Chapel Allerton Hospital - Leeds

[TED]

Hello all,

I have just been sent my daughters appointment to go to the out-patient clinic at Leeds but the letter says its under the care of a Dr {mod edit - Dr's name removed, please read site rules} Does anyone know who this is? Is this someone knowledgeable about hms?
I am not willing to travel for 4-5 hours if this is going to be a waste of time.

Can anyone advise?

TED

[carmencleo]

Hello everyone - I've come for a rant! Sorry to inflict this but I've been so upset about it.

I have been seeing Prof B for years and was worried what would happen when he retired. I went to an appointment at Chapel A last week with a doctor I've never met before. She told me that she knew very little about hypermobility and that my x-ray results FROM LAST YEAR showed significant osteoarthritic changes. She did not examine me. She said she would ask my GP to refer me to Manchester as the Leeds clinic was closing and I'd basically been called to an appointment to be discharged. I said I wasn't pleased that the clinic was closing and she told me that I'd been "lucky" having it in Leeds for the last 20 years, so now it was Manchester's "turn". She also said there would be a long wait for an appointment at Manchester and that she "felt sorry" for the doctor there who would have to deal with all the new patients.

By this point in the appointment I was already in shock, but it just got worse. I asked if there was anything that could be done to help me, specifically whether any sort of supports would help, and was told no - there's nothing available except physio (this is clearly not true - there are all sorts of supports out there!). I said that Prof had discharged me from physio (I think I've had 7 cycles in the past at various hospitals) because he felt it was doing more harm than good, and she just said I should go anyway.

I then asked if I could see an occupational therapist, as I've been having trouble putting my socks on due to the arthritis etc in my hip, and she said no! Apparently this was because no occ therapist would know about my condition and I should just "ask the physio". She topped off my visit by describing my hypermobility and osteoarthritis as "an inconvenience" and told me not to put on any weight, but would not advise how to achieve this - again she just said "ask the physio". I left in tears. I feel like nobody will help me, I am getting no treatment or help keeping fit or advice re strapping etc. Has anyone been to Manchester yet? Will it be better there or will they also think I'm an inconvenience?

[nemonie]

I'm so sorry that doctor was such an a**e to you. I just can't understand their attitude as Dr T has just recently started taking on patients at CA. I think you should ring up the HMSA help line as they may be able to help you. Also I would write a formal letter of complaint about that doctors attitude and manner - demand an apology off them and also state that they don't know what they are talking about.

You should be able to access Occupational therapy or orthotics (depending on the hospital) and get splints and braces for various bits of you. You should maybe ask about hydrotherapy at your local physio department if physio is too much for you.

If you do have to go to the Manchester clinic, check out the thread on it, Dr H is lovely apparently but the waiting list is very long.

[Triality]

About the Manchester clinic, Dr H is very professional and polite - and not chilly with it like some I've met.

I was diagnosed with EDS hypermobility by her last November, and immediately referred to physiotherapy and occupational therapy at Manchester Royal Infirmary, who have also been really great for me - the physio decided that actual physiotherapy would do more harm than good and set me onto a course of hydrotherapy in their pool. It's already doing wonders for my general health and stability after only four weekly sessions. They're planning to give me the six weeks everyone's allowed at one time, then reassess me to see if it's helping - which, they already know it is, so it's just a necessary formality - and give me another six-week course, and so on. I'm losing some of my excess weight through it, which is also helpful because I have a history of bulimia and it's helping me get healthier in that sense too.

My occupational therapist at Manchester, S.B., is brilliant. She's observed my range of movement insofar as I move during our sessions, and determined ways to help me based on that. I'm not allowed to lean forward past 45 degrees because my lumbar vertebrae try to subluxate, and try not to cross my legs because that tries to pull my hip out. She's given me a grab claw to aid in that, a couple of devices to aid with putting on my socks without dislocating my hip, a wrist brace to use when I'm using my walking stick so my wrist doesn't try to dislocate, something good to wrap one of my ankles, and a good deal of verbal help in figuring out what I can and can't do. The physiotherapist doing my hydrotherapy's really good, too.

In short, though it may have caused you some distress to get pushed onto her, I strongly recommend seeing Dr H if you can get an appointment with her - for me it was like everything finally started getting a move on with my treatment after I saw her.

[mrsc2b]

I feel awful for you all.
I had a really good experience at CA in Jan under Dr B. I've already had physio assessment and an MRI since my appointment and am awaiting the pain clinic referal as we speak. I came out feeling stronger. I was told that physio is still available but on a very reduced basis on ward and only used if really necessary so it looks like I wont be going for a stay anytime soon. I've really missed my break this year as it helps me get throught e working year!
I hope it improves for you all
best wishes and good luck!
xx

[TED]

Hi all,

Changed my daughters appointment to Dr Tan. How have others got on with her? My daughter is happy that it is a female she will be seeing.

TC

TED

[ladyred]

Hi guys

Just popped in to ask a quick question please.

I have always seen Prof B at Chapel Allerton but as he's retired, I'm due to see a Dr /////// Has anyone seen him Yet? I'm just wondering what to expect really

San xxx

please note we do not have permission to use professionals name in this case. As a rule only medical advisors names can be used. Merged with main Leeds thread.

[cat]

Hi,
Can I pls request info for the pilates dvd as recommended by Proff B?
Thanks in advance,
Cat x

[carmencleo]

Thanks so much for your replies everyone. It's so good to know that I'm not the only one and that there are some interested and caring doctors if you search for them! I've no idea why a person would become a doctor if they find patients to be such a drag. Going to ask my GP what he thinks I should do with reference to trying to get Chapel A appointments with someone else from now on. Best of luck everybody!

Cxx

[cinders]

I got a letter last week inviting my 9nine yr old daughter to an appointment in Leeds with a doctor A. (was supposed to be at 5.40pm tonight) Not much notice to change the appointment. Anyway I finally got through to someone on Monday to change the appointment. They said to bring her with to my appointment on Monday (28th). My appointment is with Dr.Tan yet I was told originally that no one at chappelallerton was seeing children under 12. When i mentioned that although Prof.B saw my younger daughter of 4 b4 he retired I don't have a diagnosis in writing which I need for school to put anything in place if or when she needs is in the future. So I was told to play daft and bring her with too and hopefully Dr Tan can give me something in writing or refer her on somewhere. I was told she is lovely but obviously not as clued up yet as Prof.B.

Forgot to add that I was also told that as well as Dr Tan there is another Dr A who is also seeing HMS patients!!!!!!?????? this must be the one my daughter was originally referred to and apparently this dr is doing the evening appointments which is useless for people travelling from out of Leeds i would think.

So I am trying to think about what I want from the appointment. Do I take it for granted she has my notes from Prof.B? I can list the joints that are giving me increased problems. But don't really know what they can do for me. The physio I saw in Leeds ages ago gave me so much it was unmanageable and cos i never knew if i was doing them right they caused more problems

I also want to know (but doubt she will have the experience to answer) if my vochal chord problems are linked to the HMS which I widely suspect. I am seeing the Ear Nose and Throat specialist tomorrow night and fear that my voice will never get any better than it is now. I had nodules removed from my vochal chords on the 1st Oct and although I can now talk better than presurgery I can not talk over any noise, background noise, classroom, projection, and can't even raise my voice to kids! So teaching is a job I fear I may not be able to carry on with. I never thought it would be due to my voice. Always imagined it would be my back or other joints that would stop me working but I have managed the teaching around my health quite well till now.

will report back next wk after appointment with Dr.Tan.

[butterfly81]

Hey

I have received a letter today saying I have an appointment with a Dr D on 30th March in the evening. Was a bit confused as I am not due a review until September also it will be very difficult to attend due to the short notice. Have just phoned the hospital to query why I have an appointment and was put through to the Rheumy dept after the booking people couldn't help. They have told me that some people who were on Prof Bs waiting list are being called in (as I understood it) basically to see if they need to be kept on the books or discharged because there are so many patients. She also has said she doesn't think I will be able to change the appointment and if I don't attend I will be discharged but she has given me a number to call on Monday to see if they can change it.

Has anyone else received a random appointment like this or seen Dr D? Apart from being ever so slightly annoyed at the short notice and possibility of not being able to change it I am a bit worried that I'm going to be struck off the list and left with no help.

[carmencleo]

I'm afraid I don't know who Dr D is, but after my recent appointment I think you are right to be concerned that you could be discharged. Your GP should be able to refer you to another rheumy if s/he's the helpful type. Mine is certainly writing a letter, although sometimes I think it's to get me off his back! There are some recommendations for other helpful rheumatologists earlier in this thread.

Best of luck!

Cxx

[jeanz]

been to see my dr this morning and he is going to refer me to leeds, can you ring up and ask who to see or is it just a matter of who you get put with? any advice on any thing i should take with me? should i right things down? any advice welcome , though i dont have my appointment yet. Dr said he will try to refer through choose n book and if not will refer direct.

[barkingmad]

Hi Jeanz,

Good luck with Leeds! At the moment you are allocated to any rheumatologist and Leeds are adamnant that they are not interested in being seen as a specialist HMS clinic now that Prof B has retired. You would be better served at one of the other recommended clinics. Maybe Manchester but there is a long list or perhaps if you are lucky Gateshead. the only clinics which are currently recognised by the HMSA as being 'specialist' in HMS's is UCLH, Stanmore, GOSH ad Glasgow.

there are lots of suggestions on what to do to prepare for your first appt. Have a look through the diagnosis and doctors section for more advice.

[_Sara_]

I have an appointment with Dr Tan in October. Would you suggest trying to get an appointment with someone else? (I hope you don't mind me bringing up a tread from June )