Getting A Diagnosis Of EDS Through The NHS

[Details]

I did not know about EDS until last year when a consultant Gynaecologist told me I 'almost certainly have it'. When I looked up all the associated signs/symptoms I had them all overwhelmingly. I have spent the majority of my life on a roundabout of hospital appointments. Never getting answers. My life has been ruined. Apart from my clubbed foot failing and bruises everywhere I have no issue with hyper mobility.

When I told my GP what the gynaecologist said he mocked me and didn't believe me but eventually sent me to a Genetic Medicine Unit who dispatched me after only 10 mins, a wholly inadequate consultation and a refusal of any further appointments.

My GP had tried to send me to a Rheumatologist first but referral had been rejected. He had been told he had to send me genetic medicine first who had seen me but didn't want to know and got rid of me quickly after 10 mins.

I see a lot of posts on here telling people to 'change GP'. This would seem to be counter productive as it seems most GPS seem to behave in a similar way when it comes to EDS. There is no guarantee you will find one anymore helpful and changing GPS creates lots of other potential difficulties as well. It is poosble new GP could be even worse!

It is not clear what the pathway is for getting a diagnosis. It seems the standard route is referring people to a rheumatologist which is recognised as not being particularly helpful and concentrating only on hypermobility aspects. Yet when I went to the the genetic clinic they did exactly same. Asked me if I could do 'gynamastics or party tricks'. When I said 'no' they discharged me. Totally uninterested in other symptoms.

When I rang EDS helpline they were also very dismissive and apart from telling me to get referred to a private rheumatologist in London there was no difference in their approach.

What are other options for being dianosed when the pathway seems to be 'see a rhemotologist'. Where else might you get a diagnosis. I don't think many GP's would be willing to do this despite what 'checklist or toolkit' you bring with you. Also genetic medicine clinics seem to be as dismissive.

I am struggling to see what options there are for dianosis in the NHS where someone takes notice of all the issues you experience and makes a connection.

[honeybug]

Hi Details

I’m sooo sorry about your being dismissed by so many doctors.

Here in the USA 🇺🇸 our medical care system is totally different.

As a patient who has been dismissed countless times in my 68 years I know the frustration and concern very well.

Since your gynecologist said you have EDS would it be possible to talk to him explain your dilemma and get him to help you see someone a Rheumatologist who can diagnose such things???

It’s just a thought because I hate to see you go endlessly on the roundabout.

Best wishes for your EDS appointment success. Take care.

I just prayed for you to get your appointment dear.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Details in reply to honeybug]

That's really nice of you. I hadn't planned to see the gynaecologist again. I had gone with prolapse but he doesn't seem to be doing anything about it. Your right I could do with seeing him again. Trouble is its potluck who I get to see. Will bear it in mind. Thanks for your good wishes.

[honeybug in reply to Details]

I sure hope you do get to the same gynecologist and get that much needed referral.

Abundant blessings dear.

EJ xx

[cyberbarn]

GPs can now diagnose EDS. The RCGP has developed the toolkit to do it. Take the url with you to your next GP appointment, also read it yourself and tick off the boxes. rcgp.org.uk/clinical-and-re...

[VickiOliver in reply to cyberbarn]

I could also do with this link but the link given isn’t working 😌

[cyberbarn in reply to VickiOliver]

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

It worked okay for me, maybe it got split between two lines for you?

[Details in reply to cyberbarn]

I've opened it OK. I did take it to GP but they said they didn't know anything about EDS and didn't want to use it. They said they had already sent me to genetic clinic which I was only seen for 10 mins and asked if I do 'party tricks' then discharged.

[cyberbarn in reply to Details]

I think your next step should be to contact PALS and your local Healthwatch and tell them that the GPs are refusing to use the RCGP toolkit. Healthwatch might not be able to do anything straight away, but if they get more than one person telling them that GPs are refusing to use it, they will be able to take action. PALS will probably be handled by your Clinical Commissioning Group, (CCG) but if you ring your surgery and ask to speak to the practice manager, then ask them which PALS office you should contact about this, not only should they tell you, they might also ask you what is going on and put pressure on the GPs to use the toolkit to stop you from making a complain to the CCG.