Advice on accessing NHS help after pr... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Advice on accessing NHS help after private diagnosis

m1ms profile image
m1ms

Hi,

I have just received my diagnosis of Hypermobile EDS with Marfanoid phenotype via a private consultation with Dr Mittal. I had previously been diagnosed by an NHS Rheumatologist with Joint Hypermobility 3 years ago but the Rheumy point blank refused to consider EDS as I "wasn't in a wheelchair", and refused to believe that my pain, fatigue, migraines and digestive issues were connected to my hypermobility. The experience was so scarring that I didn't seek help from any medical profession for 3 years despite worsening symptoms and is the reason why I decided to go down the private route last week - I just didn't feel strong enough to go through that again!

One of Dr Mittal's recommendations was that I see Dr Qasim Aziz for my gastro and bowel issues, my question is what is my route to get the referral to Dr Aziz when I already have the diagnosis via a private rheumy. From my research, certain services like those at RNOH and UCLH have to be referred by the local NHS rheumatologist but as I have circumvented that by going to a private rheumy does that mean my path to be referred is blocked? I really need physio as well but can't afford the private ones that were recommended and I'm tired of injuring myself seeing the general physios who don't understand my body.

Would really appreciate any advice as I'm really worried that I have shot myself in the foot by going the private route.

Hope everyone is staying as well as they can.

1 Reply

How is your relationship with your GP? It might be an idea to discuss this with them, along side the RCGP EDS toolkit. Now that you have a private diagnosis it might be easier for your GP to coordinate your care.

rcgp.org.uk/clinical-and-re...

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