Some may question the value of investing in mental health research, but it can lead to developments in practice.
By Vanessa Pinfold, co-founder and research director at the McPin Foundation. (www.mcpin.org)
Research is often an interesting discipline for those involved, but for others it can seem like a luxury society can’t really afford. Spending on mental health research is relatively low compared to the scale of the issue, and most comes from the state (Medical Research Council, 2010). Statistics suggest for every £1 spent by the government on mental health research, the public gives just 0.3p. The equivalent public donation for cancer is £2.75 (MQ: Transforming Mental Health, 2014).
These figures raise two important questions: Firstly, why invest in mental health? Because we need better services, treatments and prevention strategies to increase wellbeing and help all citizens to fulfil their potential. The government, despite austerity, seems to agree (Department of Health, 2015).
Secondly, why invest in mental health research? Here, policy commitments are harder to find, although mental health research was prioritised through the National Institute of Health Research (NIHR) clinical research networks 2003-2014. But research can take a long time to complete. It is often resource intensive, and thus expensive to deliver; the NIHR provide grants of £2 million over five years for applied programmes of research. It does not always lead us towards better treatments, service configurations or understanding of mind-body health challenges. And even when positive results do emerge they are rarely implemented at scale so that everyone benefits.
We set up the McPin Foundation as a charity with the aim of improving the quality of mental health research delivered in England, and to ensure the involvement of people with lived experience of mental health problems within research was championed and developed (INVOLVE, 2012). We believe research has a role in improving mental health for communities everywhere. Research can improve understanding of mental health problems and ways to support people, assess the impact of treatments or services and provide information to help people make informed decisions.
For example, we carried out research on personal wellbeing networks, in partnership with Plymouth University and others (Pinfold et al, 2015). We did this project because we felt that a personal wellbeing network approach might be a useful way to support recovery-focused mental health practices.
We thought it might help people identify ways to improve their wellbeing. People with long-term mental health needs are often viewed as isolated and inactive, but is this the case? Are there untapped resources in their personal networks that they can be supported to access in order to address a range of challenges, including poor physical health, a sense of social isolation, stigma and gaps in service provision?
Understanding how organisations linked up to support wellbeing, whether practitioners felt they had a role in supporting their clients to manage or make new social connections, and how individuals used resources in their own networks to support wellbeing were themes we were keen to explore. We had the opportunity to do so in a 30-month study funded by the NIHR working in a London Borough and a rural area of the Southwest.
As with all our studies, lived experienced played not just a consultative role but helped us design and interpret the research. We had a patient and public involvement group with six members. This strategy was particularly useful for piloting the wellbeing mapping process, refining interview schedules used with practitioners, and reviewing study findings for relevance to people with mental health problems.
We interviewed 150 people to map their personal wellbeing networks and identified great heterogeneity. Although some people were isolated and inactive, many living with long-term mental health needs were very socially connected. This was reflected in the social network sizes we found – ranging from five to 64 relationships. Mapping social networks in mental health populations is not new, but we expanded the idea to create a wellbeing network, which included the places people connected to and the activities they engaged in to support their wellbeing. Across the group 1,449 connections to places outside of the home were mapped and 958 activities.
We also identified three network ‘types’: diverse and active networks, family and stable networks, formal and sparse networks. The latter fits the stereotype of isolation and inactivity; people had social networks dominated by professional contacts and fewer place and activities connections.
However, it became obvious from our qualitative interviews that these networks were not static and in all networks, regardless of ‘type’, we identified potential for change. This is important in terms of recovery and person-led decision making around how people might like to make changes in their networks, and the sorts of support they might require to take action. Even those with relatively ‘diverse and active’ networks reported lower wellbeing than the general population and some required support to manage difficult or stressful relationships.
Our 41 qualitative follow-up interviews looked to understand how people managed their recovery and wellbeing through these connections, how they developed their networks and the impact these had on their wellbeing. We were able to listen to people’s stories and reach beyond labels of ‘long-term mental health problems’ or ‘severe mental illness’ to understand how they managed their wellbeing through their interests and connections to people and places.
“I paint… I’ve got to the stage where I think I can honestly say I am an artist. Paintings are getting good enough, now. And, um, I just went on holiday with a group of friends and, um, it was fabulous. I shed a lot of my illness there,” SUSW26.
This focus explored the challenges people faced to recovery, including managing mental health problems, impact of stigma, feelings of loneliness and isolation. We also learned about the value of work, friendship and stability – covering areas such as finances, housing and mental health – for recovery.
“It is easy to isolate. See, this is why I do my martial arts. This is why I do, you know… go to mass on a Sunday. It’s a… it’s… go to the supermarket every night, rather than buy your shopping for a week. It’s to get you out of it [the house],” SUL29.
The mapping process was structured and took time. We were aware of the methodological challenges of social network research, and thus piloted the tool prior to use to check it was not too burdensome and was easily understood. The interviews ranged from 45 to 150 minutes depending on the size of each person’s network, as we documented and explored each connection to people, places and activities that impacted on wellbeing.
The benefits of this approach were that people provided a picture of the interconnected social world they inhabited, allowing them to reflect on any gaps, opportunities, strengths and risks to their wellbeing in their networks. Social network mapping collects data on the structure of the personal network and we extended this to places and activities; how are connections in a network linked?
Doing so opened up conversations in follow-up interviews about the ways in which people managed their mental health, for example, managing the impact of stigma by keeping different parts of their networks apart.
People described how certain places opened up whole new networks for them while others acted as barriers to recovery because, for example, they felt unsafe when they were in them. Meaningful activities provided people with purpose and identity, and the network maps also highlighted the potential for these to help them become more socially included and increase their sense of belonging in the community.
Our study concluded with suggestions about how mental health services might integrate wellbeing network mapping into routine practice. The process of carrying out the research and writing the final report led the research team to consider whether this approach might be useful in practice, as well as being a research tool. Might taking a wellbeing network approach make a difference for how services are delivered and service users experience care to achieve better outcomes? We held two dissemination events to start these conversations with practitioners and service users. We also produced a summary of the process and began to talk to NHS trusts about piloting personal wellbeing mapping (Pinfold & Sweet, 2015).
Many research studies end with dissemination events, peer review papers and website summaries of the findings. We were fortunate that conversations within our London study site led us to a Whole Systems Integrated Care (WSIC) Programme steering group that was co-producing a new model of care for people with long-term mental health needs in one local community.
They were interested in wellbeing mapping and over six months we brought together a working group of mental health practitioners and service users to co-design an integrated model of care, which the clinical commissioning group has agreed to fund. Called the Hounslow Wellbeing Network, it will be a membership network developed by and for local people. Part of its remit will be to provide partners to work with individual members one-to-one to map their wellbeing networks and identify goals to support their recovery. Our research study is leading to a practical development to improve wellbeing among people with long-term mental health needs, and an evaluation will track its impact.
So, why invest in mental health and mental health research? We believe research can lead to evidence-informed changes to practice, prioritised by mental health service users. We can learn how best to build resilience within individuals and communities, and respond appropriately to people in distress. We plan to continue our work on personal wellbeing networks by developing a wellbeing mapping toolkit, and scoping the development of an online mapping tool.
This project was funded by the NIHR within its Health Service and Delivery Research (HS&DR) programme (project number 09/1801/1069). The views and opinions expressed are the author’s and do not necessarily reflect those of the NIHR HS&DR programme. We would like to thank the researchers and participants within the Community Health Networks study and the working group for the WSIC programme Wellbeing Networks project.
Medical Research Council (2010) Review of mental health research: Report of the strategy review group. http://www.mrc.ac.uk/newsevents/publications/review-of-mental-health-research/
MQ: Transforming Mental Health (2015) UK mental health research funding. London: MQ.
Department of health (2015) Achieving better access to mental health services by 2020. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/361648/mental-health-access.pdf
INVOLVE (2012) Briefing notes for researchers: involving the public in NHS, public health and social care research. INVOLVE: Eastleigh.
Pinfold V, Sweet D, Porter I, Quinn C, Byng R, Griffiths C, et al (2015) Improving community health networks for people with severe mental illness: a case study investigation. Health Service Delivery Research 3(5).
Pinfold V & Sweet D (2015) Wellbeing networks and asset mapping: Useful tools for recovery focused mental health practice? London: McPin Foundation.