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<p>Information on patient outcomes of those diagnosed with Ehlers-Danlos Syndrome
(EDS) in London and Greater Manchester is not held centrally by the Department. EDS
falls within specialised services managed by NHS England.</p><p> </p><p> </p><p> </p><p>The
UK Strategy for Rare Diseases sets out the Government’s on-going commitment to ensuring
that patients with rare diseases, including EDS, have access to high quality services.
The Strategy is discussed regularly with health bodies including NHS England. The
national specialised service for atypical or complex cases aims to reduce times to
diagnosis and reduce the number of hospital appointments required to achieve a specific
diagnosis.</p><p> </p><p> </p><p> </p><p>Information about the average time from diagnosis
to referral for specialist treatment is not available centrally. Patients suspected
of having EDS may be assessed and diagnosed in a wide range of settings. These include
United Kingdom regional clinical genetics clinics and various other secondary and
tertiary speciality clinics.</p><p> </p><p> </p><p> </p>
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