Andrew Selous holds hEDS and HSD debate in Westminster for EDS UK

• 
• 23 May, 2024


• 
• EDS UK news

We were delighted with the opportunity to represent the EDS UK community in Westminster yesterday, in a debate led by Andrew Selous MP. It was validating to hear so many powerful testimonies from MPs from their constituents, which echoed the stories we hear through our Adviceline and support groups, including Dean Russell MP who spoke on behalf of his wife.

It is almost like a vile torment for those who have it. I have seen my wife in absolute agony from doing the simplest of tasks

Dean Russell MP

The debate went well with the voices of many people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) being heard in Parliament. The Minister for Health and Secondary Care responded to four asks we put forward.

1. A pathway for NHS diagnosis and care for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in England.
2. NICE guidelines for Ehlers-Danlos syndromes and hypermobility spectrum disorders.
3. A coordinated, multidisciplinary approach to diagnosis and care for people with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders and their associated co-morbidities in England.
4. Support and training for healthcare professionals to deliver this.

The Minister offered us the opportunity to have a conversation with them and NHS England about next steps. This is a great leap forward for the EDS and HSD community.

You have helped to make this happen by reaching out to your MPs. We had over 100 responses from those who got involved in the campaign. We look forward to building on the momentum we have created together.

A huge thank you to Andrew Selous MP for spearheading this, and Alex Atkici his constituent for sharing her story and getting Andrew involved.

We still need your support. Please make sure you join as a free member if you are not one already. If you would like to donate to enable us to continue to effect change like this you can do so here.

The debate was recorded and you can watch it here and a full transcript can be viewed here.