Physio at UCH - how to get a referal - is it necessary

[Es*]

I have a shockingly bad GP. When I tried to get a referral about my hypermobility (as a result of a friend and my osteopath thinking it may be HMS or EDS) she said that this never caused pain, fatigue or balance issues ... so, I probvably was hypermobile, but she couldn't refer me to a specialist. She wouldn't even refer me to a local rheumatologist. She often implies that it's all in my head.

Anyway, I managed to get her to privatly refer me (her letter to Prof Grhame practically said 'this ones is a hypercondriac, you tell her, she might listen'). Funnily enough, Prof G says I have HEDS! Funny that. He also wrote that it explains why my balance issues are so ongoing (I have another balance disorder, maybe two, but no one could work out why it wouldn't respond to treatment) and my pain, fatigue, IBS etc etc etc.

In the appt Prof G said I should have physio at UCH and see him ongoing. I was happy with this, I am concerned that a local physio will not have the experience of HEDS needed to treat me well, especialy in combination with other conditions.

Unfortunatly, however, Prof G didn't write this in the letter! He has suggested I am referred to him at UCH (on the NHS) and that I have physio with the local physio who he had a letter from in my GP referal. I am not sure why he changed his tune. It could have been that he hadn't read the letter previously to the appt so didn't realist I'd had a physio or that he thought it would be better as it's closer, or maybe, just maybe, he thought local would be best?! I hated that physio, though, she lied about me. She was horrible and not understanding at all. More importantly, I was discharged, and I can't see her again easily. I would prefer a UCH referal, especially as I'm moving house and it's doable from my new place, too. I feel I might have more support with other stuff (lioke orthotics etc) there, too.

Does anyone have any ideas how to get a UCH referal out of my GP? Would it be worthwhile? Should I ask the prof for a reason why he changed his tune? I just am really concerned about going to my GP and being fobbed off. AGAIN!

[Rosie]

Hi Es

How about contacting the prof and asking him? You should have details on your report so you can contact him or his secretary by letter or email, or possibly a phone number. You need to explain your concerns about being seen by your local physio, I'm sure he will understand as it happens to a lot of us. I have only had 1 session with the UCH physios (the same day I was diagnosed) but when her report came through I contacted her to corrrect something and she was more than happy to do so, they can't always get 100% right! Ongoing physio at UCH is only really practical if you live close enough.
I don't know the system, but maybe he can only refer you for (NHS) physio at UCH after he has seen you as an NHS patient? I am guessing here.
I do hope you can get this sorted

welcome again



Rosie

[Es*]

Thankyou so muchg for your reply. I think I was just feeling all frustrated about how long this is all taking, when I wrote the post.

I have just been to the GP's, but as my GP was off ill, got to see a different doctor. RESULT! He referred me back to the prof on the NHS, no problem (funny, as my GP said that was definatly impossible!). I asked about physio and the doc said that physio in london sounded like it might be best, but as the Dr couldn't refer me, he would leave it to the Prof to refer, if appropriate. So, I emailed the prof politely asking if this was possible ... and I await a response.

Finally a good referal from my GP (or not my GP, but the surgery, on the NHS). Hopefully this will be the start of good things to come.

[Rosie]

Hi Es

Sounds like good news! A different Dr can make all the difference sometimes.



Rosie

[sarahh]

Hi Es sounds like your gp had no idea and was just making things up as she went along, seems what they don't know they make up. I am so glad you got to see the Prof and finally got to the bottom of things which is good news. Glad the other gp reffered you back to the prof on the nhs and hopefully now when you see him he will refer you for phyiso in london. Local physio's I too have had problems with them not knowing how to help or not knowing what hms and treating me like any bog standard patient. I really hope you don't have to wait too long to see the prof again.

Take care

Sarah x