EDS failings in the NHS highlighted in parliamentary debate

An impassioned parliamentary debate has shone a spotlight on a group of “not rare”, just “rarely diagnosed”, yet life-threatening chronic, genetic illnesses. However, despite poignant pleas for concrete action, the government has offered little more than warm words to the long ignored patient communities at the centre of the debate.

EDS and CCI debate takes place in parliament

On Thursday 26 March, a cross-party group of MPs turned out to Westminster Hall to call on the government to address the abysmal lack of NHS diagnosis and medical care services for people living with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), craniocervical and atlantoaxial instabilities (CCI and AAI).

The Ehlers-Danlos syndromes (EDS) are a group of 13 complex genetic tissue disorders. These conditions affect the entire body, often leaving people in daily pain, exhaustion, and isolation. The hypermobility spectrum disorders (HSD) are connective tissue disorders whose features overlap with the most common type of EDS, hypermobile EDS.

CCI and AAI involve excessive mobility at certain junctions in the neck. This can result in restricted blood flow, compression, and damage to nerves in the neck.

For the first time, parliamentarians spanning the political spectrum brought the lack of recognition for this severe and sometimes life-threatening assemblage of conditions into focus. Surprisingly, even Reform’s Lee Anderson took to the floor. Of course, there was a jarring disconnect in an MP who has vociferously punched down on disabled people speaking at a debate on chronic illness. Nevertheless, Anderson made the time to turn up for his constituents – including one whose story he amplified during the debate.

And of course, that striking contradiction isn’t solely the preserve of Reform. Plenty of speakers from other parties will have voted for the government’s benefit cuts. However, for a good hour and half, MPs refreshingly centred the lived realities of their chronically ill and disabled constituents.

The intersections between EDS and CCI

Labour MP Josh Newbury spearheaded the debate. The Crannock Chase MP emphasised how he brought the debate to draw attention to the intersection between EDS and CCI specifically.

He opened it with the story of his 31-year constituent Connor, who lives with both EDS and CCI, explaining that:

Some people living with EDS experience chronic joint dislocations, severe and persistent pain, and significant neurological complications. One of those complications in cases like Connor’s is CCI, whereby the skull no longer sits safely on the spine, placing pressure on the brain stem and spinal cord.

Recounting Connor’s words, Newbury detailed how:

He says that his head is quite literally falling off his body. Chillingly, that is not something that is picked up on a scan but not felt; rather, Connor feels his head shifting around dangerously every day, with all the pain that goes with that. He is also acutely aware that his symptoms continue to worsen.

Newbury hit quickly on this point that the NHS lacks necessary diagnostic equipment – specifically, upright MRI scanners:

in EDS, the instability comes from ligament laxity and is often positional, so that when someone is upright, the head is not adequately supported by the neck. That is often not visible when patients are lying flat in a standard MRI scanner, so their scans might appear normal despite ongoing neurological symptoms.

Yet gallingly, as the Canary’s Steve Topple recently highlighted:

senior practitioners advised the-then health secretary Jeremy Hunt in 2013 that upright MRI scanners were desperately needed in the NHS. He ignored them.

A postcode lottery

Many MPs drove home that care for EDS is also an unreliable postcode lottery. Labour MP Patricia Ferguson underscored research from Edinburgh University revealing that EDS patients in Scotland:

can wait up to 20 years for diagnosis

Fellow Labour MP Jayne Kirkham detailed the paucity in medical services in Cornwall:

One constituent described moving from Kent to Cornwall a few years ago and finding that the services for patients with EDS in Cornwall were “virtually non-existent”. They were initially able to access care at the dysautonomia clinic in Derriford in Devon, but that has since closed with no successor. That has meant that my constituent has spent nearly £1,000 since December on appointments and travel to see private consultants. Many constituents told me that physiotherapy has helped them, but they have experienced long waits and found that there is a shortage of professionals experienced in the condition in the duchy.

Meanwhile, DUP politician Jim Shannon put EDS and CCI diagnosis and care in the context of Northern Ireland’s lack of “detailed prevalence data”.

As it currently stands, the NHS has commissioned just two specialist diagnostic services for EDS in Sheffield and London.

No EDS-focused services for CCI patients

In CCI and AAI, the situation is even worse. Newbury said his constituent Connor has been having seizures and difficulty swallowing and breathing in “recent days”. In the process of making enquiries on his behalf, he relayed that he has:

been told that there is currently no established or commissioned NHS service for investigation, multidisciplinary discussion or surgery for CCI in patients with hypermobile EDS.

Multiple MPs spoke to the fact that the NHS simply doesn’t offer CCI surgery EDS patients need when it becomes quite literally life-threatening. As a result, it has forced patients to make expensive trips abroad for treatment. Many people living with CCI have to fundraise for this because they simply can’t afford the astronomical costs.

And even when patients pay-out for exorbitant air ambulances and private care abroad, Newbury pointed out there’s:

no aftercare, no consistent access to specialist imaging reviews and no co-ordinated rehab; many people are refused any of the care that would normally follow complex neurosurgery.

Psychologisation and harm: a history of misogynistic misdiagnosis

The debate highlighted how this gaping hole in diagnostic and care pathways often leads to clinicians gaslighting patients.

At the sharp end of this, clinicians all too often accuse patients of fabricating their illness, as Newbury brought attention to:

Many people have told me that they have been diagnosed with Munchausen syndrome, so they are not just dismissed but told that their condition is fictitious.

The psychologisation of a chronic, physiological conditions will be familiar to many in the EDS community and beyond. Clinicians have long treated EDS patients in a parallel fashion to myalgic encephalomyelitis (ME) patients – a commonly comorbid disease.

2025 research found that doctors had misdiagnosed 94.4% of EDS patients with psychiatric disorders. The study reviewed misdiagnosis across 429 patients.This included 67% who clinicians had diagnosed with ‘conversion disorder’. Most people will know this psychosomatic condition by its colloquial name steeped in misogynistic history: hysteria. Of course, this is no surprise given that EDS, like ME, occurs in women more often than men.

This shared history of medical harm is all the more reason why the NHS also needs to stop siloing care.

Labour MP Liz Twist highlighted this failure to join up specialisms in the context of the often multiple conditions patients live with:

EDS and HSD do not exist in a vacuum. Many patients find that the condition overlaps with other conditions, such as postural tachycardia syndrome, mast cell activation syndrome, myalgic encephalomyelitis, chronic fatigue syndrome and gut issues. Those overlapping conditions have an exponential impact on patients who are just trying to manage their everyday life. Under the current system, patients are bounced between different and disjointed secondary care specialties that do not communicate or understand the full breadth of the issue, having been forced to leave primary care practitioners who do not have the support they need to manage these complex patients.

Acknowledging much, committing to very little

Ultimately however, it was evident in the responding minister’s replies that the political will to tackle the dire lack of diagnosis and care, still isn’t there. Under-secretary for the Department for Health and Social Care (DHSC) Sharon Hodgson addressed constituents who’d contacted their MPs, stating:

I want those individuals to know that I hear them, and that I recognise the challenges they face and the uncertainty and distress that many describe.

Largely though, she went through the motions of listening, without actually hearing what they called for.

Dismissing the dangers many face and the surgical care some will need that has forced patients to seek care abroad, she said:

NHS England continues to strengthen clinically led pathways for people with hypermobility-related disorders, with an emphasis on non-surgical management, co-ordinated physiotherapy, and pain management and rehabilitation, as is consistent with the best available evidence.

On National Institute for Health and Care Excellence (NICE) guidelines, she stopped shy of agreeing to commission them, committing only to:

asking the NICE prioritisation board… if it will look at the Wales pathways that she suggested when it considers updating NICE guidance.

Of course, that might be useful if NICE actually had any guidelines on them to update in the first place.

The fact, as Hodgson herself acknowledged, CCI is not even “recognised as a distinct NHS diagnosis” got a:

we will look further into that.

Yet even this wasn’t a commitment to address this, but merely to:

improve pathway consistency by strengthening the existing framework

Whatever that actually means.

Hodgson made no firm promise to make even a strategy, let alone take concrete steps towards joined-up care. Repeatedly, she fell back only on the NHS’s 10-year plan. But critics have consistently branded this a wishlist, without funding and detail to make it reality. And speaking of under-resourced and unserious wishlists, Hodgson made reference to the pitiful research funding commitment in the ME Delivery Plan. The government evidently isn’t planning to put its hands in its pockets for more research funding into EDS or CCI either.

Hope alone isn’t enough, but the government couldn’t even give that

Overall, Newbury and the cross-party MPs present made heartfelt appeals on behalf of their constituents living with these devastating conditions.

MPs recognised their responsibility to ensure EDS and CCI patients across the country were made to feel seen and heard. And in sharing the stories of their constituents, they did just that.

They echoed EDS Support UK’s calls for genuine diagnostic and care pathways. And crucially, as Labour MP John McDonnell made abundantly clear – that means the government actually resourcing all this.

At one point, Newbury noted that “hope” was the “key word” of the debate, because it is:

something that so many people with the conditions do not have at the moment.

As a result, he poignantly argued that:

That is what we absolutely need to give them.

However, Newbury and other MPs realised that patients can’t simply live on that ‘hope’ alone. They need tangible action. But as ever for those living with under-recognised chronic health conditions – the government and NHS appear to be moving at a glacial pace.