Commons Sense

House of Commons · Ministers' Questions

Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder

Tuesday 5 December 2023 · 2 questions

Summarised by AI from the official record, so it can contain mistakes.

Read the full transcript on Parliament.uk

At a glance

Answered 0 Partly answered 1 Not answered 0

Key points

  • Barry Sheerman questioned the provision of health services for people with Ehlers-Danlos syndromes and hypermobility spectrum disorder.
  • The Minister acknowledged the disabling nature of these conditions and the role of integrated care boards in commissioning general rheumatology services.
  • Sheerman expressed dissatisfaction with the current approach, suggesting it falls short of addressing the needs of those affected by these conditions.

Topics (select to filter)

Questions & Answers

Q1 Barry Sheerman Lab
NHS
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.

Question

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.

Answer from Andrew Stephenson

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.

Partly answered

Not addressed: The specific ask for a review of the provision was not directly addressed.

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Q2 Barry Sheerman Lab
NHS
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.

Question

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?

Answer from Andrew Stephenson

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.

Not addressed: The specific ask about training, research, and capacity was not addressed; instead, the answer focused on general improvements without providing specifics.

How: With Respect, The Hon. Gentleman Is As Wrong As Usual.

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