Royal National Hospital for Rheumatic Diseases
 

Hi, I live in England and hope you have members living there can can respond.

I found while surfing the net about CRPS the Royal National Hospital for Rheumatic Diseases. They are based in Bath in Somerset (England) and it’s a long way from my home for me but I hope any future dealings with them will be worthwhile.

Basically there are two appointments on the same day then 4 once a week. Then if all is well I would be taken in as an in-patient for two weeks intensive treatment. After one follow up appointment I would be referred to a specialist doctor closer to my home.

I hope to be referred by my general practitioner on the National Health and if successful this would be free which I would need as I don't think I would have any chance of funding it myself.

The main reason for my post is to see if any members living in the UK have any experience of this hospital (Or others) or the type of treatment it offers.


If anyone in the US has any information on hospitals offering the same type of treatment please comment.

Many thanks for all answers and thank you for the wonderful information and members here at Nuerotalk.

Welcome Fisherman. I'm sorry you need to be here but I'm glad you've found us. I'm sure you will find plenty of helpful information and support.

I'm in London. I haven't been to the RNHRD but I have heard of the pain management programme there.

If you do go to RNHRD or any other programme, I would really like to hear about it.

KimA

Hi Kim, thank you for responding, I too live in London. If I manage to arrange the treatment I will keep the thread updated. It would seem the Bath hospital is up for it but I suppose I have to convince my GP of the benefits.

My symptoms began shortly after an accident in November last year and I was not diagnosed or treated until the end of March this year. Physio has helped my injured leg and foot but I'm afraid the aches and pains are getting worse in some areas. I am also experiencing a spreading of the disease to other parts of my body. I am sure I need specialist help which I do not seem to be getting at the moment.

Hi Fisherman

Have you looked into the INPUT pain management programme at St Thomas' Hospital?

I haven't been to any pain management programme but I think it might help to attend one.

KimA

Hi Kim, I haven't looked at St Thamas's but will mention it to my GP, thanks for the suggestion.

Thank you Kim.

I went to the GP about my condition not improving (CRPS) and we discussed me going to the specialist hospital in Bath, Somerset for treatment there including two weeks as an inpatient. This is where the UK's leading authority on CRPS is based.

" Good idea" the doctor said "But I cant refer you there until all other avenues have been gone down, the NHS Commissioners rule." My doctor at least agreed the probable 2nd best alternative was to send me to the St Thomas's hospital and pain clinic in London. I await an appointment. My doctor said it will be them that could refer me to the Bath hospital if they cant help me enough.

My doctor did give me another pill to try and it gave me the best night's sleep I'v had since last November. Pregabalin 75mg twice a day. It is definitely taking much of the small annoying pains and aches away.

John.

This was posted on my Facebook by RSDSA. I provided a link below.


"Research at The Min showcased on the BBC's the One Show
By LJGillespie | Posted: May 14, 2014

Research at The Min showcased on the BBC's the One Show
A city centre hospital has appeared on the BBC’s the One Show.

The Royal National Hospital for Rheumatic Diseases, known as the Min, featured on the show on Tuesday night to highlight groundbreaking research taking place at the Bath hospital into pain management.

The Min is currently undertaking a trial using a virtual reality system called MIRAGE, short for Mirrors and Genius, developed by Dr Roger Newport of the University of Nottingham, to understand if visual illusions can have an effect in reducing pain and other symptoms of Complex Regional Pain Syndrome (CRPS)."

http://www.bathchronicle.co.uk/Resea...ail/story.html

Thank you Jim, I missed the program I'm afraid. I would love to see it if anyone knows how that can be done or if it is on again. John.

Sorry, I'm from the states, can't help you accessing the program. Perhaps if you call the network someone can provide info or even a "quicktime" file for viewing.

My wife broke her wrist 11 years ago and never fully recovered, acquiring RSD in her right arm, then spread throughout. One doctor did perform mirror treatment on her and she did not like it at all. Which sounds bad but most certainly means something substantial. When she saw her arm in the mirror pain followed immediately. She quit the treatment. I wished she would have followed through, but that is easy for me to say.

There is plenty of research on this subject and I think it is worthy to pursue. Me personally, I think "Phantom Pain" is someways similar to RSD. What the link is I'm not sure but both conditions seem to be in the same ball park.

Thanks again Jim.

I have found it on 'BBC Iplaya' (Sorry I cant post live links yet, I'm too new a member)

If you Google 'BBC Iplaya' and search for 'The One Show' Its the one on the 13th May.


I don't know if anyone outside of the UK can get it without using 'Expat Shield' or something similar. (Gives you an English IP address.)

It is about 19 minutes into the program but you can fast forward the program.

John.

It's iplayer link is here http://www.bbc.co.uk/iplayer/episode...-show-13052014

Having watched it I'm not impressed, they tried it on guy who only thought is hand felt larger, sometimes my hand swells to twice it's size why didn't they use it on someone who actually has swelling. It only works while your hand is in the box, bit hard to carry on of them around with you or buy one for home use.
Much better to use a table at home stand a mirror in front of the injured hand so it reflects your uninjured one them have the good hand do the exercises and your brain sees the injured one doing them as well and thinks no pain so will start to move the injured one as well.

Totally agree here. Neuroplasticity is no joke.

Really early on after diagnosis I "chanced" upon a special on phantom limb pain for war vets on TV, saw the RSD similarity, did some research, and started mirror therapy immediately. 10 minutes on the hour, every waking hour possible.

It really really helped me do movement and desensitivation/massage techniques where I otherwise couldn't bring myself to tolerate it. Most of my right leg was an atrophied, deep purple swollen mess. Hard to look at and think about healing, or anything positive at all for that matter.

Fisherman10,

Sorry to hear that you also have RSD. I hope you can find a treatment that works for you soon.

I'm 19 and in the UK. I've had RSD since I was 12 years old and it affects my left leg and right arm. I also have numerous other health issues including POTS, EDS, Dystonia (RSD related movement disorder) etc.

I haven't been to Bath hospital for their inpatient programme however I DID go there for the initial consultant to look into the programme. All of the staff I saw were lovely, they listened to mine and my parents concerns (I was around17 at the time), and they didn't rush me which is always good :)

The reasons I didn't go onto the programme was 1) I was studying big exams at college and couldn't afford time off 2) It was a long way away from me (3 hour journey) and 3) I didn't think long term it fitted round normal daily life. They explained to me at the consultation how I'd need to 'fit' activities etc round when I felt best for the rest of my life or while I had RSD. At that time for me, I was better in the evening and it was totally impossible to fit college, exams etc around that.

I don't want this to put you off getting the treatment, personally I think it sounds a great treatment option in helping you cope with things IF you can fit it round your life.

I had good results from the inpatient programme at Great Ormond Street. Its for children but sounds similar to the one in Bath. I went for 2 weeks and had physiotherapy which got me back walking (I'd spent 12 months in a wheelchair before this). I also had input from psychologists to try and help me 'cope' with things. Not going to lie, it was TORTURE and no way am I 'cured' but in the long run it was worth it.

I hope if you continue to go down the Bath inpatient route it will be successful for you. I know the NHS doesn't always fund things, which is always a battle. :rolleyes:

Good Luck and if you have any further questions, feel free to ask me.

Alison

Hi Ali and thank you for posting and the heads up. It is a confidence boost for if I ever get to Bath too.

After more than a week I phoned St Thomas's and guess what theyve never heard of me. Back to my GP to be told he sent off the referral but agreed to do another one. I presume he forgot!

All the best and I hope you cope well with your CRPS, John.