I had the rather odd experience this evening of drafting a written response to a call for evidence that is nothing to do with my day job. I work in policy so it’s a bit surreal to be writing something in my own capacity, simply as an interested member of the public.
The response was to the Westminster Commission for Autism’s call for evidence on access to healthcare. I have quite a lot to say about that, after a number of interesting experiences! (To be fair, most of my interactions with healthcare providers have actually been quite good. But the call for evidence wasn’t asking about the positives.)
I don’t think I will ever forget the morning I spent at the Sussex Eye Hospital, effectively in the middle of a building site. The noise. Sitting in corridors because there were no waiting rooms. Being moved constantly because everyone else had brought a companion with them and they wanted to sit together. Not able to speak by the time I got in to see the consultant. Not able to process what he was saying. The consultant not even noticing that I couldn’t…
This was post-diagnosis. I’m not sure if my autism was mentioned on the referral. If it was, it was ignored.
And don’t get me started on appointments that can only be made / changed via telephone.
But they also asked for recommendations. And for someone who does this for a living, that’s a question that is always welcome. So here are my thoughts in response to the question about recommendations you would make to Government, local authorities and the NHS to improve access to healthcare for people with autism:
- Put a note on computer systems about diagnosis so a person with autism doesn’t have to explain their condition whenever they see a new healthcare practitioner
- A statement about the impact of autism on the individual and any adjustment or special arrangements that the individual needs in order to access healthcare to be placed on medical record with GP
- Make it clear in referrals that the person being referred is autistic and, where possible, what that means for the individual
- Consideration to be given to appointment times- such as early appointments to minimise anxiety / risk of delays – and whether standard length appointments are sufficient
- Healthcare settings to have quiet and non-stimulating areas of waiting rooms to avoid sensory issues
- Allow appointments to be made / changed through a variety of different channels
- Availability of someone (possibly through a volunteer service) to provide support to individuals if needed when accessing healthcare
Now I just hope they don’t adopt the ‘do nothing’ policy option. I quite like that one when I’m the policymaker. But, in this case, I don’t think it’s the one I’d suggest…
(If anyone else is interested in responding, details of the Commission can be found here. They want responses by 2 May 2016.)