Recommendations for an EDS specialist in London?

[Winter_night]

Hi there. Thanks for taking the time to read my post. I have recently been diagnosed with PoTs and I also have fibromyalgia and erythromelalgia. At my recent autonomics appointment my hyperflexible joints were mentioned and I was asked if I'd been assessed for hypermobile EDS. I would like to find someone specialist in London ideally who I could talk this through; my next NHS rheumatology clinic is ages away and I find the consultant very hard to talk to... I would like someone empathetic who will listen. Any recommendations would be appreciated - thanks!

[Blearyeyed]

Hi, Welcome to the forum.

If you look to the right hand side of your post page now you have a reply you will see related posts.

The top one , ' Recommendations for Hypermobility EDS specialists please ' , is a very good one as in replies one member describes their experience and how to negotiate the system and use your letter from an EDS consultant to get referrals to the right NHS departments.

There are few specialists in the NHS across the UK. There are a couple of Centre of Excellence ( CoE) EDS units in London and Sheffield which you can get referred to but you need this referral to be done by a Consultant not your GP. You could ask your Rheumatologist to write you a referral now , rather than waiting for your next appointment so the results are sent back before you next meet with them to speed up the process ( although there will be some wait on the appointment). You can do this by contacting your Rheumatologist via an email through his Secretary. If you don't have those details you can ring the hospital ask to be put through to the secretary of your Rheumatologist and ask for their email because you have a question to ask them. Or the main switch desk may be able to just give you the secretary's email .

There is the Hypermobility Centre in London which does also take NHS referrals from Consultants but access to this is also private if you can afford it, and is also useful for issues that include Autonomic issues like POTS testing as well. I'm not sure if the EDS CoE units take private patients as well , but you can get a list of EDS doctors , whom are mainly in the London area , by looking up the recommendations on the EDS UK society website , which also gives lots of useful info about the condition and self care , as well as having support groups for you to join and a helpline for advice.

[Winter_night in reply to Blearyeyed]

I’m so hugely grateful for this Blearyeyed thank you. I had no idea I could request my rheumatologist refer me across so I will certainly ask as a start.

[Blearyeyed in reply to Winter_night]

If your Autonomic appointment was with a consultant, or you have a Consultant that you see and are more comfortable talking with in that Department they can also be the ones to refer you on the NHS to the Hypermobility Centre or an EDS CoE unit. It doesn't need to be a Rheumatologist, just a Consultant working within the NHS. If it was the autonomic consultant that actually brought up the possibility of EDS in the first place , based on their clinical observations, it may well be better for them to be the ones that organise the referral anyway. They may have been resistant to do this because of cost or not realised they could do the referral. It's worth reminding them that if the referral is to a CoE it costs their department nothing , as CoE appointments are centrally funded.

You can look up the information about referrals to the CoE by looking up the links on the EDS UK site or putting NHS referral to Ehlers Danlos Centre of Excellence in an internet search , then you can scan or print off this information for the person you are asking to refer you and send it through to them on the email so they have the right links to firms and where to send them at hand. Take care , Bee

[Winter_night in reply to Blearyeyed]

Hi Bee - I wrote to my rheum this morning attaching the autonomics letter and asking that he refer me across to hypermobility/EDS specialist. My experience of the rheum is that he prefers to be the one asking the questions and leading things so I wont hold my breath but if he says no I will go back to the autonomics neuro and ask her instead... I find neuro's I've dealt with to be much easier to approach and generally more open. I wouldnt have even thought to ask autonomics until you mentioned it so big thanks again for the tip! I'm not always forward enough but Im getting better at it