Making decisions

[oldtimer]

If you are like me, you will find it difficult making decisions about the best ways of managing your RA.

I've recently found this NHS site with decision aids to help. It's hosted on sdm.rughtcare.nhs.uk/pda/

Look for Rheumatoid Arthritis - there's quite a long list of conditions and being added to all the time. That takes you to pages where you can put in your own preferences and it works out recommendations for you. It also includes information both about the condition and the treatments, although not very detailed, and I did feel that it plays down some of the disadvantages of the treatments.

I found it useful.

[sylvi]

Just so no-one gets misled it is rightcare not rughtcare. I have found it and i will take a look thank you.xxx

[helixhelix]

thanks old timer, and Sylvi for the typo correction. I've had a look and I think quite useful especially for the newly diagnosed. Although it does imply that if you make a decision your Rheumy will agree! Which I'm not sure is the case all the time? I can imagine that if I'd strolled into my rheumy the first time and said that I've decided to go for multiple therapy plus physio and steroid jabs every 3 months she'd have thrown me out the door and told me to go to the back of the queue! But interesting that they reckon up to 60% of people who go on DMARDS go into remission in 18 months. Maybe their definition of remission is different from mine, but I'm still waiting! Polly r

[Hidden in reply to helixhelix]

Yes me too - but thanks Old Timer. There are courses in managing long term conditions I know - and training for volunteers to help others too. Have you done any of these I wonder? If so are they helpful or too generic perhaps? Tilda x

[Hidden in reply to Hidden]

Oh yes and thanks to Sylvi too - I wondered why it wouldn't open! sdm.rightcare.nhs.uk/pda/

And also re Polly's comment - my consultant (and I've only met him three times) always asks me what I wish to do next. I got a bit snappy one time and said "I think that's for you to decide - it's your profession not mine?!" and felt really bad afterwards but I was flaring and it was part of a telemedicine consultation which is enough to raise anyone's blood pressure! I have done my research on several occasions and made suggestions of what I'd like to do next via my GP. He tends to agree with me and enable this to happen - although perhaps might not with the anti-tnf one! But I think it's really good now I know what it's like living with a long term condition like RA and it encourages us to do our research and feel included. x

[oldtimer in reply to Hidden]

Sorry for the typo everyone- you know how it is with these fingers - u and i being next to each other on the keyboard!

Yes - I not only know about the FREE EPP courses for Health & Wellbeing for people with long-term health conditions, but after doing a course myself, signed up and trained to be a tutor.

I find it very rewarding being a volunteer tutor and learn something from almost every course I help to run.

The course has recently been re-written and now includes a re-written section on making decisions, which is why I was looking for other examples ready for next week when it comes in week three and found this site.

I know not everybody has had a good experience on EPP courses, but I found that although I didn't learn much that was new to me - I did learn that it applied to ME, and was gradually able to stop pretending that I didn't really have anything wrong with me, and to accept help graciously instead of resenting it like mad!

If anyone wants to know more about these free six session courses, then have a look at the EPP website.