Please post here for UCHL visits -

[Rosie]

Hi Andrea

the appointment will probably be about 30 to 45 minutes, although this can vary depedning on the individaul. However, there is no guarantee that you will be seen on time, and they are likely to want blood and urine samples, and sometimnes x-rays, so it is hard to say what time you will be clear. Sorry I can't help more, but it may not be possible to say whne you will be done.

Rosie

[pen]

Hi there - I saw yet another orthopaedic consultant at my hospital who didn't offer me any help with the many problems I have. I have early onset arthritis due to untreated hypermobility. When I asked him to refer to Professor Graham he said he only dealt with childhood hypermobility problems. Please could you tell me if this is correct? I feel extremely let down by the medical team in my area & am making an official complaint about them but wondered if you could confirm or deny this point for me. Thank you.

[Rosie]

Hiya

No, it is not correct, Prof Grahame has an adult NHS clinic at UCHL. Th details for this clinic are given on the main website, and many of us (adults) have been seen by him and his team there. Try printing out the details and taking them with you.

Rosie

[pen]

Thank you so much for your reply, Rosie. I will print this out & include it with my complaint letter. I will also copy my complaint for my GP as he really thought the hospital would help me. They completely bodged my THR in 2009 & my problems have been made much worse by this as my right leg is now one and a half inches longer than the left. I was offered no physio or pain management treatment at all & all my family & friends are totally disgusted by the way I have been let down too. Should my GP now be able to refer me to Professor Grahame as this so called consultant was no help at all?

[star gazer]

Hi pen, i was referred to the prof via another hospital but my daughter (Adult) was referred via g.p.
As the wait for nhs appts. is quite long it might be worth asking your g.p to see if he can refer and if so get the ball rolling.
I hope you get the help you need soon.
best wishes
star gazer x

[pen]

Thank you stargazer!

[barkingmad]

I have added the below posts from two of our members who we have been working with recently in connection with how they feel their appointments went at UCLH. Please can anyone posting on services that they receive whether good or bad at any of the hospitals or with any professional recommended and supported by the HMSA please see the announcement entitled 'Discussing Services and Naming Professionals'. I have added it at the bottom of this post for your ease...but please ask new forum users to read the rules and check the announcements.

Hi all, took Dom to see Prof G yesterday and was discharged. Being honest I
think he is extremely overworked because I found this follow up very
different to the first appt with him and left feeling quite frustrated, as
if I didn't have enough of a chance to talk to him or for Dom to explain
all his problems. When we first saw him I left feeling so hopeful. Since
his letters the school and GP have taken things much more seriously. I just
felt a bit disheartened yesterday and I don't really know why?

Prof was short on time, which I understand as he was running about half an
hour late. He didn't examine Dom, but Dom told him the pain was getting
worse and he felt a lot worse. Prof asked why the authority hadn't agreed
to Dom going to Bath for pain management. I explained that they refused
because they didn't believe it would help, he said "didn't they read my
letter" then told me to complain to the MP and the Queen. I will complain
and ask again because I need Dom to get the help he deserves.

I explained he has started getting breaks in his small bones and he said he
definitely needs the bone density scan to be sure as to why.

Then, I knew the next bit was coming, he told me Dom was overweight. I
weigh him regularly and his weight was different on the scales to at home,
prof said even if I was right Dom was overweight. I could see Dom getting
more and more uncomfortable. He said Dom needed to join a gym, I explained
in our area they don't allow under 16's into the gym because of health and
safety (plus on income support I would find it hard to pay for an expensive
one such as David Lloyd that do have under 16's). Eventually he said he
would get the GP to find a gym for Dom that would be ok for a 14 year old
(he is 14 and nearly 6ft, weighing 15stones - I know it's too much to weigh
but it's very hard to lose weight when you're laid up most of the time -
lately he's been struggling far more than usual, he's just getting over a
broken wrist and hand that happened 2 weeks apart.) I want him to have the
help, and to lose weight, just no-one would believe that Dom eats less than
Cass who is 20, 5'2" and weighs 8stone. Even Cass said "well he doesn't eat
as much as me" when we got home.

When it was time to leave he said "well it's a long way to come to say
hello so I'm going to discharge him, if you need a re-referral I'll be
happy to see him in the future"

I just feel a little 'dropped' and it was worse because Dom was so upset
afterwards and in so much pain today with his neck, finally tonight he
broke down in tears. He said he couldn't cope with the thought of going
back to no-one caring and helping him, plus he felt like the Prof was sick
of him, even cried and said he didn't get chance to tell him about all the
new things that had happened and all the problems he was having.

I feel such a moaner saying this, I should be greatful for any help at all,
but the first appt was so amazing then this one felt such a let down.
Having said that when I think about it, there's not a lot more he can do if
the area won't allow Dom to go to Bath either ........ it's not like he was
saying Dom's perfectly fine now get lost, he agreed Dom needs more help,
but what can we do? I'm more upset that I had to watch Dom upset I think,
and that's always so hard watching your child cry in pain and watching them
hitting such a low

41 with HEDS, autonomic dysfunction, IBS, migraines, fibromyalgia,
osteoarthritis, high blood pressure, underacive thyroid
Son 13 : HEDS, autonomic dysfunction, IBS - appt UCLH 27.4.2011
Daughter 19 : HEDS -awaiting appt UCLH
Dad : HEDS

jakerleenenthusiast Posts: 322Joined: Sun Jun 17, 2007 8:52 pm

> know very well how you feel
>
> I also had a very disappointing experience when I saw a professional the HMS clinic
> exactly a year ago. He was very busy then also (running an hour late), but
> no matter how late or busy you are, that doesn’t excuse being rude (he
> snapped at me too when I wasn’t giving the answers he wanted and asked
> questions he didn’t like) and not providing the same standard of care that
> other people get.
>
> Have you seen your GP about getting referred to a dietician or maybe
> getting Dom referred to have some tests if you think that there might be
> another reason why Dom is struggling to lose weight?
>
> I also felt really let down and abandoned after I got no help from my
> appointment with a professional whatsoever. I think it was because he is
> the country’s leading expert in HMS/EDS, so if he doesn’t understand, who
> will? I felt quite hopeless after my appointment, even though I didn’t go
> in with particularly high expectations. All you can do right now is keep on
> fighting for Dom to get the help he needs, ie the referral to Bath – maybe
> not write to the Queen, but perhaps write to your MP and you could also try
> local media.
>
> It must be terrible feeling so helpless when seeing your child in so much
> pain. At least I am an adult and am quite good at standing up for myself
> and complaining about getting the help I need. I think it’s very important
> to let Dom know that it’s not his fault, it wasn’t anything personal and
> that there will be someone else that can help him. It might take you both a
> few days or weeks until you can feel positive and up to fighting for help
> again, but you will get there and we are all here to support you with
> advice.
>
> I hope things get better for you and Dom soon!
>
> Purplesheepenthusiast Posts: 213Joined: Fri Apr 02, 2010 3:13 pmLocation:
> Coventry, UK

The HMSA does feed back information to Medical Advisors and UCLH whether negative or positive at their request. We would like to stress that we really do care whether you receive a poor service at any hospital we support and recommend. However, we have to be very careful and we cant allow direct naming of professionals because of the risk directly to the charity, and of causing offense to our Medical Advisors and the professional relationships we have with them on behalf of HMSA members. We ask that whilst you can say you had a rotten time and why... that you do not make any personal comments about any of the professional or name them. I would be happy for you to be more specific in an email to me at admin@hypermobility.org and I will of course pass on the feedback.

We accept that the way we have to moderate these posts can cause upset and we do apologise for that but the staff and moderators have a duty to protect the HMSA from any potential legal issues as well as a professional curtsey to the professionals at the services we recommend. But we would also like to stress that those people who do not feel that they had a good service have a right to express their disappointment and frustration. Their opinions are just as valid and important as those who receive positive services.

[Sparklysazza]

I got diagnosed at UCHL yesterday. The consultant I saw was lovely. I was really anxious before hand (having been rudely dismissed by a GP when I asked for a referral) about whether she'd be able to see how bad my problems were and how they were affecting me, and if she'd believe me! My fears were allayed as soon as she started asking about the problems I was having and seemed to completely understand without me having to say much.

I'm really happy to have a diagnosis, but I'm feeling slightly deflated at the same time. There wasn't any information given on what the diagnosis meant for me now and in the future. I've been referred for specialist physio at UCLH, which she seemed to think would really help with the pain and fatigue, so maybe I'll get more information there, but I am feeling a little lost.

One thing I'm very unhappy about, is the fact that I wasn't actually told about my appointment!!! When I got my original referral letter, and called to make the appointment, I was told they were fully booked but I should get a letter in 3 weeks with an offer of an appointment, and if I didn't, to call them again after the 3 weeks. The man I spoke to was very clear on this. However, when I called back 3 weeks later after not hearing anything, the man I spoke to said that that wasn't how they worked and there was nothing he could do and I'd just have to wait and I'd get a letter.

A few more weeks passed. I was having a bit of a bad day last Friday, so a friend suggested I call in again to see what was happening, so this time I called the Rheumatology dept instead of the general Outpatients number. The lady I spoke to looked me up, and told me that I was booked in for Tuesday! I said that I hadn't received any letter, so she checked and apparently it had only been booked the day before. I still haven't received any letter, so if I hadn't called, I would have not known about the apt and missed it, marked as a no-show and put back on the waiting list Even if I had received a letter, with it being booked less than a week in advance, most people wouldn't be able to get time off work at such short notice, so it would have made sense for someone to phone me to tell me about the appointment and make sure I could actually take it.

So, in summary, really happy with the consultant, not so happy with lack of information (almost everything I know about HMS is from this site) and really unhappy with the appointment booking and communication side of things!

[Sparklysazza]

My letter notifying me of my appointment arrived this morning - the postmark on the envelope was the SAME DAY that my appointment was booked for

[Looby62]

Hi,

I had an appointment at UCHL yesterday and I'm so glad I pushed for it.

A local rheumy had officially diagnosed me about 6 months ago but her only advice was to go on an extended European spa break..... Very helpful!

None of the Drs at my surgery knew anything about the condition and disagreed that my pain, fatigue and sleep issues had anything to do with it. One in particular still thinks it's all down to depression and mostly in my head and she told me that not much point in referring me to podiatry as I'm not diabetic.

Anyway, I saw yet another new doc and insisted on being referred to London and was lucky enough to get a short notice cancellation.

I saw a lovely woman (Dr. C.....n on Dr. K..K..'s team).
All the usual bendy tricks were done and she knew my history so had obviously read my notes.... Something new in itself!
We discussed medication and a management plan, blood and urine samples were taken.

It was decided that I would benefit from specialised physio, podiatry for orthotics and a hand therapist. Because of travel issues she is asking my GP to arrange this locally but has given me the option of going back to UCHL for these if my GP is unhelpful or I feel that things are taking too long!

Dr. C asked about my children and was concerned that their issues were not being addressed. She urged me to get them referred and also suggested they see Prof M as soon as possible about vsovagal syncope and POTS.

I really could not have asked for more. I would encourage others to keep pushing as just seeing a Dr. who understands the condition and all it's complexities does wonders for your peace of mind.

I hope you all have such good experiences.

[Jaydee]

I was just wondering how long the wait time was for referral? Anyone know?

Thanks

[Lisa77]

I cant be sure exactly how long a referral takes as mine had to go through my PCT but my Doc wrote to them sometime after the 31st July and I have an appointment at UCL on Tuesday. So thats 5 weeks exactly including however long it took for the doc to write to the PCT and for the PCT to agree and for the referral request to be sent to the UCL. The actual letter from UCL is dated mid August so it looks like it took a couple of weeks for PCT to sort and a three week wait for the actual appointment. I hope this helps x

[Rosie]

Hi all

I think that is very quick for an NHS referral. The waiting time target (if they still exist) is 13 weeks, but is often less.

Rosie

[Lisa77]

I thought it was super quick as well but I have also been referred to another hospital in London (also nhs appointment) and the lady there said they have to see patients within 8 weeks. I can't keep up but not complaining lol

[Jaydee]

Thanks for the replies. I got my appointment and yes it wasn't a long wait. The one I dread most is Prof Mathias being a year so I have heard. That's just terrible!

I am having alot of allergy related problems and wonder where they might refer me to? GP is useless - no surprise there I don't doubt.