Commons Sense

House of Commons · Westminster Hall

Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

22 May 2024 · 7 other contributors · 5,004 words

Opened by Andrew Selous Con South West Bedfordshire

Responding minister: Andrew Stephenson

NHS

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

Read the full transcript on Parliament.uk

At a glance

Andrew Selous raised concerns about ehlers-danlos syndrome and hypermobility spectrum disorders in Westminster Hall. A government minister responded.

Key points

  • There are between 135,000 to up to 300,000 people in the UK with Ehlers-Danlos syndrome, though many cases remain undiagnosed.
  • The condition can lead to debilitating symptoms affecting multiple body systems and is often not recognized by healthcare professionals.
  • The Government acknowledged the debate's importance and pledged a meeting with campaigners to review evidence for improving diagnosis and care.

Key requests to Government

The Government should establish an NHS pathway for diagnosis and care for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders, develop NICE guidelines, implement a multidisciplinary approach to care, and provide training for healthcare professionals. These measures are necessary to address the widespread neglect of EDS.

How the debate unfolded

MPs spoke in turn to share their views and ask questions. Here's what each person said.

Opened the debate

Andrew Selous Con South West Bedfordshire

There are between 135,000 to up to 300,000 people in the UK with Ehlers-Danlos syndrome, though many cases remain undiagnosed. The condition can lead to a range of debilitating symptoms affecting multiple body systems and is often not recognized or understood by healthcare professionals. Some patients wait for decades before receiving a diagnosis, leading to significant physical disability and reduced quality of life. There is also evidence that people with EDS use hospital services twice as much and incur additional costs.

Other contributors (7)
  • Ashley Dalton Lab West Lancashire

    Mr Dalton pointed out that many patients remain undiagnosed due to a lack of awareness among medical professionals. He urged the government to increase awareness across medical services so that Ehlers-Danlos Syndrome is at least considered as an option for diagnosis.

  • Dean Russell Con Watford

    Mr Russell shared personal experiences of his wife's struggle with hypermobility Ehlers-Danlos syndrome, highlighting the difficulties in accessing appropriate care and the impact on her daily life. He emphasized the need for better identification, training, guidance, and signposting within the NHS to address this condition. Shared personal experiences related to his wife's condition, highlighting the need for better awareness and support for individuals living with Ehlers-Danlos Syndrome.

  • John Martin McDonnell Lab Hayes and Harlington

    Mr McDonnell suggested appointing a specific champion for Ehlers-Danlos Syndrome as has been done with other conditions, highlighting successful results from such focus in the past.

  • Liz Twist Lab Blaydon and Consett

    She shared stories from constituents suffering from EDS and the financial burden they face, spending Personal Independence Payments on transport, medication, and private treatments. She stressed the importance of supporting them through welfare.

  • Pauline Latham Con Mid Derbyshire

    She highlighted the complications of Ehlers-Danlos syndrome, including aortic dissection. A constituent took 30 years to receive diagnosis and her sons cannot access similar services.

  • Richard Fuller Con North Bedfordshire

    He acknowledged a constituent who, along with her family members, suffers from EDS. He expressed concern about early diagnosis and suggested that big data and AI could assist doctors in analysing health service data.

  • Sarah Dyke Lib Dem Glastonbury and Somerton

    She noted that her constituent with EDS sees different consultants each time they visit the hospital, leading to piecemeal treatment instead of a holistic approach. She proposed having a single point of contact for patients.

Government Response

Andrew Stephenson

Acknowledged the importance of the debate and thanked Andrew Selous for securing it. Highlighted ongoing efforts to improve diagnosis and care, including comprehensive toolkits for GPs and physiotherapists. Mentioned that NHS England commissions some specialist services for rarer forms of EDS but does not yet have evidence supporting secondary care services for hypermobility and pain. Pledged a meeting with campaigners and promised to review any presented evidence. Discussed the Major Conditions Strategy aimed at improving proactive, personalised, and integrated care.

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