Expert patients programme online course

I started this course 2 weeks ago, and although I would have preferred a face to face group, there isn't one in my area, and I find it hard to motivate myself to go to weekly sessions after work.

So the online course is pretty good so far. Motivating me to try short bursts of exercise, consider different ways of thinking. It's worth a try.

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  • How did you access this?

  • Hello

    This was a course that I took quite a few years ago,it was an interesting approach to the NHS and I took a great deal of useful information from it

    If you get the chance go for it nothing lost

    BOB

  • Hi rowantree, I just looked up that course and it sounds really good. I've copied someone's review of the course below coz it sounded good and thought others might like to read what this person thought. It's from the website:

    I was diagnosed with degenerative disease of the spine 6 years ago, in May 2004. I think I originally hurt my spine doing several things – one was lifting a patient at the hospital where I worked, even though I did follow the correct procedure. From then on, my back slowly went downhill, so I went to see a chiropractor who said it was a muscular problem. By July, I was in complete agony. I had an MRI scan which revealed I had cracked a disc and it had prolapsed out of the spinal column. The surgeon suggested I had an epidural. By this time, my nerve pain was excruciating. It was horrendous. I had the epidural in October and this was followed by 3 weeks of semi-relief. I then went back to see the surgeon and he wanted me to have a spinal nerve block which I had in March of the following year. This didn’t provide any relief at all. I went back to the surgeon again, and this time he said I needed a decompression. I was in agony after this and it took me weeks to walk again; it provided no relief at all.

    I went for a review in January, nearly 2 years after the initial pain. The surgeon wanted me to have fusion, but I refused. I decided to wait and see if nature would do its thing. I had given up work as I was in a great deal of pain, and during this period I began to reassess my life – I realised that I couldn’t work in the same way again. My dream was to go back to university. When I was recovering from the decompression I decided I wasn’t going to give up on this, so I applied to the University of Plymouth and got an unconditional offer. Nearly 1 year after the decompression I went back to university full-time to do a BA in Art History. I still had pain and problems with walking, but I could drive to university and walk about. But then the pain became excruciating, and I eventually had the spinal fusion in May 2007.

    In April 2010, I attended the Persistent Pain course in Taunton. I wasn’t keen on the idea of doing the course and I nearly chickened out, but I am so pleased that I did it as it made me realise that some of the negative things I’ve experienced are very common. I’ve had a couple of friends who weren’t very sympathetic about my condition, but I’ve also had a couple of people who have been absolutely spectacular and whom I couldn’t do without. I faced a lot of discrimination from some family members and this affected me quite badly. On the course, there were other people who had also experienced this kind of reaction and this was actually a positive thing because I realised that it wasn’t only me. My children, Katy, Em, Sara and Nick, have been extremely supportive of me and are very understanding when I have to change plans.

    When I recently had an evaluation with the clinical psychologist, she said that I seem to have sorted out these problems myself – and this is as a direct result of the course. Part of the course is about having a Plan A and a Plan B, and this helps with how you communicate with people – it helps negotiating with friends. Dealing with the inability to work or to live the life you previously lived, and all the changes – these are huge concepts people are dealing with. The course gave me permission to say “This does happen to people like me and to people of any age group”.

    At the end of the course, we were asked what we’d all learnt about each other – and it was because of this feedback that I applied to do my third year part-time instead of full-time. This enabled me to finish my year and negotiate my third year, and as a result I applied for my internship which I wouldn’t have otherwise been able to do. The course gave me the confidence to negotiate the terms for how I do things - I am starting an internship next term and this has been adapted to meet my physical needs. It taught me to be honest with people in order to negotiate – to tell them “I can do this, but I can’t do this”. For the first time, I actually felt that I’d come full circle and am now looking forward in my life. I am currently in my third year at university and am on target for a 1st or a 2:1 in my degree

    The course also taught me not to take on too much. For example, I used to do amateur dramatics, but I’ve realised that I can’t do everything that I’d like to do. However, I can give 100% to some of the things I really want to do. Learning to pace your activities is a very useful skill.

    One of the most useful things about the course was that it introduced me to other people who have pain, so I don’t feel as isolated as I did. It made me realise that I wasn’t alone in experiencing things that are common with pain, for example falling out with family and friends over things like changing plans and my not being able to do things. This was a huge thing for me. For the first time we were talking about how we felt – you can’t say those things to practitioners. There was a great sense of kinship and friendship. Throughout the summer I saw several people from the course and we will stay in touch and meet up again in the holidays. It is nice to know that there are others out there who feel the same as you.

    The course was absolutely superb – I really enjoyed it and would definitely go on another one; I found it very empowering. The tutors were absolutely brilliant - several of us cried on the last day! The tutors were such lovely people and we knew that they were telling us things in a very professional way, but that they also suffered from pain and so were speaking from a personal point of view. They were very good role models.

    The course also gives you permission to feel negative about your pain sometimes – there are days when I do feel negative about it, but not often. You’ve got to learn to be kinder to yourself – I learnt that you can be too hard on yourself. It also gave me empathy with other people who’ve got problems and to relate to fellow humans.

    The course made me very determined. All the care professionals that deal with me are empathetic and sympathetic, but I have learned to speak out. I realise that I have got to be proactive and get things investigated. It made me not feel a ‘victim’ of pain because I can manage it more effectively.

    I would recommend the course wholeheartedly to anyone. I would say that no matter how you feel, you should do the course because something positive will come out of it. To be honest, you don’t have to pay any money for the course and what have you got to lose? The least it will do is to get you out of the house and meet people. But you will definitely get more out of it than that.

    I met a woman on the course who is now at university as a direct result of meeting me. She said that if I could do it, so could she. It makes you feel ‘normal’ again. I think it was a brilliant course. A friend of mine phoned and said her friend also had spinal pain but didn’t want to do the course. I asked her to pass on my number so that I can speak to her and encourage her to go.

    Pain has brought me ahead and made me make changes in my life. My husband has supported me an awful lot. I’m lucky to have what I have. I am 90% positive and 10% negative, and I’m still changing for the better.

  • We covered a bit of this on my pain clinic sessions. It would be good to revisit it, epecially if it helps others to understand where you are coming from.

    Going to have a look. Although, I think there should be a course for those

    Who have direct contract with someone who has pain, and they get wired up to a tens machime to feel what you feel. They need to learn how to cope with someone who has changed and they need to explore their emotions. Its all very well teaching us how to cope and get on in life, but if others are just denying it, you are soon doiwn at the bottom again because you waste so much energy on them. And we all know how precious energy is.

    Theres also a counterweight programme run by the NHS, and accessed via the gp. It looks mainly at weightloss, but also touches on emotions, exercise etc. Your food intake is worked out for your weight and height and activity level. There are a few questions to answer and targets to make and reach, simple things like I will eat carrot sticks instead of crisps when watching tv. You decide what you do and how you use it. You get a set amount of appts but you can also have a few that are counselling appts. It lasts about a yr. But you can carry on yourself afterwards. I've lost 10lb since March.

  • Thanks for taking time to reflect on your course. I love the idea of being asked what you had learned about each other. It can be an eye opener and valuable. I did a similar course and found it very thought provoking. It was such a relief to meet others who were struggling. It was a sad day when it ended. Some of us have met up or emailed. I wished the hospital would set up a support group. I know I could have a go but it just seems too Over whelming. And just supervise the odd meeting with motivational snippets. Keep on trucking.

  • I'm feeling a bit underwhelmed by the online course now though. The first coupe were good but week 3 is a bit samey. It's got me back into tai chi which is great but I think it's a bit too generalised. There's exercises to do with weight loss and shortness of breath. I wonder if more about pain management and oming to terms with your condition may have been better.

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