Contribution
It is a pleasure to serve with you in the Chair, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this debate, which I have been asked by a number of constituents to attend. I would like to talk specifically about what it is like to live with Ehlers-Danlos syndrome in Cornwall, a rural and coastal area with the sea on three sides and only one acute hospital, which is in my constituency.
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. One told me that because of the lack of occupational therapists in Cornwall, he can have an OT appointment only every six months. Another said that they simply could not get treatment by a physio equipped to deal with EDS.
That lack of service leads patients in Cornwall to rely on their GPs, who may have patchy knowledge of the condition and are not necessarily equipped to deal with such complex issues. The lack of provision for EDS patients in Cornwall has even led some to move or consider moving up-country.
Our peripherality does not help with diagnosis times either, which is the second thing I want to touch on. Many constituents have written to me describing years of misdiagnosis and missed opportunities. One woman waited 10 years from the start of her symptoms and was finally diagnosed in London. A constituent with CCI was diagnosed by surgeons as far away as Spain and New York. A third constituent was diagnosed at 48 after many years of unexplained symptoms. Echoing what we heard from my hon. Friend the Member for Cannock Chase, she said:
“Over the years it took to get my diagnosis I felt that I was viewed as a hypochondriac or overanxious patient. The combination of multiple GP visits and not being believed had a…detrimental effect on my wellbeing and mental health. Even after diagnosis I continue to be frustrated by trying to engage with a…system that doesn’t work for people with this condition”.
A key issue highlighted was disjointed care. As EDS is a multi-system condition, every time a new body system develops an issue, the patient needs a new referral. As there is no care pathway for EDS and patients generally do not have access to a specialist, who could consider their symptoms as a whole and provide a joined-up treatment plan, that means multiple referrals, extra appointments, more travelling and more time off work—and therefore, more patients seeking private care.
My constituent Carley, who has EDS and CCI, had to fundraise and take out loans for her private surgery to relieve the pressure in her brain that was forcing the back of her cerebellum to herniate down into her spinal canal. She had been experiencing severe and progressive neurological symptoms, but was unable to access appropriate assessment and treatment through current NHS pathways. In her words:
“I developed intense pain in my head and neck that would make me physically sick, trouble standing, walking, swallowing, breathing, I was losing my vision. I was choking on food…as it was getting stuck in my throat due to my swallow reflex being affected. When I tried to lay down my skull would slide backward, and I would stop breathing. It was terrifying. I was getting intermittent body paralysis and many more equally terrifying symptoms. My bladder and bowels were not working properly & in most cases this condition then leads on to seizures. Nobody knew what it was or how to help me.”
I want to show a picture of the operation Carley had to secure her spine, because it is so shocking.
It would help all of my constituents considerably if the Department looked at developing a clear, accessible and appropriate pathway for patients. Does the Minister accept that patients with EDS and suspected CCI are in reality unable to access appropriate assessment or treatment through current NHS pathways? Will the Department commit to developing a clear, accessible and clinically appropriate pathway for those patients?