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Motion · S6M-14548 · 18 Sep 2024

New Care Pathways for People Living with Ehlers-Danlos Syndromes

Lodged by Michael Marra (Scottish Labour) Members' Business Motion 30 supporters

The motion

That the Parliament understands that Ehlers-Danlos syndromes (EDSs) are part of the inherited connective tissue disorders, and are mainly characterised by joint hypermobility, skin hyperextensibility and tissue fragility; further understands that these syndromes are classified into 13 subtypes and present great clinical and genetic heterogeneity; believes that the most common is the hypermobile Ehlers-Danlos syndrome (hEDS), the diagnosis of which remains clinical; further believes that there is currently no pathway of care for adults living with hEDS or hypermobility spectrum disorder (HSD) in Scotland or the UK, and understands that people living with these conditions, including in the North East Scotland region, report feeling dismissed by healthcare professionals, with time to diagnosis reportedly currently averaging two decades; recognises the work of volunteers and campaigners at The Ehlers-Danlos Support UK, which was set up in 1987 to support, advise and inform those living with Ehlers-Danlos syndromes, and notes the encouragement for the Scottish Government and parliamentarians to engage fully with the issue, and to work with the NHS, researchers and patient representatives to deliver the care pathways that people living with Ehlers-Danlos syndromes need.

Supporters (30)

Source: the Scottish Parliament motions and amendments record.