From lived experience to Westminster: making every voice matter

14 April, 2026

Through more than 3,500 e-actions reaching 98% of all MPs, our community ensured that people living with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and associated conditions could no longer be ignored. Our collective effort as a community, and collaboration as one of the founder members of the Overlapping Illness Alliance, led directly into parliamentary drop-ins in November 2025 and the Westminster Hall debate on 26 March 2026.

In that moment, our vision was realised:

Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care.

And Parliament listened.

What Parliament heard

Opening the debate, Josh Newbury MP spoke about people with EDS and craniocervical instability (CCI) feeling “unseen” and “not even believed” within the healthcare system.

MPs from across the UK echoed what our community has been telling us for years:

patients passed from service to service
years waiting for diagnosis
symptoms dismissed or misunderstood
families left to navigate complex care alone
people forced to pay privately for treatment

One MP described the financial impact on families as being “crushed” by the need to seek private care.

In response, the Minister acknowledged:

care for EDS patients is often fragmented
there is a need for better coordination and clearer pathways
concerns raised would be shared with NHS England
further work is needed on guidance, referral routes and research

However, she also confirmed that there is currently no national diagnostic or treatment pathway for craniocervical instability (CCI).

What our community told us

The debate in Westminster reflected the lived experiences shared by our members in the run-up to the parliamentary drop-in and beyond. Those stories are powerful and consistent.

Diagnosis delayed, sometimes for decades

People told us about symptoms starting in childhood — joint instability, pain, fatigue, gastrointestinal issues — but never being recognised as part of a wider condition. Instead, symptoms were treated in isolation. It can take 10 to 23 years to receive a diagnosis of EDS or HSD, one of the longest delays in medicine. Many members said that when they were finally diagnosed, clinicians described it as “obvious”.

“Every consultant I have seen since has commented on how obvious it is I have it.”

A system that doesn’t see the whole person

EDS and HSD are complex, multi-system conditions. They can affect joints, pain, fatigue, digestion, cardiovascular function, immune response and more — often alongside PoTS, ME/CFS, long covid, mast cell activation and other overlapping conditions. Yet the NHS is not structured to manage complexity well.

“How can this work in a 10-minute GP appointment covering one issue? Conditions like this need a holistic view — and that’s not possible.”

Our MP briefing made this clear: without integrated, cross-specialty care, patients will continue to fall through the gaps.

Disbelief and dismissal

Many members described not being believed.

“I was labelled a hypochondriac… those words followed me for years.”
“They said they couldn’t see anything wrong — but I was in severe pain.”

Invisible illness remains poorly understood not only in healthcare, but in wider systems. One family described a devastating experience where a young woman with EDS faced a fraud investigation because she “looked fine”.

Paying for survival

A recurring theme was the cost of private care.

“My survival is something I had to buy.”

Members described:

spending thousands on diagnosis and treatment
travelling abroad for care
funding physiotherapy, cardiology, surgery and specialist input privately

This reflects what MPs raised in Parliament, that access to care is becoming a “wealth lottery”.

Families fighting to be heard

EDS and HSD often run in families. Many people sought diagnosis not just for themselves, but so their children would be taken seriously.

“I got my diagnosis so my children could be taken seriously by their GP.”

Parents told us they are navigating healthcare, education and benefits systems simultaneously often becoming full-time advocates for their families.

What we took to Parliament

Our briefing to MPs set out the reality clearly:

the most common type of EDS, hEDS/HSD is not rare, affecting an estimated 1–4% of the population
diagnosis is complex and often delayed
healthcare professionals lack confidence and support
pathways are unclear or absent
patients are left without coordinated care

But we didn’t just highlight problems, we brought solutions.

We are calling for:

integration of EDS, HSD and overlapping conditions into NHS policy and service specifications
multidisciplinary, joined-up care
better training for healthcare professionals
clear diagnostic and referral pathways
a national MDT approach for complex cases such as CCI

Our leadership — your voices

This work would not have been possible without our community. More than 3,500 of you took action, contacting MPs across the UK. We know how hard it is to keep fighting, especially when you are unwell, exhausted, or navigating complex care. Every email. Every story. Every action mattered. While we can’t respond to everyone individually, please know this, your voice has been heard and it has made a difference.

What happens next

Awareness in Parliament is growing. Engagement with government is increasing. But now we move forward together.

In this next phase of our campaign we are already:

working with the Department of Health and Social Care
collaborating across the devolved nations
supporting the development of pathways and service models
advocating for integration of EDS, HSD and overlapping conditions into policy and practice

We are moving from “Enough is Enough” — raising awareness — to “Make it Matter” — driving real, lasting change.

Make it Matter

People with EDS, HSD and associated conditions should not have to:

wait decades for diagnosis
fight to be believed
navigate fragmented systems alone
or pay privately for care they need

Together, we will keep pushing until change happens.

Because every voice matters and now, we make it matter.

What happens next: Make May Matter

Awareness has grown. Parliament is listening. But now we move into the next phase, turning that momentum into meaningful change.

This May, we are evolving our campaign from “Make it Matter” into “Make May Matter” — a focused month of action to build on everything our community has achieved so far.

Across the UK, we will continue to drive change in each nation:

England – Following the Westminster Hall debate and ministerial engagement, we are continuing conversations with the Department of Health and Social Care to ensure commitments translate into practical improvements in pathways, training and access to care.
Scotland and Wales – With newly elected MSPs and MSs, we will be launching new e-actions, ensuring that awareness and advocacy continue at devolved level and that progress on pathways and service development is accelerated.
Northern Ireland – We will be announcing new funding from the Department of Health for EDS UK to begin health care professional engagement, marking an important step forward in recognising and supporting the needs of the EDS and HSD community.

This coordinated, UK-wide approach reflects who we are and what we stand for. Make May Matter is about ensuring that, every new representative understands EDS and HSD, every commitment made is followed through, every voice continues to count.

A message to our community

We know how much it takes to keep speaking up — especially when you are managing complex, life-changing conditions.

Thank you.

Thank you for every email sent.
Every story shared.
Every action taken.

We may not be able to respond to everyone individually, but we are making sure that every single voice is heard where it matters most.