Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
Debate between Liz Twist and Andrew Selous(7 months ago)
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Liz Twist (Blaydon) (Lab)
Constituents have been in touch with me about this. A member of my staff has been in touch with me as well. They tell me just how difficult life is with EDS. As one person put it,
“these are horrendous afflictions to live with, and some people can work and live with it, but some can’t. Any Personal Independence Payments that are received are spent on transport to and from appointments, medications and private treatments just to make life bearable.”
Does the hon. Gentleman agree that we must do everything we can not only to improve standards of healthcare, but to make sure that the welfare system can continue to support them?
Andrew Selous
I agree with the hon. Lady, and I have experience of assisting constituents through the PIP process, which is tortuous for those with EDS so I am very grateful to her for putting that important point on the record.
The 13th type of EDS is not rare and cannot be tested for, which is really significant. Recent studies have shown that the diagnosed prevalence of the most common type can be as high as one in 227 people, although most are not diagnosed. Those with the most common type are twice as likely to use hospital services, and there is evidence that the cost of secondary care for them is an additional 29%. This places a significant burden on the NHS, so if we understood and could diagnose it earlier, we could take some of the strain off hospitals. That is another important reason why we must make progress.