Please post here for UCHL visits -

[Stone]

If it's your first appointment then for me it was a couple of A4 sheets to fill in in the waiting room (circling symptoms you have, agree/disagree with the following statements type stuff) and then an hour's appointment - about half and half taking verbal history and physical examination, they asked what I had particular problems with and what I felt needed management. Then about 5-10 mins at the end while they compiled a huge list of referrals to all different people - podiatry, neurology, physio, hand physio/OT, pain management clinic, autonomic clinic...etc etc!

It's definitely worth taking a list of, say, top five problems you have, top five things you'd like to get out of it, what needs addressing first, top 5 questions...as otherwise it's quite a long time with quite high information density and you're bound to forget things. I know I did!

Best of luck

Stone

[laracomps]

See, other than a referral to the pain management course (which i have yet to receive any information about, anyone else know how long it takes to get a letter etc? I saw the rheumy at the end of jan...)


I wish I'd had a referral to others at UCHL, e.g. podiatry and physio definitely, but I was told that my local ones would do nothing differently to them there. I do beg to differ, but hey.

I also wish I'd received a referral to the autonomic clinic, but this was not offered to me either.

Perhaps this is because I was not seen at the hypermobility clinic and by a general rheumy?

[Purplesheep]

I was seen at the Hypermobility Clinic and did not get a single referral anywhere, either to UCHL or locally. Neither was I asked about any of the specific problems that I would like help with to manage. I think it depends on how 'bad' they perceive your HMS to be, whether you already have a diagnosis (I was asked "Why are you even here?" as I already had an HMS diagnosis), and maybe it's just down to luck as to how the consultant is feeling that day.

Good luck for everyone who is going for an appointment soon

[laracomps]

Ah Purplesheep, you and I are in the same boat there then. I was too questioned why I was there as I was diagnosed with HEDS years ago. It's a shame that we all seem to have had such different treatment.

I was promised at the very least a phone call from Prof G as a follow up as I didn't see him at UCHL but in the end did not even receive that.

I do think you are correct about how 'bad' the HMS is, or how bad it is 'deemed' to be. Unfortunately as I have hidden the pain and injuries the whole of my life, it is often not apparent at all to anyone who doesn't know me inside and out, so I would imagine that I seem 'ok' despite walking with a stick etc.

There are certain joints etc that are getting worse, subluxing daily etc, problems that I want to discuss, but when it comes down to it, my GP doesn't know the answers and has no idea who to refer me on to if that makes sense, so I feel disappointed and "let down" by the NHS to not have a follow up, or at least a care plan to take away with me.

I think the thing I've found hardest throughout all of this is feeling 'dumped' after dianosis - until recently on here/in a leaflet or such, even *after* my appointment in January, I was still not aware that the main point of care for my HEDS is my GP. No one has ever actually told me that, despite asking that question.

And in terms of the whole "nothing can be done" statement, I still would argue otherwise. For instance, preventing my current condition from deteriorating any further would be actually a good thing that "can" be done, improving it would be even better obviously.

I can feel myself going off on a whole ranty post here so I'll stop. I guess my main point was, this disorder sucks enough without getting sporadic care and being 'left' to work through it.

If (when ) I win the lottery, I'll go and build a big EDS centre for us all

Good luck to everyone with appointments soon, excuse the fact I seem quite angry - I am, but at the world in general at the mo, a stage of acceptance apparently. Hope it passes soon!

[Rosie]

Hi all

When I was seen at UCHL hypermobility clinic I was not referred on to anywhere else. However, I don't think it would have been appropriate for me to receive referrals as I did not live within the area. I don't think they can refer on outside of their area? And there must be a limit to how much UCHL can provide to people from outside their own area? I am nt sure exactly how it all works financially, I think it may be different for the National units like Stanmore? As I say, I don't really understand how it all works.

Rosie

[Purplesheep]

Rosie, I didn't expect a direct referral - I would have been happy with the report to my GP making recommendations as to which referrals would be helpful in managing the condition. I was even told during my appointment by Prof. Grahame that he would recommend a referral for custom-made orthotics, as the generic ones I have are actually causing me to underpronate more. However, the report I got didn't mention anything about orthotics at all. I hope I can persuade my GP to refer me anyway, but it would have been much easier if I had the letter from an 'expert' to back it up, rather than just my word for it. Apart from that, the letter had no other recommendations for management of the condition. Apparently, I am fine and don't need to be managed. If only someone could tell my body this.

Laracomps, I agree with pretty much everything you wrote. I also feel 'dumped' and left alone after diagnosis - which was over a year ago, and I've tried lots of things to get help since, but at the moment I'm just wondering what the point is. Like you, all I really want is some support to make sure my EDS doesn't get worse. It seems that is asking too much! I've personally found it fairly easy to accept that I have EDS, probably because it was such a relief to find out why I've always felt 'different', but I'm finding it hard to accept that I can't get any help whatsoever, even from the specialists in the condition. Anyway, I will stop ranting now! It somehow helps to know that others have had the same experiences, though of course I wish we could all get the help we deserve!

[Spireite]

I agree – it is the total lack of support and help. What other conditions would you get a diagnosis, eg heart failure, broken bone and then be left to research it and fight and fight and fight for some help? It is the total refusal to know what there is to help with, in that when I raised the areas I was abruptly shut up, that I find unacceptable. There is nothing in the letter to the lethargic GP to suggest that with this condition, which my GP has never heard of, needs anything to be done at all. Purplesheep I agree with you. This also leaves me feeling abandoned. It is worse because after seven years of hell and you finally think you are going to get somewhere, not even the top specialist will help.

Purplesheep, my Prof G letter contained many errors too. We should sort of swop. A lot of my consultation was discussing my many HEDS relatives and then the letter says I haven’t got any. He writes quite a bit about how he explained the condition to me and he didn’t. Well I’d already researched it and diagnosed myself. He says I’ve got widespread pain and I haven’t got any. He says I did gymnastics and I didn’t. He doesn’t say what the problems actually are though.

I stood up throughout the consultation, but he refused to know why.

So I carry on, on my own, improving myself. What is the point of doctors/specialists?

[Purplesheep]

It really sounds like we should swap either reports (or relatives), it would probably be slightly more accurate that way! At least gymnastics was not mentioned at all in my report. It's strange, but it's somehow comforting to know others got treated in the same rude way too, at least I know it wasn't entirely personal (other than the pretty creepy remarks about my appearance ). I'm still having a hard time understanding why so many people report back great things from their appointments with Prof. G., maybe some of us were just unlucky in that we didn't fit his 'profile' of what an EDSer should be like, or perhaps we just caught him on a bad day. I guess it will remain a mystery

[laracomps]

Someone must have heard me moaning about not receiving any info about the COPE pain management programme at Queens Square as I got a letter about an information day yesterday.

I've got to go up on the 15th July to a hotel in Russell Square for a couple of hours. Anyone else?

Also, I tried searching for a thread on the COPE programme/course can't remember what it's offically called. Is there one? I saw the one for bath and stanmore pain management, but not for the one at Queen's square, unfortunately "cope" is a word that comes up quite frequently on the forum

[Stone]

Don't think it has a name, it's just the Pain Management Centre. Their two 'products' are being seen by the psychologists and doing their Physiotherapy and Pain Management sessions, either singly or in groups. They're pretty good, hope it helps you

Stone

[juliepops]

Hi I had my appt at UCLH yesterday and am a very happy bunny!!!

The doctor ( Senior Registrar ) I saw was hypermobile herself and had family members with the syndrome. She was so good, I had the most thorough examination of my joints that I have ever had.
Before my appt I wrote several lists - brief medical history from childhood, list of medication I was on, all other current medical issues and list of all symptoms I have experienced over the last 18mths.
The doctor used these lists to discuss things and for her note taking. She was going to refer me to the HMS physio at UCLH and my hubby and I were both panicing about the cost etc of going up to london for several visits. We were than joined by the Consultant Rheumatologist who went through my notes. I told her about the awful experience I had at my local hosp and she said that she teaches rheumy docs and is making hypermobility a top priority in the hope that future docs will give us a better service. She then decided that as my main concern was if I could improve enough to work again that she would refer me to Stanmore for 2wks as an inpatient for intensive rehabilitation. She stressed that if I have the determination and commitment there is no reason why I shouldn't "ditch the wheelchair"!!!
It was a very positive experience for me even though I was worried that I didn't get to see prf Grahame. Now just have to wait for the dates to come through. I know it won't be easy but I now fell there is light at the end of the tunnel even if the tunnel is a very long one

Yesterday was an amazingly positive day as my husband, who was made redundant earlier in the year , was offered a job

Julie

[Kattykins]

Sorry to hijack the thread but I just have to respond!

Sending huge lots of very gentle hugs to you!

i am really thrilled to bits for you - what excellent news all round! xx

[star gazer]

Just a heads up, we went to g.p to have daughter referred to Prof G at UCHL and hadn't heard anything for weeks,(NHNN suggested g.p referral to Prof G as it would be faster!) I phoned out patients and she wasn't on the system, then a feeling occured, I remember on the letter the g.p cc to me at the top it said private referral (not what we requested as no med insurance) So I phoned prof Grahames private secretary who is lovely and yes it is a private referral, I could go back to the g.p and get her re referred again and then have to wait again for an appt. but as she is hopping to go to uni in sept we need all dx in place before she goes so that any extra support can be put in place, so sharp intake of breath and a very lean few months ahead of us I have taken a private appt. for her at St Johns next week.It always amazes me how quick everything is when you go private, Had to for son as UCLH wouldn't see him in the adolecent unit.All I can say is thankgoodness we have not planned any holidays to pay for and I can budget a very tight ship to get this paid for. So if you are asking your g.p for a referral to Prof G and it is supposed to be an NHS referral, just double check that it hasn't gone through as a private referral by mistake.
Hi Lara I am at NHNN on 15th I will pm you with times might be able to cross over for a coffee!!
star gazer

[barkingmad]

hi Julie, that is a wonderful outcome from your appt and fab for your hubby to get a job too. Keep being positive and slowly moving forward, it can and will work for you.

[Lou]

Just to update again, I got a referral to the gastrointestinal doc a month after my appt where I was diagnosed, and when I phoned the first appt was for mid-August. It's now 2 weeks til my physio appt.

My muscles have become even more stiff and painful and I just feel less fit and more stiff generally. I also feel there's a problem with my neck. I don't know who to see, there just doesn't seem to be much practical help.