Bath Assessment cancelled, only EDSh Dr. leaves

[minxabroad]

I posted awhile ago asking if anyone had been to Bath for an assessment for EDsh as I had been referred there and was hopeful to know if it was indeed Edsh I have been suffering with.

I received a very vague letter today telling me I have been removed from the waiting list. After calling around to find someone who could explain I finally got in touch with the Rheum. Outpatients appt's. who said that a Dr.Jenkinson, who is the only Dr. dealing with EDSh at Bath, is moving away and from now on EDSh will be treated by the physio team just the same as fibromyalgia as it is not an inflammatory condition.

I asked her if they were able to fully assess patients, as it is an assessment I am after but she was unable to say.

The letter states that my GP has been notified and I can ask the GP to re-refer me however the woman I spoke to says that is a mistake and is probably part of a generic letter because there will be no one else (in Bath) to be referred to.

Now this means another GP appt just to find out what is going on. Have I been automatically moved to an appt with the Bath physio team? And If the physios are a regular physio team the same as we have where I live, then there is no point in going to Bath anyway. Feeling pretty disappointed... Not sure where to go from here.

[Ladyuponthelake]

Morning, ever so sorry to hear your disappointing news. It's just exasperating! I hope you get more information from your GP.

I've had my appointment come in for Dr Hakim. It's not until April...but it's a step forward.

Let us know how you get on 💟

[TigerTea]

I'm sorry you're struggling to get proper help Minx, the nhs really aren't all singing from the same hymn sheet with EDS, which makes our journey so much harder. Like Ladyuponthelake I had to dig deep & pay to see Dr Hakim, it was a long wait and a lot of money for me, but well worth it. You can self refer without your GP, and provide a 'timeline' of symptoms & illnesses going back to childhood, but if they Are helpful (unlike mine) any tests etc they can provide will help him. Getting that diagnoss is such a relief, no-one can claim it's in your head anymore.

My daughter got referred outside her area by her GP, EDS specialists/units are like hen's teeth, and I believe you can ask to be referred anywhere, so there's no reason why yours can't do the same-do a bit of research and if you are able to travel you should go where is best for you. xx

[Jojo91]

Oh no it's so frustrating and disappointing. I hope you get some answers soon.

[Kelw1982]

I’m sorry. My husband has had years of this. Most doctors now have heard of it but don’t know what it actually involves.

I would assume that u have to start back at theG.P. My husband has been waiting 2 years for an appointment to assess his deterioration since his diagnosis 12 years ago.

People fear the unknown so they push it away. Make it someone else’s problem. We need to raise awareness but shouldn’t Doctors help or the government.?

[jpain in reply to Kelw1982]

Part of problem seems to be that GPs believe that they DO know about the condition but they have just picked out a few possible symptoms or characteristics and remember that. So they don't feel the need to learn more about it because in their mind they don't need do. Very difficult to tell a Dr that what they are saying is untrue.

I had one person dismiss eds because the skin on my hand wasn't stretchy enough but he had already displayed his lack of knowledge of hEDS by showing he was unaware there is a difference between hypermobility and hypermobility syndrome/hEDS. In his mind i only needed to do vigorous exercise to sort it out as look at all these hypermobile athletes doing great things...not sure how they explain people who have hypermobilejoints and do no exercise whatsoevr but don't have any issues with pain or mobility?

He did separately look in my mouth and say that crowded teeth and a high palate could be a sign of a connective tissue disorder...I didn' respond with 'what like EDS you mean?'

And my GP dismissed it because I didn't have a heart murmur.

Makes it very difficult

[minxabroad in reply to jpain]

That is spot on. They do their one or two "tests" and that's it. I printed off a page from a website that lists the things to check (the criteria) and gave it to my GP. He didn't read it until 2 months later and only because I ended up writing a letter of complaint. After he read it he said he agreed I should see someone and referred me to Bath...

[minxabroad]

Thank you everyone for your kind words. Based on far more than this situation I can say that the NHS is really failing many people. They seem to be excellent at emergency care but chronic issues, long term issues and non fatal issues are left to the wayside. It is awful really because those issues affect a person's quality of life so much.

I do understand with the hypermobility type EDs that it is quite different from from the others in that it seems to not affect the organs however when you have joints coming out of place and others always threatening to come out of place, when you have constant pain from what they say is tendonitis all over my body, is that a way to leave a person? Is there no one who will investigate these awful issues and tell me what it is? Is it EDs? Is it something else?

I went to Rheumatology at our local hospital and mentioned Eds to them. They asked to see my elbows bend and my thumb to my forearm. Although I have very bad pain in the elbows and a feeling of near misses with dislocations they said they do not look to be "hyperextended" and my thumbs do not reach my forearms easily although they do get close. They ruled me out right away because of that but I have read that there is so much ore that needs to be taken into consideration before a diagnosis can/can't be made.

Those two things don't rule EDs out do they? Not according to what I have read but even if it were the case, should they not investigate to find out whay a person has been diagnosed with tendonitis repeatedly and continuously for 2 years? Or maybe find out why the dislocations and the "near misses"? They see I am alive and that I can feed myself and do most things so they leave me to it but they don't understand how badly the quality of my life has been affected.

Sorry for the ramble....

[jpain]

Can really sympathise with you.

I was so relieved when I discovered the Dr I was due to see last July at rheumatology dept of hospital in my home city was a rare expert in hEDS and I might get a proper diagnosis but when I went she was on leave and I got someone else who like most rheumatology drs didn't know much about the condition and didn't seem to pick up on what I was telling her about family history and other symptoms. So I only got a vague diagnosis of hypermobility that the physios I was referred to don't seem to take seriously. She did ask for me to come back in 3 months but when the appt came through it was for next March so 8 months later and during this wait my condition has definitely not improved and probably got worse. And every medical appt you do have in meantime you feel like you are being disbelieved or looked at like you are exaggerating or not trying hard enough or something. You hear from the experts and sufferers that hypermobility syndrome and hEDS are basically the same in terms of the effect on the joints but most in the medical profession don'

[jpain in reply to jpain]

Accidently submitted reply to early again! Was saying that diagnosis of eds seems to allow you to be taken a bit more seriously (although of course I know there is still ignorance of this too-I'm not downplaying that)

Hope you manage to get to see someone who knows about EDS. Not sure what the answer is but stay strong.

[minxabroad in reply to jpain]

jpain Thank you for sharing your story. You are so right. I bring up the "hypermobile" thing at doctors appt's in case whatever I am there for is related but no one wants to know. As you say, "hypermobile" is so vague and no one takes it seriously. They surely would if they have a joint dislocate repeatedly! I just wish someone knew of an hEDs expert in the NHS. If anyone does know of someone who is very experienced in the area please do let me know.

[jpain in reply to minxabroad]

The doctor I'm waiting to see is Dr Ho at Manchester royal infirmary so long way from you. But other than her I've only heard Bath mentioned (no good now!) And London - but I think they are all private ones there

[Hamondsen]

You need a genetasist to diagnose EDS effectively. I got reffered onto rhematologist from a genetasist. Physio can't diagnose EDS or hypermobility that I am aware.

Ask Gp for a referral to genetasist.

Good luck

[bimaloy30]

You have to remember that when you phone them you are just talking to a 'phone jockey', no offence to anyone who does this for the DWP.

(Tele-sales are another story).

They can only tell you what they can see on their screen, they don't know what is going on with your claim until it's released on the system.

And they don't have any training on the benefits rules so can't give out any advice (and are told not to).