Reviewing social care for adults with neuromuscular conditions.

Overview:

When it comes to support, it’s medical needs first, then social care afterwards. At least, that’s the message often received by those who attempt to interact with a system that should in fact be offering independence, choice and control.

But what evidence currently exists about the current state of social care for young adults with neuromuscular conditions? This Research Unravelled article by Pathfinders provides an accessible summary of the Scoping Review by Peat et al., 2025 published in the Journal of Long-Term Care.

Despite adult social care being a topic well discussed within the neuromuscular community, finding research that supports the views of our members is difficult to find. In part, this is because lots of research focuses on the health aspects of neuromuscular conditions, ignoring the vital role social care should play in supporting meaningful and fulfilling lives.
Although many young adults with neuromuscular conditions do receive some support, the system of adult social care is fraught with challenges related to receiving and maintaining appropriate care: especially care that meets the needs/wishes of the individual. With ‘Social Care and Young Adults with Neuromuscular Conditions Diagnosed in Childhood: A Co-Produced Review’, Dr George Peat (a long-time supporter of Pathfinders) and Dr Suzanne Glover (Research Manager) et al. bring together the first comprehensive review of literature on this subject, with the goal of improving understanding and social care access.

Some of the researchers involved in this review visiting Belfast, Northern Ireland.

From left to right, David Abbott, Suzanne Glover and George Peat.

How was the review done?

This review aimed to gather evidence about social care around young adults with neuromuscular conditions, identify gaps in the evidence, and understand how, and in what ways adult social care is discussed in existing evidence. Importantly, the review is co-produced (created by different groups working together) by researchers working with a group of five young people with neuromuscular conditions.

They performed an extensive academic search looking for empirical evidence (not opinion pieces or policy documents), and found over 3,000 references from 25 international studies. Then, the researchers analysed how social care was discussed in all of these texts. After much vetting and discussion, the researchers found that information around social care for young adults varied hugely across quality and availability. 

Researchers broke down social care into the following components:

• Informal care (care provided by relatives and other non-professionals)
• Personal assistance (externally sourced care)
• Independence (being able to express choice and control) 
• Interaction with the social care system (obtaining support and information)
• Opportunities to socialise
• Relationships and intimacy (platonic, romantic and sexual) 
• Adaptations and equipment to support everyday living

What were the main findings in the review?

Two main findings are important to raise.

Firstly, the quality and availability of adult social care is considerably lacking. In many ways, this did not come as a surprise to us nor would it likely to the reader. However, it is an important finding in providing the foundation for change and development. 

Secondly, the research practice that led to the findings we reviewed overwhelmingly adopted oppressive (strict or inflexible) approaches where the opportunity for the equitable (fair based on actual need) involvement of adults with neuromuscular conditions diagnosed in childhood was limited. In other words, the ways in which these studies carried out and reported their research often lacked the voice of the neuromuscular community.

It is these two key review findings that have since set the agenda for further collaborative and fairer research into adult social care. In partnership with Pathfinders and University of Northumbria, our current NIHR funded project seeks to challenge commonly cited tensions relating to the provision and delivery of adult social care, using research methods that ‘shake-up’ traditional ways of research that can often seem tokenistic (like a tick-box exercise!).
Social care systems differed between countries, but it was routinely reported that acquiring social care became harder when the young adult with a neuromuscular condition became an adult, and entered adult social services. Within the community, this process is commonly called ‘transition’.

A further theme related to the role of social care in supporting socialising and relationships/intimacy. The review found young adults frequently report experiencing loneliness, isolation and difficulty establishing and maintaining relationships due to inadequate and poorly funded social care. Some found these difficulties were reduced by the use of good adaptations and equipment, but many reported a lack of funding, and needing to spend their own money on necessary items. 

(Image shows powerchair football in play. Photo credit to Inertia Creative)

This review has value to the community because it validates communities like ours being at the heart of social care reform, informed by evidence that we have genuine engagement in. It is a text which outlines which parts of social care are most important to young adults with neuromuscular conditions, and how they are being let down.

By involving young adults with neuromuscular conditions as co-researchers in this review, the researchers were able to focus on the issues which really matter to the community. However, they admit there wasn’t a lot of evidence. This is why we seek to move the agenda towards research informed, guided, and delivered by the neuromuscular community. The research team expressed their desire to challenge a dominant ‘health narrative’, where social care is side-lined in favour of medical research. They want to highlight social care as a crucial component of life for people with neuromuscular conditions.

(Image shows Pathfinders’ freelance research officer Benjamin James. Photo credit to Inertia Creative)

What conclusions can be drawn from the review?

In conclusion, researchers found that across a variety of studies the availability, quality, and discussion of social care is poor. However, this can be changed by working with young adults who have a neuromuscular condition, to create further co-produced research. You can read more about Pathfinders’ research here!

The research was partly funded by the NIHR School for Social Care Research. The views expressed here are those of the author(s) and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care

This Research Unravelled was brought to you by Quinn Clark, Suzanne Glover, Benjamin James and George Peat. 

To see our video summary – click here
To see the full article – click here!