Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder 2023-12-05
2023-12-05
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Response quality
Questions & Answers
Q1
Partial Answer
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Context
The MP is concerned about the provision of health services for individuals with Ehlers-Danlos syndromes and hypermobility spectrum disorder, conditions that can be disabling and affect all aspects of life. General rheumatology services are locally commissioned by integrated care boards.
If she will review the provision of health services for people living with (a) Ehlers-Danlos syndromes and (b) hypermobility spectrum disorder. These conditions can be disabling, affecting all aspects of life, and general rheumatology services are locally commissioned by integrated care boards.
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.
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Assessment & feedback
The specific ask for a review of the provision was not directly addressed.
Response accuracy
Q2
Partial Answer
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Context
The MP is concerned about the lack of training, research, and capacity in medical services to address conditions such as Ehlers-Danlos syndromes and hypermobility spectrum disorder. The GP mentioned that there is no training or research available for these conditions.
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.
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Assessment & feedback
The specific ask about training, research, and capacity was not addressed; instead, the answer focused on general improvements without providing specifics.
With Respect, The Hon. Gentleman Is As Wrong As Usual.
Response accuracy