EDS UK recently contributed evidence from our 2026 Members Survey to a collaborative policy discussion led by the Department of Health and Social Care (DHSC) and the Department for Work and Pensions (DWP) Work and Health Directorate.
The request came through a cross-sector working group bringing together charities and organisations from across the musculoskeletal (MSK) community, including ARMA, Arthritis UK and NRAS, to help inform future policy thinking around work, health and outcomes for people living with MSK conditions.
The group was particularly interested in evidence relating to children and young people, including those at risk of becoming NEET (not in education, employment or training), and what types of interventions may improve both health and employment outcomes over time.
As the voice of the EDS and HSD community in the UK, we were pleased to contribute insights directly from our members’ lived experiences.
What our members told us
Our 2026 Members Survey received over 1,000 responses, including 61 respondents aged 18–25 and 229 members responding on behalf of a child or young person under 18.
The findings highlighted the significant barriers many people with EDS and HSD continue to face in education, healthcare, employment and everyday life.
Children and young people need better support
Of the 229 respondents answering questions about children and young people:
- Only 9% felt there was “good” support available locally
- Just 4% felt local support was “excellent”
- 54% said there was no adequate local support available
Families identified several areas that could make a meaningful difference for children and young people living with EDS and HSD:
- Providing information and training for schools and educational providers 66%
- Dedicated support for children and young people 63%
- Online peer support forums for young people 53%
- Parent support forums 41%
- Activity days 33%
- Mentoring opportunities 32%
The survey also showed the wider impact these conditions can have on young people’s wellbeing and participation:
- Emotional wellbeing issues 51%
- Lack of access to services and support 49%
- Mobility problems 42%
- Mental health difficulties 42%
- Social isolation 34%
The impact on work and financial wellbeing
The survey also provided important insight into the relationship between health and employment outcomes for people living with EDS and HSD.
Across all respondents:
- 93% said EDS or HSD symptoms had affected their ability to work
- 39% had to give up work completely
- 24% had reduced their working hours
- 30% remained in work only because reasonable adjustments had been made
- 11% were not currently working but wanted to work
- 4% said they had never been able to work
Many respondents described long delays to diagnosis, difficulty accessing knowledgeable healthcare professionals, lack of joined-up care, inaccessible workplaces, and challenges obtaining appropriate support or adjustments.
The survey also found that 85% of respondents reported their household was under some degree of financial strain because of EDS or HSD.
What could help “turn the dial”?
While our survey is not a formal evaluation study, it provides powerful lived-experience evidence about the types of interventions people believe could improve long-term health, participation and work outcomes.
The themes shared with the DHSC/DWP working group included:
- Earlier access to condition-informed physiotherapy and occupational therapy
- Better training and awareness for schools, colleges and employers
- Peer support and mentoring opportunities
- Flexible online and local support networks
- Advocacy and navigation support for healthcare and education systems
- Improved diagnostic pathways and coordinated multidisciplinary care
- Employment support focused on reasonable adjustments and sustainable participation
Why this matters
For many people with EDS and HSD, the barriers they face are not caused solely by their condition, but by delayed diagnosis, fragmented care, lack of awareness, and systems that are not designed to support fluctuating, lifelong and often invisible conditions.
We are grateful to have been invited to contribute to this important cross-sector discussion and to ensure that the experiences of the EDS and HSD community are represented within wider national conversations about MSK health, work and wellbeing.
Policy change takes time, but lived experience evidence matters and every member who completed our survey helped contribute to these conversations.