Tuesday, October 03, 2006

How to Manage Cancer (and other long term conditions) - An introduction

There's a quick answer to this - go on the 'Expert Patient Programme website'. The website is understandably slightly rubbish as they don't want to give away the course/programme/skills on it. All is not lost, as I've now got eons of time to spare as it looks like I'm not going back to work for another 6 months, just carry on reading!

I've talked about the Expert Patient Programme before; I was lucky enough to encounter it as I work within the NHS and signed up to it after a brief period of anxiety/depression. It's the best tool or system that I've been taught that's enabled me to deal with not just cancer but life itself. It's different from a 'self help group' as it's much more directed - all people with long term conditions or illnesses are taught skills together, in a group of about ten, over six weeks. Little comparisons are made with other participants (a negative experience I've had elsewhere) - as there is only a two minute slot right at the start of the course where the participants disclose their 'condition' and the difficulties it brings. The self management course is taught by two tutors. One of which is 'regional' from the Department Of Health (until it was privatised recently) and another is 'local' - a volunteer from the local community (comme moi) who's been on the four day training. Both tutors have to have a 'condition' themselves.

Primarily what I don't like about it (the programme) is it's secrecy. It's been 'copyrighted' by Stanford University in the USA, so as 'tutors' we are not allowed to duplicate the material. This gives it the impression, of when you first come into contact with it, of it being like a cult, which I used to joke about when I first did it. You get a glimpse of that on the website - people saying how wonderful it is, but not specifically how or why. I hope to address that here.

When I have the comptuer skills necessary - if Mr P can do this computer lark then I'm sure I can - then I'm going to try and make an accessible version of the programme on the web.

The 'course' is really an 80 page script which the tutors read from, based on about 25 'charts' - which are flip-chart size with about five bullet points each normally.

Chart One - is a course overview - displays in chart form the different skills and areas we learn:
-Overview of self-management and chronic health conditions
- making an action plan [a key part of the course which is taught at every class)
- Relaxation/cognitive symptom management
- feedback/problem solving [covered in 5/6 classes]
- anger/fear/frustration
- fitness/exercise
- better breathing
- fatigue
- nutrition
- living wills [don't like this bit]
- communication
- medications
- making treatment decisions
- depression
- informing the health care team
- working with your health care professional
- future plans

Chart Two : Responsibilities

1. Come to every session
2. Ask anything you want
3. Maintain confidentiality
4. Do your homework
5. Give new activities at least a two-week trial
6. Make and complete a weekly action plan
7. Call your classmate weekly

Chart Three:

Self-Management Tasks

1. Take care of your chronic health problem
2. Carry out your normal activities
3. Manage your emotional changes

The script for each of the 2.5 hour sessions is about 15 pages long. But will Tattontastic have the stamina, courage and skills to publish? Watch this space...


Phil said...

But will the readership have the endurance to read it?

tatton said...

Very funny. Yes I had thought of that. What I want to do is have categories to put entries in - like Joella and Blaglady do. Except mine will include 'dull'.