as a mere fund raising money-box for the parent organisation. Funding Most groups needed some funds to cover their running costs; however in some cases these costs were minimal and obtained through small member contributions. The biggest expense was for meeting premises although a number of groups, particularly in Nottingham, benefitted from reduced rents at a variety of venues. Revenue was also used for; hosting events, publicity, days out, paying for speakers, transport and administrative costs. Although some groups stated that they had simple needs and did not require much money, many were struggling for survival due to a lack of funds. There was a common fear that receipt of funding would either undermine groups ethos and independence or subject them to unacceptable levels of administration and accountability; however only three groups consequently did not apply to any external sources. The remainder had accessed revenue from a number of different bodies, including local councils, local community funding agencies, the Big Lottery and national charities. Apart from one group, who had received 250,000 for a specific building project, this ranged from a few hundred to a few thousand pounds. Funding application processes were generally seen as a big headache for which most groups needed assistance. External relationships Groups worked with practitioners from numerous organisations, including health and welfare services, schools and voluntary sector agencies. Relationships were frequently very positive. Assistance in Nottingham came from agencies such as Self Help Nottingham, Nottinghamshire Community Foundation and, in both counties but to a lesser extent, local Community and Volunteer Service offices. This included informal support and advice, help with the costs of printing and premises, and training in areas such as accounting and funding applications. For some this support was seen as crucial to a group s survival. Groups had mixed experiences of working with clinicians. Relationships with specialist nurses were usually very positive and grounded in mutual respect. A number of groups had received a positive response from GPs and consultants who, in some cases, were informing people about the group. However, other groups felt that they lacked respect and recognition from medical services. There was a particular difficulty in getting groups publicity materials displayed in GPs practices. 3.2 Expert practitioners Overview The ten practitioners came from varied backgrounds and had different types and levels of involvement with SHGs. They included representatives from: national charities with affiliated local groups, voluntary sector agencies working with community groups and SHGs, a service user network for people from Black, Asian and minority ethnic communities and community development 5

6 agencies. The practitioners tended to describe and understand the groups role and purpose in the same terms as the members. SHGs were seen as an invaluable source of support and information. Practitioners role Practitioners perceived themselves in a supporting role or as backup providing practical help with venues, publicity or in attracting new members. Some of the participants agencies also offered training, including in IT, assertiveness and funding applications. There were differing views about how best to work with SHGs. For some, being immersed in the group or having in-depth knowledge about the condition faced by members was essential. Others however felt that maintaining a certain distance was required. And it was generally believed that establishing boundaries was essential for practitioners in order to reduce the risk of dependency. Increasing group members capacity in order that they take on more responsibility for themselves was seen as key to the practitioners role. This required a balance between encouraging members to take up new roles whilst also creating a sense of security by monitoring their confidence and progress in these new positions. Representatives from national charities usually suggested groups should have a structure, although most also acknowledged that flexibility was needed so that groups could do what they as a group feel is appropriate for them. This view was shared by most of the other practitioners who felt that when flexibility was lacking serious problems could arise in the relationship between professionals and groups. The biggest deficit in groups capacity was with regards to fundraising and funding applications and their subsequent accounting procedures. Many groups were afraid to take the leap and either do this for themselves or undergo training - this fear, coupled sometimes with complacency, meant groups frequently remained dependent on practitioners in these matters. Funding derived from statutory authorities brought the additional and equally onerous burden of evaluation and monitoring. Again this was an area in which most groups lacked skills and confidence, and it was felt that the methods expected by these bodies were inappropriate for SHGs. Future challenges The practitioners were optimistic about the future of SHGs although this was tempered by concern about the effects of the current economic climate and public spending cuts. It was believed that groups would have to find new ways of working and of financing their activities. However, this could be viewed as a positive opportunity to make something out of a crisis. 4. Discussion and next steps The picture of SHGs that has emerged from stage 1 is of a spectrum of groups, of which, whilst sharing a belief in the value of mutual support and collective wisdom, each displays its own unique character and set of attributes. This suggests that the guidance developed in subsequent stages should not seek to be too prescriptive or to advocate a single model to which SHGs should be encouraged to subscribe. Instead it should attempt to ensure that both practitioners and SHGs themselves are aware of the range of available options, in terms of groups purpose, activities, funding and structure that will best suit their particular circumstances and the needs of their members. The findings from stage 1 have been used to inform the data collection strategy for next stages of the project. Stages 2 and 3 will focus more specifically on developing and drafting the guidelines for professionals working with SHGs. These will be produced mid 2012 and followed by a period of dissemination. 6

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