Complex Chronic Disease Program (CCDP) Patient Engagement Findings

https://twitter.com/user/status/929744877017096192

 

https://twitter.com/user/status/932351783686598658

 

https://twitter.com/user/status/932358312972181505

 

"Complex Chronic Diseases" is a brand new euphemism to me.

Obviously, they don't mean "Complex Chronic Diseases", or MS, RA, lupus would be included too. They mean "those diseases that we think are psychological".

Still, they had the guts to report the real problems patients see in their programme. That's something.

The report itself is a really good resource that summarises patents' concerns worldwide: stop psychologising us and do something that's actually helpful - give us practical assistance offer us treatment, educate our doctors!

The patients who made statements were incredibly articulate. Makes it difficult to dismiss them as crazies.

 

I vaguely remember that patients were really hopeful about this clinic, and that it was set up by someone patients trusted, but that then this person got side-lined.

I was always suspicious - the 'complex chronic disease' title smelt like a trap.

 

From what I recall, they weren't given the budget needed for the necessary appointments with the specialist, or testing. I think there was quite a waiting list as well.

Basically the entire thing was set up to only be capable of functioning like a British- or Dutch-style BPS fatigue clinic, and not as a specialist biomedical disease clinic. The actual specialist couldn't support that approach, so resigned.

 

see also this thread:
https://www.s4me.info/index.php?posts/16619/