Written Question on Ehlers-Danlos Syndrome

Written Questions are submitted by MPs or Lords to receive information from a Department.


See more on: "Ehlers-Danlos Syndrome"
Date Title Questioner
1 May 2019, 4:03 p.m. Holly Lynch MP (Labour - Halifax) Holly Lynch MP (Labour - Halifax)

Question to the Department of Health and Social Care

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to reduce the waiting time for patients with Ehlers–Danlos syndromes to see a specialist.

Answer (Caroline Dinenage)

Services for patients with Ehlers–Danlos syndromes (EDS) are provided at a local and national level. NHS England commissions services for patients, adults and children, with EDS from specialist rheumatology centres. A Complex EDS service for adults and children is being delivered at two centres in England, London North West University Healthcare Trust and Sheffield Children’s NHS Foundation Trust. The two expert centres ensure that a correct diagnosis of EDS has been made and investigate complex cases of EDS. Some patients may also be seen in more local rheumatology services, which are commissioned by clinical commissioning groups.

From October 2018, the National Genomic Test Directory has been in place and specifies the genomic tests that will be commissioned directly by NHS England and the patients who will be eligible to access this testing for diagnostic purposes. EDS with a likely monogenic cause is included in the National Test Directory.


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