Residential Pain Management Programmes

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  • #17407
    Anonymous
    Inactive

    Does anyone have any first hand experience of residential pain management programmes ?

    I am particularly interested in the course at Bath as this has recently been recommended to me by a consultant, but I am also interested in the ‘Cope’ programme run at the Salisbury Wessex Rehabilitation Centre as this was previously recommended by a different consultant. In addition, from my own research I did some time ago, I discovered two other places in my locality (south England) both in London. One was at the Atkinson Morley hospital and the other was the ‘Input’ programme at St Thomas’.

    If anyone has any experience of these, or indeed any other residential programmes, I would be most grateful to hear from you.

    I discovered the painsupport web-site whilst searching the web for info on these courses, and I would just like to say what an excellent site this is. I’m just sorry, and very frustrated, that I can’t sit for long enough to look at more (my back causes me most pain sitting), but am working my way through in time with a few minutes per day.

    #17408
    Anonymous
    Inactive

    Firstly there are pain clinics where they sometimes administer anaesthesia into specific areas and there pain management courses. Secondly, remember that the person who referred you beleives you are in pain. These clinics are oversubscibed and expensive so they do not send anyone who is not a sufferer of chronic unmanageable pain.
    A management course does what it says on the tin, that is ‘ teach you how to manage your pain’. They teach techniques for relaxation, exercise, the psychology of pain and how and why and where we feel pain and the difference between acute (sudden) pain signals which are there to aid survival and should be listened to and chronic pain signals which work more like an ‘engaged tone’ on a phone which can are not dangerous to learn to disregard for example, an amputee who still an feel the pain in the removed part of the body. This does not mean it is not real and they will never say this but research has shown that we are clever enough to learn to control these redundant signal by closing the gates between the transmitter and the receiver. This is also how many of the new pain medications work. I repeat that this is different to the pain we would feel if we dislocated a joint for example, that is an acute pain and is there for a reason and must be listened to.
    After 30 years of intractable pain I was referred to and completed the four week residential INPUT course at St Thomas’ Hosp. London, in January 2003. It was not easy, and is similar to a boot camp! You are not treated as patient and stay in student type, self catering accomodation. I learnt many new life skills and in a group led lecture type enviroment, learnt not to fear pain and therefore felt safe to dip my toe into a safe daily stretch and exercise programme designed totally around my individual abilities and levels of accomplishment. For example, I learnt how to sit on a chair, which may sound so silly, but beforehand, my life was so limited because of seats and sitting. Cinemas, restaurants, pubs, friends houses, public transport, clinics etc. These all required me to sit on unforgiving and uncomfortable surfaces for various lengths of time so to avoid this, I just didn’t go out or sometimes didn’t even get out of bed. Before the course, my sitting tollerance was about 30 sec- one minute. By the time I left, I had built up my sitting tollerance to at least 15 minutes.
    They do discuss medication, how and why it works,and did review and discuss my drug regime but are not there to solve your pain with drugs, injections, therapies and the like.They will discuss the sanilty of taking a drug constantly if it doesn’t actually work or take the pain away,conversely they will not tell you to stop taking a drug that works for you.
    People are usually referred to pain management when all these routes have failed. If it is going to work, one has to be accepting of ones condition and not looking for further answers or diagnosies and have come with an open mind to try anything which may improve what has now become a totally intollerable way of life. I reiterate that they do acknowledge that you have pain and that it is real which can be relief in itself. They teach you tactics on how to get back into the driving seat and live again despite your pain. Be warned this journey can be hard physically and emotionally and truly revealing and needs all the support of your friends and family if the changes you wish to implement when you get home, are to become and stay successful.
    I still have my pain, but have regained the confidence in myself and now feel that there is a chance for me to join the real world again, and at my choice of pace and at my level.
    The beauty of this and all discussion forums is that we are all entitled to our opinions and are here to record our own experiences, but I wanted you to go along with an open mind. I appreciate that maybe this approach isn’t for everyone, but at least its worth taking a peep and having the initial interview as we all have nothing to lose.

    #17409
    Anonymous
    Inactive

    Hello

    George, is there any advice you can give me to make sitting less painful.
    I find it very difficlt and would like to finish a meal pain free!

    Anne

    #17410
    Anonymous
    Inactive

    There was almost a mutiny on the first day at INPUT mainly because the seating provided for the classes was so appauling; only one step up from those plastic moulded stacking chairs. It was explained that these are the indicative of the standard of chair that we would encounter in our everyday life so unless we get used to them we would continue having problems with outings, travel and generally living and enjoying the outside world.
    We started by measuring our individual sitting tollerances, standing as soon as any discomfort was felt, mine was a max of 10-20 seconds.Then, using a timer, we built up our sitting tolerances very slowly over the period, the secret being not to try too push through the pain and to stand up as soon as it becomes uncomfortable and mobilise. Wewere all up and down like jack in a boxes, all through the day, regardless of whether we were eating, in lectures or just socialising. The timer is important, as one has a tendency to ignore those little first signs of discomfort esecially when distracted and alot of pain i spasm and stiffness setting in. We learnt to relax and listen to our bodies and I managed to sit for a good five minutes by the end of three weeks! Other tips are to sit back into the chair, not perched on the edge and if a back support if preferred when out and about, use a rolled up piece of clothing. Also to make sure that ones feet are flat on the flor, so again use whatever is available to raise ones feet, ie; bag, rucksack, books, cushions etc. When eating try and sit up at a table and use a knife a fork to avoid the slump/lean whe all get into when using just a fork. Cut up difficult food stuffs beforehand with a sharp knife so avaoid struggling ans straining with a pork chop and blunt cutlery. Eat little and often to avoid bloating which will also affect your back pain.
    Sometimes its best to rest your hands gently on the lap, rather than using armrests, this mainly applies to casual social seating as sitting at a desk or workstation involves so many other constraints of which there are numerous sites and suppliers offering products and advice and many of the larger employers offer work place ergonomic assessments to suit the individual needs of the worker, correct chair, height of work surface and/or monitor etc. ergomonic keyboards,
    I think its good to remember that our enviroment is more adjustable that we may think and to become aware of how we sit, hold a book, position our paper when writing, or plate when eating, as all these little adjustments can reduce the strain on our bodies considerably.

    #17411
    Jan Sadler
    Keymaster

    Anne

    I know just how difficult it can be to sit comfortably – which is why I wrote a little programme called Comfortable Sitting, including a tape/CD and a booklet. It’s based on the ideas in the Alexander Technique but is suitable for anyone with sitting difficulties. Let me know if you are interested. It’s £7.00 for the tape, £8.00 for the CD plus P&P.

    Make sure you have a really comfortable seat – probably a firm dining chair with a wedge on it and a back support of some kind. Sit up straight – and don’t overdo the time you sit. If you can only sit for five minutes before the pain increases, so be it.
    Never sit on in discomfort.
    Using the programme I mentioned above I managed to increase my sitting time from zero to about 15/20 minutes over time.

    People don’t realise what a handicap the lack of ability to sit can be. For instance, I can’t use a wheelchair, even though it would help me to get out – just because I can’t sit comfortably in one for long enough.

    Let me know if you think I can help.
    Jan

    #17412
    Jan Sadler
    Keymaster

    Thank you, George, for your valuable and helpful input – you must have posted at the same time as I did.

    Pacing is the key – little and often, and find out your tolerance level.

    Can’t write more – am at end of sitting time!

    Jan

    #17413
    Anonymous
    Inactive

    May I also say that INPUT at St Thomas’ did do drug reducing regimes. I successfully and significantly reduced my opiate intake, mainly fentanyl patches, morphine and diazepam with their guidance and continuing GP support. There was one or two nurses who dealt with this sort of thing, under consultant management, quite a few psychologists and physios and an OT, with talks from visiting surgeons, anaesthetists and so forth. No uniforms either hence a good, friendly, ‘non hospital’ enviroment. One works hard but after 5 all the staff leave and the unit is locked so you are then free to do as you please, go out and eat, visit the pub or friends or have visitors in the communual flat style, self catering accomodation. Most of the time I was too tired and needed many an early night!

    #17414
    Anonymous
    Inactive

    Hi
    It is so good to read some postings on sitting. I have been reading various books looking for the best way to increase sitting time. Also the programme i went on came from the tolerance point of view and it didnt help me at all. I have just read a book that suggested sit 5 mins first hour than the next hour sit 10 then 15 etc. It made feel feel really confused, and like I wasnt trying hard enough, or I was giving in to the pain too easily.
    I think like you all say I shall go back to a gentle increase and not pushing into the pain.
    You are right that not sitting well is an overlooked problem Jan. People always suggest to me if I cant walk far at a certain time I should go in the car or borrow a wheel chair but if my walking is bad my sitting will be worse at that time!
    Nevermind
    Good luck with your endevours everyone!
    Sarah

    #17415
    Anonymous
    Inactive

    I was referred to a residential pain mangement programme and because I am not able to fully care for myself eg I need help showering and dressing, they wouldn’t accept me! It made me very angry and confused, I know several people who have chronic pain and find dressing and showering a problem.
    Does anybody know of a course that provides some “care” help?
    take care Anne

    #17416
    Anonymous
    Inactive

    Can i just thank George for his posting, it explained a lot of things to me.

    I contacted my doctor about local pain management courses and he said that it was best i see him about changing my medication, as the clinic would only send me back to the gp anyway.

    I knew there was more to it than that.

    Besides, i dont want to be on addictive medication.

    Many thanks,
    Shona

    #17417
    Anonymous
    Inactive

    Two years ago my doctor told me he would refer me to a pain management clinic, and as soon as he had said that he went on to say “However, there is a very long waiting list so I don’t think I will bother”. I said I didn’t mind how long I had to wait. He replied, “No, it really is a long waiting list”.

    I saw my doctor last week and told him I am not coping with this daily pain at all and please, no matter how long the waiting list is, would he refer me to a pain management clinic.

    His reply? “You will have to ask the consultant when you see him in March because I cannot refer you to such a clinic”. He continued, “In any case they only look into your psychological state”.

    Wonderful! I don’t MIND what they do at a pain management clinic; if I only came away with one piece of valuable information I should think it would be worth while.

    I can’t understand why he spoke about referring me, two years ago, and yet last week he said he cannot do that, it is up to the consultant. Maybe I will get an answer in March when I have an appointment at the hospital.

    I am so grateful to the people who write of their experiences at Residential programmes and pain management clinics – I am learning more and more through this forum (newsletters etc) so I am thankful for that.

    Still confused though……

    Sheila.

    #17418
    Jan Sadler
    Keymaster

    The system has changed, GPs used to be able to refer patients on to Pain Management Programmes but now it has to be via a consultant, so your best bet is to ask fore a referral to a consultant – if you can afford it, it may be worth paying for a private consultation in order to hurry up the process. It would cost between £60-£100 I think.

    #17419
    Anonymous
    Inactive

    Thank you Jan for ending my confusion. I usually do pay for a private consultation and then choose to have the follow-ups on the NHS. I have to see the consultant at the NHS hospital in 6 weeks’ time so on this occasion I am quite happy to wait. However I shall bear your advice in mind and I do thank you for the response to my comments.

    Thank you again, much appreciated.

    Sheila.

    #17420
    Anonymous
    Inactive

    Thanks very much to everyone for the responses to my original posting, especially as we all have so many problems with sitting, and particular thanks to George for all the excellent info on the INPUT programme.

    Since posting I have details on another residential programme which looks as though it would be very good. This is “The RealHealth Institute”, an independent health care company in Hammersmith that set up about 6 months ago. They offer both Pain Management Programmes and Functional Restoration Programmes (can anyone explain the difference?) Each is residential and of 3 weeks duration operating on a Tuesday – Friday basis. I understand that the courses are run by the old INPUT team and led by Dr Pither. (Fenella – I’m still not sure why they all left St. Thomas’)

    I am particularly interested in understanding the differences between the above ex INPUT programme and the Bath programme – my search has now narrowed to these two and I’m trying to identify which one would be best for me. Earlier in this disscussion Sarah said the advice and approaches to pain management vary from place to place, so if you know anything about either of these two places please respond.

    George – Many thanks for all your info. I too have avoided going out anywhere for years because my pain is made so much worse by sitting, or even just from being upright for too long. I have been practising pacing at home and am gradually building up my tolerances, but am nowhere near a level to actually go out and do anything, and whenever I do I suffer severe setbacks. Thus I spend virtually all my time at home, mostly horizontal on the bed or sofa! My consultant says I am a very deserving case for a PMP, and logically I know that this is my way forward, but am nevertheless extremely worried about my ability to cope with the programme. Did you have similar concerns, and am I unnecessarily worried ? Can you give me any tips or advice on anything I can do before the course to prepare myself? One of my concerns is that I will not be able to sit/stand/walk about for long enough to listen to and partake in the sessions. Were you able to lie down at all during these? Sorry for all the questions, any info or advice much appreciated.

    Sarah – Thanks for your postings. Where was your residential course, and in what ways is your book on ADAPT different? Alas I won’t be going to Australia – much as I’d love to – I’ll struggle to make it to Bath! However if you think the book’s worth getting, can you post the details please.

    Fenella – Thanks for your response. Really glad to hear you have a diagnosis now, and hope all goes well for you.

    Anne – Of all the places I’ve investigated Bath is the only one to offer a hospital based programme with ‘care’. Some info on their courses can be found on the Bath university website (the course is run in conjunction with the uni) at http://www.bath.ac.uk/psychology/pmu. Good luck.

    Shelia – I know how difficult it can be when you are in pain, but try to keep pushing for a programme and good luck!

    Jan – Many thanks for a great website. I may be in touch for your sitting CD!

    #17421
    Anonymous
    Inactive

    Dear Sarah

    The book that talked about the ADAPT programme is called Manage Your Pain, Im afraid I cant remember the authors names as returned it to the library. However, Ive ordered a copy from Amazon (hope thats not too commercial Jan!) and it is the only one by that name on the site.

    The course I went on was a Functional Restoration Programme (FRP). I presumed at the time that it was practically the same as a PMP, but trying to take the focus off pain. Reading other posting I realise that there may well be significant differences between the two, which is why i would suggest you look into both the frp and pmp thoroughly before deciding which is for you. I didnt get to find out if the frp is similar as when I said the consultant that i had heard of pmp’s (as i wanted to know if they were similar) he snapped ‘its not a pain management programme, you wont be allowed to talk about pain, everyone else there is in pain too and you’ll all have to get on with it’!! (deep breath – I wont go down that road!!). That isnt to say that the FRP you are looking at is at all negative compaerd to the PMP, I think that was just a poor consultation experience!

    THe FRP was described as 1st week 3/4 education 1/4 exercise and by week 3, 3/4 exercise and 1/4 education. It was a intense re-conditioning if you like, and we all definately all left much more active than we entered. The aim of the course was to increase the amount of activity we managed to do and not necessarily effect the levels of pain we experienced. It sometimes felt like endurance rathner than pacing, but I may have been the only one to feel that, I dont know.

    I felt that the psychological and emotional aspects were not focussed on enough. I have found that exercise and pacing is very, very important but you also need to skills to manage the pain you have day to day, week to week. While itis important to not let pain be the main topic of all thoughts and converstaions, and put a stop to pain behaviours, the pain is infact still there and that is something we need to learn to cope with, for good long term self management.

    Sorry, such a long posting!! Hope it helps a little.
    Best wishes, Sarah

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