The National Institute for Health and Care Excellence (NICE) has launched a number of new proposals for information that GPs and health decision makers should collect. This includes a proposal for all GP practices to set up registers of which patients are on the autism spectrum.
This is a big step forward for our Autism diagnosis crisis campaign which called for GPs to collect information on how many autistic people are known to them. We have also been working closely with the Royal College of GPs Clinical Priority Group on autism to get the health service to agree to this idea.
This proposal would mean that, when a person is diagnosed as being autistic, this would be put on their GP records. At the moment, this does not always happen. This is important because many GPs do not know how many of their patients are autistic.
Many autistic people tell us that they find it difficult to go to their GP because they do not feel that their doctors understand autism and the surgery environment is not accessible. This register could help make sure reasonable adjustments are made.
The Government has also recognised that autistic people currently face unacceptable health inequalities. Knowing which of their patients are on the autism spectrum will help GP practices stay in touch with their autistic patients to ensure their health and wellbeing.
It is important to remember that you are allowed to see your GP records, to know what has been recorded about you. We know that people can worry about their autism being recorded. However, this article from Robyn Steward explains some of the reasons why it is a positive thing.
We think it is really important that this proposal is agreed to by NICE. We will be responding to the consultation to say this and you can too.