Social care plays an integral role in most of our lives. It’s the support that enables us to live independent lives, make decisions about how we go about our day and achieve what we want out of life. Yet, we know that it can often be difficult to navigate and be a source of distress rather than support. In this blog post we wanted to tell you a bit more about our campaign, why we are doing it, and share opportunities to become involved.
The Social Care Campaign. Why now?
To illustrate why we have launched our social care campaign, we asked various members of our community to share their experiences of social care. First, Sam, our Research and Campaigns Officer, described navigating social care as ‘an incredibly challenging and emotionally draining experience’.
He also alluded to, ‘A lack of transparency in social care decision-making (that) can also create this feeling of exclusion and powerlessness.’
Janet, whose son has DMD, echoed Sam’s feeling about the opaqueness of social care when she described
‘…the inability to get an audience with the right people. Who are these nameless, faceless people on ‘the panel’ who hold our lives in their hands?’
‘Even now, ‘the panel’ from the Local Authority make decisions that can be life changing, yet we are not allowed to meet with them to understand their process, or advocate to them. The lack of transparency is shocking as are the assumptions that they somehow understand my son’s life well enough to make these major decisions without his input.’
As David, a long-term advocate for the neuromuscular community and researcher highlights,
‘The triumph of process over outcomes or anything meaningful or useful has characterised so much of what we found then – and since – when we have gone to look at the role social care is playing in the lives of people living with neuromuscular conditions. It has always seemed to me that the foregrounding of medical issues and needs has overshadowed people’s needs, wants and rights to get support with being alive and living interesting and flourishing lives.’
As a community, we are not alone in sharing these experiences of social care. A wide range of people and organisations have spoke of problems associated with access, quality of care, workforce pay and conditions, disjointed care and postcode lotteries relating to access and performance.
Therefore, there is an urgent need for reform, one recognised by the current Labour Government who commissioned Baroness Casey in April 2025 to perform an independent review of adult social care (DHSC, 2025). This is where our campaign comes in, we believe that as an organisation we are a real authority on this topic and have something to add to the conversation about social care reform.
Our vision is to be solution-focused, to stop merely describing problems, and to work collaboratively with other organisations, including universities and local authorities to design solutions to social care for adults with neuromuscular conditions. We agree with Crowther (2025) who writes:
“The problem with nearly every think tank when it comes to adult social care is just deep, depressing conservatism, lack of imagination and a fundamental lack of focus and interest in the lives of people who actually have reason to draw on support, what matters to them and their wellbeing.” Crowther (2025)
In the rest of this blog, we talk about what we have done during our campaign so far, what we are doing going forward, and how you can get involved.
Understanding community experiences. Our survey.
Recently, we asked members of the neuromuscular community to share their experiences of social care via a survey. Thank you to all those who participated, each response has provided valuable insight into the topics and areas in social care where we need to direct our campaign efforts.
Key headline findings of the survey show that recruiting and retaining PAs remains a challenging experience with low pay and lack of interest in being a PA. Rates of pay are not uniform with some employers just being able to afford minimum wage (£12.21) whilst others can afford to pay £24 per hour. Another significant finding included the fact that 90% of survey participants stated that they would like to see more transparency in regard to how decisions are made about their care packages. We will be sharing a full report highlighting the survey findings in the coming weeks.
Making connections. The Casey Commission
Back in September, Sam, our research and campaigns officer attended the Social Care Future gathering in Manchester. He managed to meet with, and arrange a meeting, with one of the representatives of the Casey Commission. Since then, Jon our CEO has attended an evidence session to represent the neuromuscular community. We hope that in sustaining a relationship with the commission the findings of our campaign can
be shared at a policy level.
Finding solutions
The roots of the next part of our campaign started a few years ago, where our research officer, Dr Suzanne Glover, worked with Dr George Peat from Northumbria University and others to co-write a proposal for research funding. This proposal was successful, and funding began in April this year for a two-year project aimed at co-designing solutions to common social care problems faced by the community.
This project will put adults with neuromuscular conditions diagnosed in childhood at the heart of conversations with local authority representatives and allied health professionals (e.g. neuromuscular care advisors) to discuss solutions to common
social care challenges. For more information about the project, visit this page.
Opportunities to be involved
Ultimately, we want to work with you to develop solutions, as shown by the Pathfinders social care survey. If you want to continue to be part of the conversation, please contact Sam at Sam@pathfindersalliance.org.uk