Did you know that new National Institute for Health and Care Excellence (NICE) guidelines published this month recommend that GPs set up registers of which patients are on the autism spectrum? Many people are surprised that this is not something that already happens as standard but some people might have concerns about what this means.
Many GPs already record if a patient has an autism diagnosis but the change in NICE guidelines should mean more consistent recording of this data. On a local level, statutory services in Dorset, Bournemouth and Poole jointly commissioned the Voluntary Autism database in 2013 which aims to capture statistical information on the local population of adults on the autism spectrum. The information from the database is used to help shape and develop services to better meet the needs of people with autism in the local community. For more information on the voluntary database see: http://autismwessex.org.uk/autism-database
The NHS already uses data collected from medical records to review and develop services. Patients can view their GP record and they can also ask for any incorrect information to be removed or amended. Many GPs now offer patients access to their medical records online however if you are unsure how to access your medical records you can speak to your GP surgery and they should be able to help you with this. There is sometimes a charge for requesting physical copies of medical records but it is free to view online medical records. Patients can also ask that any information identifying them as an individual isn’t used for any other purpose than their care and treatment if they would feel more comfortable with this.
It is hoped that GPs recording when a patient has autism will help them make reasonable adjustments within their surgery to support individual patients with their appointments. Each person with autism is different so might benefit from different adjustments. You may want to explain to your GP what would help you to get the most out of your visit. Some examples of reasonable adjustments include:
- Having a longer appointment so that you have time to discuss any concerns and process information
- Having access to a quiet room or being allowed to wait elsewhere if the waiting room is busy
- Having the option of an early or late appointment at times when the GP is more likely to be running on time so there is less chance of your appointment starting late
- Having your GP write a brief summary of what you have discussed and what they have advised for you to help you remember after your appointment has finished
The wider benefits of data recording should make health services more accountable for the services they provide to people with autism. It is also hoped that better data recording will help gather information to improve understanding of autism and if, for example, that people with autism are more prone to having some other health conditions. Increased understanding should help health services review and develop their practice and services so that they are more effective and better meet the needs of people with autism.
The National Autistic Society supports the change and hopes it will help address some of the difficulties people with autism can face with accessing health services and getting appropriate support. For more information see http://www.autism.org.uk/get-involved/media-centre/news/2017-08-03-nice.aspx