For the International Day of Disabled Persons, Hannah Tweed reflects on partnership working and peer research.
In 2018, the ALLIANCE and Self Directed Support Scotland (SDSS) began discussing the possibility of a joint research project, to provide evidence about people’s experiences of social care. By early 2019 we had started work on My Support My Choice: People’s Experiences of Self-directed Support and Social Care in Scotland, and we have since published a national report, thematic reports on the experiences of seldom heard from groups, and a range of local reports. At time of writing, My Support My Choice is the largest direct consultation with self-selecting respondents who access or have attempted to access SDS in Scotland.
Following two and a half years, with some significant interruptions (including parental leave, new jobs, and COVID-19, to name but a few…), the project is now wrapping up. Considering the project lifespan, two things stand out: the input of our peer researchers, and the usefulness (and challenges) of partnership working.
In the opening months of the project, My Support My Choice recruited a team of peer researchers who self-identified as disabled people. These members of the team were essential in refining the research questions, designing the interview structure and survey, and in interviewing people across Scotland. Dr Dianne Theakestone (Research Officer at SDSS) and I were the lead researchers and carried out much of the fieldwork for the project – but two people do not a research team make, especially when attempting to assess people’s experiences across the length and breadth of Scotland. So, firstly: thanks, again, to all of the team who contributed their expertise and time.
More reflectively, while My Support My Choice would not have been possible, or as robust, without the input of our peer researcher colleagues, co-production research is seldom quick. It takes longer to recruit individual citizens than to commission independent contractors; and the breadth of expertise they offer requires, in turn, more significant changes to project design and implementation than might otherwise be the case. Then, too, the reality of public transport and social care in Scotland meant that many parts of the country were harder for us to arrange interviews with our team, because of access issues. All these factors were – and remain – challenges to co-produced research with disabled people and people living with long term conditions.
In recent months, there have been welcome statements and commitments from Scottish Government about the value of lived experience and co-produced work. My reflections from My Support My Choice would highlight the vital importance of co-production, alongside a warning that it cannot happen at the pace often expected within Government and civil service norms. Put bluntly; good quality co-production, like trust, takes time.
The second item I mentioned as key to the project was partnership working. In 2017, both SDSS and the ALLIANCE had published small-scale reports into people’s experiences of Self-directed Support. The ALLIANCE’s membership spans a breadth of health and social care organisations across Scotland; SDSS has excellent contacts with organisations specialising in supporting people who access – or want to access – Self-directed Support. In entering a partnership working agreement, we were able to build on both our initial research findings and maximise our potential reach.
As such, we were able to hear about more people’s experiences than we would otherwise, enabling better quality research and intersectional analysis. Furthermore, by taking forward a shared project we reduced the potential burden of asking people with lived experience to repeat their stories and experiences unnecessarily, across separate projects – with all the encompassing emotional and physical energy that can entail.
That’s not to say that partnership working isn’t without its challenges; as with peer research, agreement involving more parties generally takes longer (although I am satisfied that the project benefited from those discussions). Communicating with external partners, such as local authorities and HSCPs, required clear summaries and internal communication to ensure we were all kept in the loop with progress – from the dozens of emails exchanged with each of our external partners to work out agreements on GDPR, to the joys of franking and distributing postal surveys. Finally, I had to face up early to the fact that if I turned up to meetings as a project representative without Dianne, I would be met with disappointment and complaint, because Merlin – Dianne’s guide dog, and the clear star of the show – wasn’t present. It’s hard to compete with a sociable black Labrador.
Meeting my colleague Mark at SDSS this week to discuss the final stages of this shared work, we reflected that in many ways it is sad to see the end of the project. Equally, we have been left with a robust body of evidence and detail on people’s experiences, which can valuably inform policy and practice, and has been widely shared during local feedback sessions. That evidence is particularly important in the context of the proposed National Care Service, in highlighting the strengths and weaknesses of the current system, and the case for change – and as an example of the importance and strengths of co-produced partnership work.
We really hope that the work of both partner organisations, the peer researchers and those who shared their lived experience will continue to help shape the future of social care within Scotland and improve the experiences of disabled people.
Thanks, again, to everyone who has been involved in My Support My Choice.
To find out more about My Support, My Choice and to read the reports, visit: https://www.alliance-scotland.org.uk/health-and-social-care-integration/self-directed-support/msmc/.