The concept has been around for a while (Professor Judith Hibbard/King's Fund), but the NHS has started taking it very seriously, particularly as it saves money. It is now popping up in local clinical commissioning groups.
The reason I've raised this is whether such ideas are likely to be applied to people with autism, or whether autism will be left out (as ever). Particularly has any research been done on Activated Patients on the autistic spectrum?
An activated patient is someone who knows enough about their condition and is motivated to manage it themselves (that surely applied to a lot of people on the spectrum).
The idea is that recognising and supporting activated patients makes it easier to maintain their health. For one thing they are more likely to engage in healthy lifestyle decisions, get checked regularly, and be able to tell a health specialist or a GP when they think things are going wrong early enough for a good intervention.
Now with autism, if you don't need intervention and can appear to be able to manage without help, that is regarded as a recovery state - you don't have autism anymore. There aren't any services to go to if you think you are developing problems. The only time you are ever going to get any help is when you hit a full destructive crisis.
Why is autism different from any other condition? The idea is that people with diabetes, or debilitating arthritis or a condition that needs regular interventions, can reduce the number of interventions and get action quickly if they are informed enough to manage their own condition - activated patients. But surely many people with autism fit the label 'activated patients' ?
Trouble is there is little comprehension of autism out there. We aren't seen as capable of being activated patients. We don't get listened to by GPs if we say we are finding it difficult just now, can we have a little bit of support - we aren't seen as understanding our condition. More likely GPs don't believe in adult autism and wont even assist in referrals for diagnosis.
The activated patients concept is the worst kind of hypocrisy - it saves money. But to do it for people with autism, who only get help in a crisis, it would cost money.
So activated patients will only apply where there is a money saving element (and consultancy fees).
Yeyt implementation of an activated patuients approach to autism could benefit thousands, if it was being done for genuine healthcare motives.
