Anyone been to the hypermobility clinic at Glasgow Royal?

[Ruby]

Just to update my last post about local rheumy saying I ONLY (the cheek!!) scored 4/5 out of 9 for hms therefore may not be accepted at Glasgow clinic- turns out prof ferrel reckons I'm an 8 and would have scored 9 in the past. I kind of felt validated. I hope my old rheumy takes this on board as he really trivialised my problems.
To anyone else wondering if a trip to visit prof ferrelis worth it IT IS. He went out if his way to spend at least an hour with me commenting on my trip to see him. He made some recommendations but ultimately he will write to my gp and rheumy. Yaaay.

[longtallgal95]

Hi Ruby. Thats great news and I am very happy for you. I hope that the diagnosis helps you get some better care.

[ladybirdscot]

Post copied here for board continuity - Site Admin

sparkles



Joined: 24 Jun 2007
Posts: 1
Location: Edinburgh
Posted: Mon Jun 25, 2007 12:40 am Post subject: Glasgow Clinic

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Hey everyone

I've been trying to find feedback from people who've been to the clinic in Glasgow and I can't find any. I've just been referred and I have no idea how long I'll have to wait or if it's going to be any good. The geneticist who referred me only did it so he could get rid of me (local rheumy refuses to see me) and said Glasgow wouldn't be able to help me anyway.

I'm so confused and frustrated. I just want to know if it'll be worth the wait or whether I should just bite the bullet and head to London to be seen privately.

Thanks for any help

Hi, can you tell me, after you were referred, did you receive a letter from the clinic, confirming or acknowledging the referral, or any kind of communication from the clinic. I've been referred too but its over a year ago and I'm not convinced that my rhuemy has sent the clinic a letter as I have always received letters confirming from professionals such as physios even if its just to say I'm on a waiting list.

[longtallgal95]

Hi. I was lucky and received an appointment with Prof Ferrell at Glasgow Royal Infirmary after asking my GP to refer me. I have had tens of years of pain and injuries. It was only a chance remark by someone who said I had "lax ligs" that made me follow it up on the web and I found the HMS site and found advise there. I had already had negative Rheumy antibody tests at another Rheumy clinic some years previously and this is required by the GRI clinic before they will see you. I had had no advise or support from any of the health professionals I had consulted along the way.

The appointment came after a few weeks, I did not wait long and I was seen by Prof Ferrell. I was there about 45 minutes. We talked over my past history (lots and I had made a typed list of what I could think of). I did not have to undress but we discussed my problems and he assessed me. He asked if he could take a video of me being unable to stand on one leg etc. Poor proprioception it is called and I can now actually manage say it! He wrote to my GP. I think that the Prof is possibly research orientated and does not run a clinic that 'treats' patients on a routine basis but it was very reassuring for me. I was told I did not have to go back but could ask to be seen again if I felt unsure about anything he had said. He suggested I see a physio at GRI, who is herself hypermobile, to discuss exersizes, and this was useful but she was leaving the hospital soon after and will be a loss. The diagnosis was good for me as it meant I could research HMS for myself and am now self managing my pain. It meant I could at least go along to my GP and ask for help with some sense of respect for my own health and not feel quite so bad about it.

I bought the new Hypermobility book and it has been money well spent as I can talk intelligently with any health person I see now. I found out that Dr Hakim sees only private patients but it is possible to see the London NHS HMS clinic. I decided against trying for this as I could not afford to travel down more than once and probably all that could have been achieved would be a diagnosis and I had that. I also find traveling hard. I now see an MFR (Myofascial Release) practitioner once a month in Milngavie and she understands my problems and helps with my muscle pain. She advises me about stretches to do and positions to avoid and is worth every penny, I just wish I could afford to go every week! It helps me but maybe not everyone.

If you PM me I can give you a number for Prof Ferrell's office so that you can ask his secretary if the referral has been made by your doctor. There is a very kind Rheumy doctor at Gartnavel who is understanding of Hypermobility, I wish I had met her years ago! Modnote, name removed - see forum rules.

Good luck, don't give up! posting.php?mode=reply&f=3&t=5083#

[gila]

slight 'correction' - dr hakim does see NHS bendy peops (I am such a lucky peop) at his normal rheumatological (not hms specialized) clinic at whipp's cross hospital- but yep afaik only peops living in london/or even only certain boroughs of london (mine's a neighbouring one) can get to see him there...
xxg

[longtallgal95]

Hi. Thanks, that is good to know and you are lucky! I contacted him after reading the book and was told he only saw people privately at St Johns and St Elizabeth Hospital in St John's Wood, London. I have a number for his secretary if anyone wants it.

[Yecart09]

Hi everyone just a note to say this clinic is very busy at the moment, I was referred by my GP a few months ago after he couldn't provide any further treatment due to him not knowing enough about HMS. My rheumatologist I had seen in 2010 has also discharged me as he can't provide any further help. Well I got my letter from the Glasgow Clinic yesterday and I only have to wait 12-18 months!!! So if you were looking to be referred from any of your doctors please do it now as its a long wait, I am now left with no treatment for my unstable shoulder and my very sore hips that I am sure has developed arthritis.

[gila]

yecart- hug! but... I probably wouldnt wait... not that long... -

have you tried to find out if there is a physio near you that knows about HMS, maybe ring prof ferrell's clinic and see if they can recommend one? there seems to poss be someone at the GRI (check earlier posts)
and if not... maybe try to see a 'rheumatological' (or at worst 'any old') physio- and try to help them to help you-

re shoulders this little article by a hypermob shoulder specialized stanmore physio might help
http://www.csp.org.uk/frontline/article/smooth-moves
(and the same applies to all of our joints)

and generally this book
http://www.amazon.co.uk/Hypermobility-S ... 326&sr=8-3
(and you might be able to get your local library to get this for you)

good luck!
xxg

[Yecart09]

Gila sorry just noticed your reply whilst I came on here to update. I am curently paying for private treatment from a sports injury clinic. There is nothing in my area to help Hypermobile people, I have been to my local hospital physio department for 4 different lots of physiotherapy over the years and they are hopeless and thats why I have been referred to Glasgow. My GP is very good but he admits he does not know enough about the condition and what pain meds to give me.

The reason I came on this morning is to make people aware of a phone number that this Clinic uses which is 0800 678 3393. Please please answer the call if you receive one from this number. I was very stupid this morning and did not answer it but then decided to find out who the caller was because I do sometimes get stupid PPI calls so I was going to add it to that list so I knew not to answer it in future. But it was the Clinic to see if I could make a cancellation This number is the number used by Greater Glasgow & Clyde NHS for appointments ect but you can not call it back, it is just a service number that shows up on your phone. I did manage to get a hold of a number to call but the appointment has gone to someone else so lesson learned I will always answer all calls from now on.

Mods please do not remove this number as it will be very useful for people on here waiting for calls about cancellations.

[teaspoon]

I'm sorry you missed it. It's so annoying to have missed calls from numbers you can't call back

[PhillMc]

OMG, thank you so much for the number, i have had thjree calls from this number, and thinking it was a sales call i haven't answered! I have emailed Prof Ferrell to apologise. What a prize fool i now feel!

[PhillMc]

Right i'm preparing for this appointment whenever i get it. I have drawn up a list of questions and injuries/symptoms anything i can remember really to take with me so i don't forget to ask anything. Here are the questions i want to ask, can anyone recommend any other questions i should ask??

Questions:

How do I score 7/9 – this was never explained
Was told by rheumatologist that I wouldn’t have problems with BJHMS but I do, he was uninterested in any history and he did not require me to attend any follow up appointments.
What is a normal range of motion? Have been told not to stretch my joints beyond a normal range but I don’t know what that is.
I have an increase in pain levels last thing at night and firs thing in the morning and am never pain free even with medication and have very disturbed sleep due to pain, can I do anything about this?
Which joints are affected?
Extreme Pain in right shoulder why?
Extreme pain in Right Hip Why? Have been told, arthritis, slipped disc, pelvis out of alignment never x-rayed or checked.
Extreme pain in right knee why? Unknown, told muscle no longer work properly on the inside, knee cap rubs on the tendon.

[ridgie]

I'm so confused by this thread. I was refered to glasgow for a second opinion and I had an appointment with a Dr {mod edit - Dr's name removed. Please tead the site rules} . He examined me and I scored 9/9 for hypermobility but he never mentioned anything about any hypermobility clinic?? Could it be that there isn't one or he just forgot? I told him that my physio at Forth Valley didn't seem to think I would benefit from hypermobility classes held there and he seemed confused by this, so why didn't he mention classes at Glasgow Royal I could attend?

[barkingmad]

Hi Ridgie,

Prof F does have a HMS Clinic but it is small and not well advertised AT THE MOMENT in Glasgow. He usually only sees 4 new patients a month and so the waiting list can be enormous.

Glasgow is working hard at the moment on improving their services and making it a MDT service as well. The HMSA will keep members informed via the newsletter and also we are currently consulting Scottish members on wider issues which eventually will be fed back down to GRI.

[norfolkandchance]

Hm.

I think the main benefit of an appointment with Prof F is getting the diagnosis. He's so understanding and nice too! Since I got my diagnosis, my GP has been fab - sorting pain meds and generally referring me to wherever I ask. It makes me terribly afraid to move away from this area because I don't think I'll get such a nice GP ever again!