Professor Grahame- who is he? Appointments?

[Omega]

Well I'm back! I arrived and he called me in. He had absolutely no notes or my referral or anything, despite my having been assured he would be handed them in person on Thursday. So he had nothing to go on or start from. However he asked me tons of questions, examined me and concluded I do indeed have EDS III which was a mighty relief, I was scared he was going to say nothing was wrong with me.

We also looked at my other symptoms which I had brought with me and he thinks I may have a problem with my autonomous nervous system and have been referred to a Prof Matthias at St Marys Hospital Paddington and will apparently have to go up there for a few days for tests. He did seem a bit rushed and flustered and sometimes a bit short but on the whole was a nice man and it was worth the long (11hr) journey to have confirmed what had been suspected which is a mighty relief.

Just have to sort out my autonomous nervous system now!

Hi

Sorry for dragging the old post back but I thought this was very helpful.

I too, am due to see Prof G privately, at the end of this month. What worried me was, his secretary didn't answer all of my questions (there weren't many but relevant ones such as "Can I send you some letters written by other doctors and forward some relevant test results available so far in advance to you"?). She didn't say either yes or no. Quite strange.. I took her silence as NO. I hate it when I would be placed in a situation where it makes me feel like "I ought to know better, sorry I had to ask, to a brick wall...". I'm no mind-reader, I CAN tell you.... She could have just said NO if that wasn't possible. I take it this is quite common with those teaching hospitals which haven't got enough resources dealing with patients in that administrative level? Secretary isn't prepared to do additional work for Prof G's private patients at another hospital by the sound of it..(?) I try not to take it personally. I know some of these medical secretaries aren't very good with communication with patients (some are, mind)

This post clarified me that busy Prof G won't be looking at background info of each patient in advance. I don't think she (his secretary) meant badly but it could have been slightly better (room for improvement there?). We aren't too sure re. availability of disable parking either. It's a bit OTT knowing there aren't any disabled parking for the disabled in 21st Century unlike dark ages??

Knowing this a private hospital, it does not provide a disabled car park for patients...I'm even doubly shocked as not all patients are able bodied, yes? Certainly, the hospital doesn't seem to be making concessions for the disabled. Of course, I'd stand corrected if that isn't the case.

[star gazer]

Hi omega the private hospital has only a small drop off area at the front from what I remember, it is in a semi residential side street so don't know about street parking might be worth phoning the council who deal with parking in that street to find out. I used a taxi when I went. Alo took a copy of all relevant medical notes to the appt. prof g so some time to read these, he likes to make his own evaluations and from the questions he asks to (there are many) he will expand on the ones that cause a problem. I left all copies with him so he was able to refer back to them when making his evaluation and very comprehensive feedback letter. We knew before leaving our appts. what our diagnosis was and what the suggested couse of action was. this was for my 2 children. I was seen at uchl nhs. Prof Grahame has a secretary who deals with nhs and one whe deals with the private patients. As far as I'm aware he only has private rooms at one hospital.
have you looked at the hospitals main website to see if there is any info about parking.
best wishes
star gazer

[barkingmad]

Hi Star gazer

How so kind of you to reply. I really appreciated your reply!!

I did contact the private hospital over Email to no avail whatsoever re. disabled car parking. Perhaps, I ought to phone the hospital in this instance. I still personally think it's wrong for the disabled, with this private hospital not providing any public info about this essential facility. I did wonder how people coming from much further afield would cope at all. Discrimination could be a wrong word but perhaps, lack of disability awareness in this day and age. Their "customers" must be at least 40-80% disabled or being so frail.

It's a real revelation to me that Prof G has a separate PA for his private appointments. I wasn't sure if that is the case as my appointment was scheduled by the NHS PA. But, I will ask his NHS PA. When I queried, it was a bit of a frosty reception for a complete new patient. Questions not answered (ignored) etc. I'd try to phone the private hospital on Monday re. disabled car parking as well. I'm thinking of delaying the appointment at the moment in the light of all this.

Yes, I'm in the process of making copies of those letters at the moment. I have "complied" my symptoms so far..and that ended up quite lengthy. I'm just hoping Prof G won't be too annoyed by my lengthy paperwork...Yes, I try to have a summary of my troubled areas as well.

I have to say, without this board, I would have been completely at a loss! Thanking you

[barkingmad]

Hi all,

When you see Prof G privately or on the NHS you will find he likes to do his own assessment to see if you fufil the criteria for HMS or EDS or one of the other HM syndromes. He always asks you what individual difficulties you have but completes his own notes and an assessment form to aid diagnosis.

I have spoken many times to the secretaries and they have never been rude or dismissive...very, very busy without doubt but I am sure they never meant to upset you at all. It really doesnt appear to be in either of their natures. Maybe you had someone covering who really didnt know the whole process that you were asking about? This seems likely as both of the normal sec.s know the process.

A lot of us (especially those who live away) do send in notes in advance, there really is little point taking them with you because he wont have much time to read the notes and see you at the same time. As far as I know, he does quickly review any notes he has on you but then concentrates on the presentation as he sees and examines you. This isnt necessarily a bad thing as its usually beneficial to have confirmation or re-confirmation of your diagnosis.

He has a PA who is part of the private clinic. I dont know about disabled access as I have never visited the private clinic, usually we visit the NHS HMS Clinics. We will have details of the private clinic on the new website and it would be good to remind us when we are in the midst to leave access details!

By the time that we make it to the Hypermobility Clinics we tend to be in a pretty desperate place, usually have major problems with our local services and no confidence in our local teams. So it can be pretty easy to put the professionals with experience and most importantly 'belief' in the impact of HMS on our lives on a pedestal. Only to find that we didnt get quite what we expected from the appointments.

But believe me ALL the medical advisors or specialists are really struggling to keep up with the number of referrals. Losing the clinic at Leeds has had an enormous impact on the UCLH clinic and there is no sign of the level of referrals abating! This is forcing more of us into the private clinics which the professionals involved feel just as responsible for seeing as many people as they can to help 'us' out due to the demand. So sometimes services in either the NHS or private will feel less than ideal and the specialists get knocked off their 'pedestals' for perhaps just being a tad to human! All the HMSA specialists are comitted to their work with the HMS's.

I will get off my soap box now..and I hope I havent offended anyone. I just remember how desperate I felt when I needed to know what on earth was wrong with me and back then there was a lot less pressure on the services.

[star gazer]

Was going to add to my post that when speaking to Prof Grahames Private pa she was absolutely lovely and very apologetic that a letter had not gone out to a paed this was immediately sorted out and I found that I was the one saying thankyou to her for sorting things out so quickly. I also found that when talking to people at the private hospital they were very helpful a supportive especially as I had never experienced the private side of things. Having dealt with medical consultants and professors for most of my life due to illness, Professor Grahames consultation was probably the most thorough and comprehensive I have ever had. I wish I was given the same input by some of my other doctors (g.p aside as he is also excellent). I only attended uch once to go to the hms clinic there after which i was discharged into local care, at first I was suprised at this but have now come to realise that this is the most efficient way of dealing with things, I have already accessed orthotics, physio, wheelchair services, and ot through my local services and this was becasue I had my dx from prof G. Sometimes when coming out of those appts. you can feel a bit lost as to what to do next but I found that on Prof Grahames feedback letter there was a suggested plan of action. It was my children who were seen privately because they were of an age that they are to old for gosh and too young for hms clinic, we also saw prof Grahames ot ( sent over from gosh) and physio for our son so that we could get a programme started quickly. for me after spending several years of knowing that something was wrong with my child it was a total relief to see prof G and have such a thorough evaluation, and he was absolutely lovely with my boy and took the time to explain everything to him. When we left the hospital I asked my boy if he was worried about anything, his reply "no mum it's a relief to know I am not going mad" I know the service is very over run as is the autonomic unit with often a very long wait for appts. but a few years ago these facilities were not available. I have been a patient at nhnn for 35 years!!.
sg

[barkingmad]

I am glad that you can answer some of the questions I cant over the private clinic...i know it is different since I attended as a private referral..It is so wrong that we have to fight like this for services which is perhaps why I am so defensive of the few we have! I also remember the huge relief of validation and then the crushing blow of realising that there was no quick fix or 'cure'. Which sometimes is why I think a few pedestals get knocked around a bit.

I can reassure you all and say UCH does care about the quality of their service to HMS folk, we are in contact regularly at their request but without additional funding there are no fixes.

Also Star Gazer is right, it is now standard to be seen, diagnosed and discharged all in one hit, unless there are underlying issues to be resolved. this works out quicker for all in the long run. As is if you need to be seen again you can seek a re-referral which is treated as a first referral guaranteeing you are seen wthin the 18 weeks etc. If you stay on the list you are not likely to be seen when planned because it is pretty impossible for that to logistically happen, so you can end up waiting months after you were expected to be seen.

I am sorry to be the bearer of such doom and gloom but i just want to try and give new users a sense of the realistic difficulties facing the UCLH clinic.

The is a planned debate at the next Rheumatology conference in Glasgow May2012...and again it will be a fight as the title is to do with whether HMS has been overmedicalised!

[Omega]

Hi barkingmad

I have PMed you if that's OK.

Many thanks,
Best wishes,

[bree]

Reading this post with interest and I have to agree with Donna. Yes its shocking that we have to wait so long for services but thats not done to the doctors there. Since seeing professor Grahame and all the other wide network like stanmore etc, I have been overwhelmed by their compassion and genuine desire to help us bendy's. If I am right they attend residental weekend without even getting a fee, not a lot of doctors do that. I do think we have to remember they are only human and yes sometimes they may not live up to our high expectations, but maybe thats partially because after such a long long fight for diagnosis and help we expect everything to change. But as Donna says after the wonderful feeling of validation, comes that sad realisation that its in a way a life long sentence. That you may never be the person you once were.

Not meaning to make little of people who have had bad experiences, but I just felt I had to stand up for the service. They are working with very little resources and funding. Sometimes it drives me nuts too and I do moan but all in all I am extremely greatful. Think its the government that needs a shaking to realise that there are other health areas apart from the well know ones that need funding.

Can't believe they are debating that HMS/EDS 3 has been over medicalised. When are they going to wake up to all the research that has already been done!!!

[barkingmad]

Re the research Bree I fear never but we will go armed! lol

Omega it is fine to Pm me, please do whenever you feel the need but there can be long period of time when I dont get on here as much as I would like.

[Omega]

Hi Bree

Your post was again, very comforting and reassuring that His service is of high standard.

However, I do sense that issues mentioned are perhaps arising from his administrative shortcomings (not so much as HIS fault directly but some issues in his administrative staff?) Letters not sent out, referral letter not kept in his notes when new patients visiting him etc. Yes, there are human errors e.g. letter gets lost etc but if these are affecting the quality of his consultation, then it's reasonable to question if this is an ongoing issue and something we need to know about on here etc. I'm sure Prof G will appreciate our honest feedbacks and knowing how compassionate he seems to be, from what I read so far, he would be more than happy to rectify problem areas for new patients accessing his clinic.

I'm just saying these from organizational management point of view. I'm sure it's useful to discuss these for new patients simply wanting to have a decent experience without any unwelcome glitch or stress e.g. finding out he never saw a referral letter etc.

[Omega]

Re the research Bree I fear never but we will go armed! lol

Omega it is fine to Pm me, please do whenever you feel the need but there can be long period of time when I dont get on here as much as I would like.

Hi So kind, it was very appreciated xx

[Purplesheep]

It is really unfair on us who have had disappointing experiences with Prof. Grahame to say that it is essentially our own fault and that our expectations were too high or we were looking for a 'miracle cure'. I am sure lots of people have had positive experiences and I got the impression that overall having a private appointment with him, rather than going through the NHS, you will get a more comprehensive appointment, but there are others like me who didn't get any help of support. Then we come here for support and get told that Prof. Grahame is wonderful and faultless and it must be us who were expecting too much from the appointment.

When I went to UCHL back in London, I had an HMS diagnosis from a local rheumy with just a basic knowledge of HMS, who recommended I should go see Prof. Grahame to get the diagnosis confirmed as well as looking at other possible issues and getting advice on suitable treatment to be arranged locally.
I went to the appointment expecting:
- A diagnosis of EDS III, rather than HMS, so doctors actually start taking me seriously
- More information on possible autonomic issues and similar symptoms that I thought might be related to EDS
- Recommendations for what other services I could access locally, eg podiatry, OT, as well as some advice for my current physio
- Hopefully finding out what was going on with my shoulder as I wasn't sure whether what I was experiencing were subluxations
- Advice on pain management, through medication and alternative methods

I got none of these things. The letter I got, full of random errors about my medical history, states that I have HMS throughout. It also didn't mention that I need customised insoles, even though this was discussed during the appointment. It recommended I should have some physio (I clearly said during the appointment I was receiving physio and even gave Prof. G. the name and address and he said he would copy my physio in). Prof. G. got annoyed with me when I said I didn't know whether I was having subluxations, also when I didn't know what a frozen shoulder was and worst of all, when I dared to ask about pain medication and possible side effects. My OH and I both thought he got almost aggressive when I mentioned I was taking prescription painkillers and told me I shouldn't be taking them as they won't help. He refused to discuss any autonomic problems with me and also didn't look at the POTS-related questionnaire I had filled out previously. He also criticized my choice of hobby as a teenager (apparently I should have been doing gymnastics, or at least played the violin, instead I played the recorder, which was not acceptable to him). There were also some pretty creepy and borderline sexist comments regarding my appearance.

Sorry to post in so much detail about this, I just wanted to explain the issues I had with my appointment, as I don't think any of these things can be explained just by saying that the department is overworked and underfunded. I know this is the case, and that is why I was really grateful that I was able to get an appointment quite quickly and also see Prof. G. himself. I didn't go to the appointment expecting to be 'cured' or 'fixed', all I wanted was some help in identifying the right type of help to manage my symptoms and prevent my EDS from getting worse (which it has done very rapidly in the last two years). I also expected to be treated with courtesy and not to be treated like I am wasting someone's time because there is nothing wrong with me. If I had wanted that, I could have just gone back to my local hospital.

I felt incredibly disappointed and hopeless after my appointment, because if I cannot not even get any help from the leading specialist in the condition, then there is probably no help at all. It does help that there are others here on this board who had similar experiences, as I did wonder if it was my fault the appointment the appointment went so badly and that I should have done something differently. I have been honest about my experience and I think it is really important that the negative experiences are also discussed; not just so things can be improved, but also so we can support each other and reassure each other that there is other help we can get (I know that's what I needed after my appointment!). I feel like trying to 'silence' people who have had bad experiences by saying they are just 'moaning', or that they were expecting too much, takes that support away from us. By talking about my experience, I am not trying to be negative or put anyone off seeing Prof. G., I just want people to have realistic expectations, and that includes the good and the bad experiences.

Really sorry about the long post, just felt like I had to say this as I feel indirectly attacked anytime someone says we shouldn't be complaining about the UCH clinic as they are so underfunded. This board should be open to express all opinions and experiences and not just the ones who show Prof. G. in a favourable light.

[teaspoon]

Hi purplesheep,

I just wanted to say that I read what you wrote and that I hear you. I can imagine how hard it must be to see Prof Grahame, and ffeling like you're finally getting somewhere only to be knocked back. I agree that it's important that we can discuss both good and bad experiences. I know for example that the Glasgow clinic has been very unhelpful for a lot of folk, but the fact that it is avertised as a hypermobility clinic, when it is mainly just trying to identify people for research, makes it hard for folk to get referred to London or wherever.

As someone who stays far from London hearing stories like yours about Prof G (and I'm sure you're right about NHS vs private appts - I can't afford private) make me really worried about seeking a referral, travelling all that way only to be disappointed. I would feel more reassured if I felt that your concerns were bieng listened to.

(hoep this makes sense, I'm quite brainfoggy)

[barkingmad]

Hi Purplesheep,

I am honestly not trying to 'silence' you I wouldnt do that. I am sorry that you had such a bad experience, I have no answers as to why you did have such an awful time.

I can only comment on what I experienced personally and the wish of the whole HMS Clinic team to do well...and to ask for feedback. BTW the feedback you ALL left before I did pass on as I said I would. I basically copied and pasted several pages of comments, removed names/personal details of forum users and sent the whole lot, which were positive and negative, some of them naming clinicians directly (which I left in).

I did write in the newsletter that the General Manager Lyn was looking into the comments positive and negative with the team and trying to address them.
I also had a comment from Prof G the other day saying that there were still addressing some of the comments made and that was without me chasing him or anything.

I will chase up Lyn to see if they have made any changes...we want everyone to feel confident in going to UCLH and if that means looking at what isnt working then we will do that as well, including dealing with any comments/complaints about medical advisors to the HMSA.

I am so sorry Purplesheep I did not write anything with the intention of offend those of you who have had negative experiences..most of what I was saying relates to the need we feel for validation and then the crushing blow that happens when we realise we arent going to get a cure...I was like that too, I really was, those of you who knew me at that time will remember I was so completely overwhelmed by the thoughts that finally I had an answer but there wasnt a good solution to help.

Once again many apologies!

[bree]

Hi Omega and Purplesheep

I am sorry if my post upset or offended you, i was in no way trying to make little of your experience or say it is all your fault, if the consultation did not go well at UCH or you did not feel you got help. I would never say that to anyone, I had to fight years and years to be taken seriously so I do know how horrible it is. Like you said purplesheep we all have the right to express our opinion and thats all I was trying to do. The point I was trying to make is that I can relate to Donna, in that I got quite angry/sad for a while that I was not been "cured", that whilst I did have answers I still had to struggle with these life changing symptoms and for a while I was quite angry and disappointed with the system. So for me I felt that was part of the problem and maybe other people felt that too.

Omega, I do believe you are right that there are a lot of admistrative errors and these do need to be brought to attention. It is right that we say what is wrong with the service so that improvements can be made. I do feel that lack of funding and resources will impact on the care that we get and it is important to address that do.

Again, sorry for any offence it was not intended and I really was not trying to silence anyone. Just trying to be positive and share the good experiences that I have had . Just to clarify I am an NHS not a private patient.


Bree