Sam's Progress in Pain Management

Dave Barton, a senior Nurse Lecturer in Wales (UK) recounts the story of his son, Sam's, experiences at the Bath Pain Management Clinic and how he regained control of his life after 3 years of constant pain from CRPS Type 2 (Causalgia)

"Sam has just finished a 3 week residential course in Bath - a Pain management course for adolescents in Chronic Pain. This is a well thought of and well know programme here in the UK. Each child and family is carefully screened by the team prior to acceptance - a key point being that they enter the programme knowing that it will not cure them or take the pain away - but may help them to live a more normal life. The youngster attends the course with one parent resident with them. So here is a resume of Sam's visit, together with his Mum, Jan, to the Bath Pain Management Course for Adolescents...... I posted this on the SKIP site but wanted to share it with you as well." David Barton

The Bath Experience:

Well it been a really funny (peculiar) 3 weeks. The Bath Programme does NOT set out to cure Chronic Pain - it sets out to help sufferers manage their pain. Sam was one of six adolescents - all for various reasons having to live with chronic pain. Each youngster had a parent with them in residence on the course. The programme delivers lots of stuff on how to pace, how to improve your general level of health and how to come to terms with the reality of long term pain. In that first week it seemed that many of the kids simply didn't want to be there - and found it all very hard to talk, do the exercises (gym every day) and really make any headway. By week two the group had gelled together and, although each of the youngsters had at least one day when they were really ill, they all began in different ways to make some personal new achievement. When Sam decided to get his hair cut and remodel his image the Clinical Team told us that they always expect to see at least one of the youngsters do this during the course. Week three slowly unravelled to its end last Friday (February 2002).

Let me tell you about the final Friday… no perhaps I will go back to the beginning to set the scene.
When Sam went to Bath it was with a degree of cynicism; he was not one to talk about his pain, he did not like doctors and health-care people as a rule. His long hair covered his face and he would hide behind this when presented with challenging situations. So, three 3 weeks later I watched with awe as Sam stood in front of a room packed with adults, clinical professionals and his new found girlfriends. He spoke out clearly of his aims to improve things for himself - stated what he wanted and how he could negotiate this - and made us all laugh out loud at his antics on the course. He looked taller, confident and pleased with himself - he had been in the limelight and was enjoying it to the full - he was without doubt a different young man to the one I had taken to Bath three weeks earlier.
The kids all cried at having to leave each other - they found a new sense of belonging after spending three weeks with people who understood; they were with peers, all with personal experience of pain. Sam is still in pain; but he has a plan and a direction and feels more in control. He has come home with a wish to go back to school - pacing himself - and he wants to keep up his daily exercises.

I have a lovely image of the six young people together - all in their T shirts emblazoned with the slogan - "Destined for Greatness - But I'm Pacing Myself"...

And now we have to catch the moment and not let it pass or fall back into bad ways.

Sam now arranges his own sleep schedule. He knows that the following day he must achieve certain targets and that it is up to him. He is less inverted - waking in the morning - having a fuller day of activity and thus more tired at night; despite pain sleep comes to him earlier.

The Bath Project works not just by teaching - but by taking the child and one parent out of their normal environment it totally removes all the normal support mechanisms; the easy lines of resistance. Children and parents are forced into rethinking; into finding new solutions. It is tough - it results in tears and distress - but it was a pleasure to meet my new son Sam on Friday - and I was immensely proud of him.

As I reflected on this on Friday night - Sam saying good night to me -limping off to bed with a glass of milk, a packet of crisps and his copy of Lord of the Rings - I thought back to a night two years earlier, when Jan and I sat with Sam on the stairs - despairing as he wept in pain. We couldn't go up and we couldn't go down; his brothers were also distressed and we were a family in crisis. After Sam's course, for the first time in a long time, I slept well.

We have come a long way...

© David Barton
2002

Dave Barton is a senior Nurse Lecturer in Wales (UK) who lists pain management among his speciality subjects. His 14 year-old son, Sam, gave him special reasons to be interested in chronic pain, because he has been in pain for 3 years with CRPS Type 2 (Causalgia). Dave also runs the SKIP website (Support for Kids In Pain) which we highly recommend for children and young people who have RSD/CRPS or other chronic pain conditions. SKIP is a lively site, geared to kids, and includes a chatroom (parents keep out!)

For more information about the Bath Pain Management Clinic click here.