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Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder

Volume 742: debated on Tuesday 5 December 2023

8. If she will review the provision of health services for people living with (a) Ehlers-Danlos syndromes and (b) hypermobility spectrum disorder. (900474)

We recognise that body-wide symptoms associated with Ehlers-Danlos syndrome and hypermobility spectrum disorder can be disabling and can affect all aspects of life. General rheumatology services, which support people with Ehlers-Danlos syndrome and hypermobility spectrum disorder, are locally commissioned by integrated care boards, which are best placed to make decisions according to local need. The major conditions strategy will focus on six groups of conditions, including musculoskeletal disorders such as these syndromes and disorders.

That is all very well, but I do not think that will convince my constituents or the one in 500 people who suffer from that awful disease. This wonderful talented group of people on the Treasury Bench obviously inhabit an alternate universe. My GP said that these days there is no training or research, and that we do not have the capacity to look into these things. People with EDS have to be assessed by uptrained GPs, but they are not there. Our GP and medical services are on their knees. When will the Minister wake up to that fact?

With respect, the hon. Gentleman is as wrong as usual. NHS England is taking forward work to improve the ways in which services for rare diseases are commissioned, putting patients’ voices at the centre of service delivery and ensuring co-ordinated access to specialist care, treatment, drugs, social care, mental health and special educational support. We will continue to work to improve services in this area.