Please post here for UCHL visits -

[barkingmad]

Hi folks,
I have popped onto quickly look for feedback on how you all feel things are going at UCLH........ and noticed that we need to remind you all that this thread is for dicussions on service provision at UCLH, please could any discussion on autonomic dysfunction etc be kept to appropriate threads?

I know this is a pain for you all and may seem a tad picky but we use your feedback to inform service providers of views and opinions from users, (and quite often they pop on here to look for same info) and it makes it harder when we have to trawl through lots of posts on actual symptoms etc...

sorry!
TC Donna

PS If anyone has specific feedback I would be very grateful to receive it. You dont have to post here you can email me privately on admin@hypermobility.org

[juliepops]

Hi All
I am Very as I finally got an appointment at UCL
Apparently they made a clerical error which is why I waited so long . Been told I'm not seeing prof G but another consultant rheumatologist.
Anyway nothing could be as bad as my last rheumy locally.
Julie

[sheppeyescapee]

My mum has got to a position where her pain, fatigue and other associated problems have bothered her enough that she wants to get a referral to UCL. From what we can gather she is probably an 8/9 beighton score and 2 major 2 minor for Brighton. Her ankles like mine are her main problem joints, also her hips, wrists and thumbs. She's just waiting for her blood test results then she is going to ask to be referred to UCL. She wanted to know is pins and needles in her hands and feet related to EDS?

[nemonie]

Hey Sheppey,

Pins and needles (parasthesia in proper medical terminology) in the hands and feet is often due to nerve impingement from the joints moving about too much, which we EDS-ers obviously tend to get quite a lot off. It's another thing to put on her big list of symptoms, they might want to check her for carpel tunnel syndrome or something similar when she finally gets to see the rheumy.

[star gazer]

Hi all, I spoke with Prof Grahams secretary yesterday because my sons paed was concerned that no follow up letters had arrived, that's all in hand now but she mentioned that prof G had referred My son to occupational therapy, does this happen at uclh? (she mentioned the name of the person the letter was going to but I can't remember it now) and has anyone else had ot at uclh.
thanks for any answers to this question
star gazer

p.s he broke his arm on monday so will probably need some rehab once the cast comes off anyway. first time he has felt well enough to go out for months and fell whilst in the queue for the cinema

[Fluffym]

Nemonie

Interesting about the pins and needles. I've had carpel tunnel tests with neg results. Never thought about impingement DUE TO the joint moving too much. I tend to get the tingling when I've been on the computer too long. Maybe it's because my head pokes forward when I get fatigued.

Fluffym

[juliepops]

I'm a bit confused ( doesn't take much!!)
following on from my last post I got my letter confirming my apt at UCLH. It told me the name of the consultant I'm seeing but no mention of it being a hypermobility clinic. Also when speaking to other people at my local HMS support group they all seem to have been sent a questionairre with their apt letters. Should I be concerned that I haven't or am I being paranoid? I am getting nervous as I don't know what to expect and I had such a bad experience with the rheumy I saw locally.
Has anyone got any words of wisdom? encouragement? or anything else to calm me down???!!!

thanks Julie

[barkingmad]

Hi Julie,

The HMS Clinic is heavily oversubscribed at UCLH at the moment. So the HMS Clinic have been allowed to filter some referrals out to colleagues in their own rheumatology time to reduce the waiting list. All the consultants who are seeing HMS Cinic patients do have knowledge of HMS and are supervised by the HMS Team. They are also able to seek additional support/supervision/ consultation with the HMS Team for any complex cases that they may come across.

The only other reason that this could have happened is if when the HMS Team received your referral they triaged it as not meeting HMS Clinic criteria...which can happen if your GP or referring Dr did not write an adequate referral letter. You could ring the secretary of the consultant you are down to see and double check that they are aware that you were seeking a referral to the HMS Team and that you are in the overspill so to speak and take it from there. You may need to wait a couple of days whilst the referral is checked.

I didnt know UCLH had started sending questionnaires out but I am aware that they are seeking patient views on the services they are running in the HMS Clinic. This is to make sure that the service is meeting everyones needs etc.

If you all remember, we asked for more updates on how you think the HMS Clinic is doing at UCLH as we were asked for feedback. It would help if people could write on this thread their views on how the system is working and whether something could be done better etc.

TC Donna

[juliepops]

Thanks Donna that has put my mind at rest!!

[Lou]

Crikey, I came to this thread because it's been 9 days since my appt and no letter, but I see I probably have another 4-6 weeks wait yet!!! I saw a different rheumy (not Prof G) who also knows about/has done research into EDS and he was so totally lovely - friendly, sympathetic, interested, answered questions, examined me, looked when I pointed things out and actually considered them rather than becoming impatient. He then dictated letters to my GP, the UCHL EDS-specialist physio and the UCHL EDS-aware gastrointestinal doc in front of me! Was brilliant, so I actually know exactly what the letters say! I wish I could recommend this guy but apparently I can't! He discharged me at the end explaining they didn't have resources to follow up on everyone, but said that if I feel worse or become concerned etc I should get a referral back to him.

So can any lovely people please let me know approx how many weeks they waited to see the UCHL physio or the gastrointestinal doc? I'm desperate to start my physio! I'm very lucky in that I don't dislocate but my muscles are very very weak and sore and I believe if I can strengthen them my health will really improve.

Thanks guys,

Lou

[Lou]

I have news!!! When I got home from work yesterday I had my letter from the physio at UCHL asking me to contact them to make an appointment, then today I received my copy of the letter to my GP from the Consultant Rheumy, and a letter from GP confirming they had referred me to Dept of Gastroenterology at UCHL - 10 days after my appt/diagnosis!! Very very pleased, and also relieved I didn't get Prof Grahame after all, as he sounds mega busy and stressed at the moment. Things are looking up for me at last! Let's hope the wait for the gastro isn't too long

[Purplesheep]

I just got my report through from my appointment with Prof. Grahame two months ago, and it's just as disappoining as the appointment itself was.

A lot of things have been left out, important things like my history of fainting and extreme intolerance to heat. Other stuff is inaccurate and some completely made up, such as TMJ problems and poor skin healing. I actually think he just copied and pasted common symptoms of H-EDS into the letter, on the off-chance that I might have them He constantly refers to HMS, only one mention that it might be the same as H-EDS, which won't be very helpful in educating doctors. He's also decided that my mother is also hypermobile; how he came to that conclusion, I'll never know, since neither of my parents are bendy at all and I clearly said that in the appointment.

I'm quite annoyed as he left out the fact that my current orthotics are useless and while he said he would make sure I get a referral some custom-made ones, there is no mention of any of this at all in the letter. That was the only vaguely productive thing that actually came out of the appointment. Oh well, I guess I'll have to keep on spraining my ankles. Worst of all, he's created a lot of work for me by asking my GP to refer me for physio! I am already seeing a physio and this was discussed for at least 10 minutes in the appointment, he even wrote down my physio's name so he could send him a copy of the report! Now I have to go see my GP just to explain that I don't need another referral, because Prof. Grahame didn't actually bother listening to me.

The letter concludes by saying that he would be happy to see me again if the need arises. No thanks, if I need some to make me feel like I'm wasting their time, not listen to me and getlots of things wrong in the subsequent report, I can get that from my local rheumie too

[Es*]

Oh. My. Word. Just had to reschedule my Prof G annual review, which was supposed to be Mid July, because of something totally unavoidable. The next appointment they could offer is at the end of March 2012! There's busy and there's busy...

[Stone]

Hi all, I spoke with Prof Grahams secretary yesterday because my sons paed was concerned that no follow up letters had arrived, that's all in hand now but she mentioned that prof G had referred My son to occupational therapy, does this happen at uclh? (she mentioned the name of the person the letter was going to but I can't remember it now) and has anyone else had ot at uclh.
thanks for any answers to this question
star gazer

If it's hand OT then it's with the lovely hand therapists who work in the basement (therapies and rehabilitation department). Nice people, know their splinting and very keen to get everything sorted

Had my six month followup in the hypermobility clinic today, this was supposed to be six months after my last appointment which was last August! Busy is an understatement 8O I got told to overbook (waiting to hear about scan results) as otherwise the waiting list is months and months. You will get seen eventually but you do have to be patient with them. It's NHNN, not UCHL, but I had my autonomic testing in December and my appointment to discuss the results is in August so it's not just them!

Stone

[madmum]

I have an appointment on 30th august. Can anyone tell me what to expect?