SearchA momentous day as EDS UK head to Downing Street
- 27 November, 2023
- EDS UK news
Susan Booth, Dr Hanna Kazkaz, Dr Emma Reinhold, Alex Atikici and Fran Heley at Downing Street
Tuesday 21 November 2023 was a momentous day for The Ehlers-Danlos Support UK. In the early afternoon we held a briefing with MP’s in Westminster on the lack of NHS services for people with hypermobile Ehlers-Danlos syndrome or hypermobility syndrome disorder in England, before handing in our #EnoughIsEnough England petition to number 10 Downing Street.
At 2pm we hosted an open MP briefing at Portcullis House, asking MP’s to ask the Health and Social Care committee to urgently review the provision of dedicated services for people with hEDS/HSD in England. The briefing was incredibly well attended with 24 MPs joining.
We asked MPs to ask the Health and Social Care Committee to urgently review the provision of services and we clarified that hEDS/HSD is the most common type of EDS affecting 1 in 500 people. We also clarified that people needed a multidisciplinary approach as there are many co-morbidities.
The EDS UK team of staff, members and medical professional at Portcullis House
We were supported by some of our Medical Advisory Panel and other health care professionals as well as a few of our members. Dr Hanna Kazkaz, Dr Emma Reinhold, EDS UK member Alex Atikici and EDS UK Chief Executive Susan Booth gave speeches and all MPs were given handouts with details of what we are asking for. MP Andrew Selous who hosted the event and is Alex’s MP, suggested some ideas for next steps in parliament which we are actively following up and will announce in due course. Being able to present real life experiences from medical professionals and patients to MP’s was key to the success of the event and we are incredibly grateful to all who gave their time.
Thank you to Andrew Selous (MP for South West Bedfordshire) for hosting the event and to the following MP’s for taking the time to come and see us to learn about the challenges our community faces:
After the briefing we made a short walk to Downing Street and a small group went to hand the petition in to number 10. It was an incredible honour to hand in the EDS UK petition box with the 28,700 signatures emblazoned on the front. We were very conscious that we were there with thousands of you all in spirit. If we could have taken everyone we would have done but we hope that we made you proud.
We must not stop now, and we will be following up with the MPs who attended and working with MP Andrew Selous on some ideas for next steps in parliament. If you contacted your MP and asked them to attend the briefing we would love to hear from you. This will be important in making progress in parliament. If you asked your MP to attend, please email membership@ehlers-danlos.org by Monday 4th December and let us know who your MP is, if they had a face to face meeting with you and include any correspondence you had with them.
And finally, a HUGE thank you to everyone. You did this. By reaching out to your MPs and getting behind the #EnoughIsEnough campaign we have been heard in Westminster. Also, we were heard this year in Holyrood and the Senedd. In Scotland and Wales, we are following up with the petitions committees there on how to take things forwards. In Northern Ireland we are working on a plan as well. Let’s keep this going, we are starting to be heard!