Wednesday, 16 October 2013

Disease Support for Patients

I talked to another patient last week after attending a “Living With Arthritis” program. The topic was access to helpful services and courses for people with Rheumatoid Arthritis (RA) – services like physiotherapy, occupational therapy, counselling and self management courses.

The course leader said that these services are accessible - and obviously we had found our way there. I said “That’s not exactly true. You’re assuming that doctors and rheumatologists mention these services and programs and/or send people to them for help”

Doctors are the one point of contact that all of us with RA have in common whether we are long term patients or newly diagnosed.  In my reality the doctors are too busy and these referrals are often missed or felt to be unnecessary. People who use what are called allied health services are usually savvy patients who find things out for themselves by searching, through peer to peer mentoring, or through referrals by exceptional doctors.  The newly diagnosed patients in the discussion agreed completely - they did not get those referrals.

As my new friend said “Patients don’t know what they don’t know, and they don’t find it out from the doctor.” Even a simple instruction such as “Contact the Arthritis Society for helpful programs” is often not given.

It would be great if there were a summary of services that 'may' be of use to patients with inflammatory arthritis (depending on need) as well as a short list of online sites where they would be unlikely to get bad advice.  If that existed it would at least give the doctors one simple uncomplicated message to deliver about the care that goes on when we're not seeing them. Isn't that the other 8,765 hours in the year?

There are clinics in the world where services of many types of professionals are delivered under one roof. Dr Irwin Lim from Sydney, Australia has such a clinic called BJC Health and he blogs as well so that's another resource where we can find advice and perspective. 

                                                                 Also in Sydney

One of the main benefits I noticed after seeing other team members like physios, nutritionists and therapists was that it seemed a lot less necessary to see a doctor so frequently. Perhaps that had something to do with my improved confidence that my actions were having good results.

In my first years after being diagnosed with RA I had a lot of anxiety. It's a relief that it has lifted and it's due in part to the encouragement of non-medical providers.

Click #rheum chat for a recap of some of the conversation from Sunday about access to care.

                                      RA is not good for your feet

1 comment:

  1. I think this is a really good and valid post Annette. For e.g I was only referred onto an OT once I had damage in my hands. Surely prevention is always better than cure. I see many people who have never even had and OT mentioned to them and they have bad damage already. I think I standard list for each Rhematology unit, to be given to each newly dxn patient would be a very good and useful idea. No one knows what this disease is really about until they start living with it, it's a learning curve for sure.