SearchEDS UK leads first GP conference in London
- 3 December, 2024
On Tuesday 26 November we held our first ever learning event for GPs at The Reform Club in London. We had over 70 GPs register and were pleased to have an eminent faculty of speakers on the day. We were joined by Dr Emma Reinhold, Dr Ben Frankel, Dr Alan Hakim, Mr Luke Cascarini and Ms Sophie Roberts. The aim of the event was to support GPs in spotting hypermobility related conditions in primary care. Objectives included equipping GPs with the knowledge and skills to recognise and diagnose hypermobility spectrum disorder and Ehlers Danlos syndrome, especially hypermobile Ehlers Danlos syndrome; and providing an understanding of the associated clinical conditions.
The format of the day was formal presentations with interactive workshops using anonymous case studies. It was a great way to learn with the chance for the attendees to ask questions and see how they could shape their practice. All the presentations were recorded and will be hosted online soon for those unable to attend the in person event.
Dr Emma Reinhold a medically retired GP, researcher and member of our Medical Advisory Panel said “It was a privilege to witness a group of clinicians going from curious to confident over the course of an afternoon, thanks to the hard work of an amazing team led by Jill and Susan. It’s also great to see the EDS GP Toolkit still delivering value for doctors and patients 6 and a half years on from its launch.”
We were delighted to have a special guest join us, Professor Rodney Grahame a world renown leading expert in EDS and a member of our Medical Advisory Panel. He once said “No other condition in t
he history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.” It was great to have him attend and meet so many health care professionals with their new interest in this condition.
100% of people who filled in the evaluation form rated the meeting as good or excellent. Comments included appreciation for the holistic approach. One GP said “I am more confident to diagnose and I will encourage colleagues to think EDS”. 100% also agreed or strongly agreed that their knowledge of hEDS and HSD has increased and that it was applicable to their clinical practice. They also agreed or strongly agreed that the information presented was well balanced and consistently supported by a valid scientific evidence base. 92% felt confident to diagnose hEDS and HSD and understood the associated clinical conditions. 85% felt they knew when to involve secondary care experts.
Sophie Roberts a musculoskeletal podiatrist said “It was a fantastic event simplifying and demystifying the presentation and diagnosis of hEDS and HSD patients for GPs so they can lead patients on the appropriate treatment pathways to empower them to manage their symptoms and improve quality of life”
Susan Booth Chief Executive of the Ehlers Danlos Support UK said “For the EDS and HSD community in the UK this was an amazing day where we brought GPs together to increase their confidence in diagnosing and managing hEDS and HSD. We brought the voices of 14.5k+ EDS UK members to a room full of GPs. They all left with increased confidence and knowledge and were prepared to actively share that through their networks. The impact of this event has meant that many more people affected by EDS and HSD will be connected, heard, supported and have equitable access to care. We are now working on sharing the learning through our digital channels for those GPs who couldn’t make it and thinking about our next activity.”