On 1 August 2017, the National Institute for Health and Care Excellence (NICE) published its new proposals for information that GPs and health decision makers should collect in its Indicator Menu.

The proposals include a recommendation for all GP practices to set up registers of which patients are on the autism spectrum. Earlier in 2017, NICE ran a consultation on this idea. We shared this news and many people responded. Most people welcomed the news, many asking why it hadn't happened already. Others expressed some concern, so we felt it was important to explain more about the proposal to improve recording of autism on GP records and why we think it’s important.

Over many years of campaigning, we've highlighted how autistic people can struggle to access the support they need. Many autistic people tell us that health professionals, including GPs, do not understand autism and do not make the adjustments that autistic people may need. 

We have raised this issue consistently. For example, our campaigning helped to secure legal requirements for autism training for doctors in the Autism Act statutory guidance, published in 2010 and updated in 2014.

The Government also told NHS England in its last mandate (the document that dictates what the NHS should focus on) that it needs to tackle the health inequality that autistic people face.

We think this health inequality is wrong. It is crucial that everyone can get the health care they need, when they need it, from professionals who understand them. We are also concerned that some evidence from Sweden suggests that autistic people may be at greater risk of dying prematurely.

A lack of data in the UK means that we don’t know how the UK compares to Sweden. However, we do know that getting the right support from a GP will be key to staying healthy and well.

How can improved data recording help?

We have campaigned for several years to make sure that GPs are recording a person’s autism diagnosis on their files. Many already do this, but it doesn’t happen consistently. We believe that there would be several benefits for autistic people if all GPs did record it on a person’s file, including:

  1. Ensuring reasonable adjustments are made. If a doctor sees that someone is autistic before they come in, they should be able to make certain adjustments – for instance, trying hard to make sure that the appointment starts on time and making sure they communicate clearly (or perhaps have information available in other formats). This is no replacement for training, but it could act as a 'flag' telling GPs they need to put their training into action.
  2. Ensuring health and wellbeing. People go to the doctor for many things, and sometimes for check-ups to make sure nothing is wrong. But if autistic people don’t feel able to go to their GPs, we are worried they will miss out. We have been working with NHS England recently to promote things like flu jabs and cervical screening to autistic people, but GPs could do more by looking at their records to check if people have been offered and taken up these services. If GPs could see that lots of autistic people weren’t taking up these services, they could think about changing their communication with those on the autism spectrum. 
  3. Planning the right services. Decision makers cannot plan services locally unless they know how many people need to use them. It is hard to commission an autism service if you don’t have accurate information about how many autistic people live in your area, and this can leave autistic people without the right support available in their area. Anonymised data from GP records would provide decision makers with the data they need to plan effectively.
  4. Acting on evidence that suggests autistic people may be at risk of particular illnesses or conditions. As mentioned above, Swedish research has suggested that autistic people are at risk of dying earlier. The research identified that autistic people with a learning disability were at most risk of dying early due to epilepsy, while the second leading cause of early death in people with Asperger syndrome was suicide. Because we don’t have the data here on autism that they have in Sweden, we can’t say for sure if the situation is the same here. It is therefore harder to tell the NHS nationally or locally what specific action they should be taking to make sure that autistic people are being identified early as having particular health conditions or illnesses. 
  5. Making sure the health service is accountable for what it provides. The NHS is there to provide health care to all of us, but we know that some people, including many autistic people, fall through the gaps. If we can show that this is the case using real information, it means we can hold local decision makers to account on the services they provide – or do not provide.

What do the proposals actually mean?

We know that having information recorded about you can be worrying – and remember that you can always ask for your records not to be shared if you don’t feel comfortable. We also know that the phrase 'register' can also be confusing or concerning. However, it’s important to look carefully at what these proposals mean:

  • GP records are regularly used by the NHS to help plan services and research. The NHS depends on this information to improve services. However, you have a right to say that information that identifies you cannot be shared for any purpose other than your care and treatment. This means information that identifies you cannot be shared by the NHS if you tell them that you do not consent to it. You are also able to view your GP record and you can ask for anything that is incorrect to be removed. There is more information about how your records are used on the NHS Choices website
  • GPs would record on an individual’s records that they have had an autism diagnosis. Many GPs already do this, and other conditions people have are also recorded. It is an important part of GPs being able to build up a good picture of the individual and their health needs.
  • This would create a 'register' in each GP practice in the sense that they could search by people who have an autism diagnosis. They can already do this for people who have, for example, a heart problem, learning disability or asthma.
  • GPs could use this 'register' to make sure that the autistic people in their practice are in good health. For people with a learning disability, this information is used to invite people for an annual health check.
  • This proposal would not result in a central list of people who are autistic. But it would formalise and improve recording of autism in the same way that all other health information is used.

In a recent survey carried out by the Westminster Autism Commission, 95% of autistic people and family members who responded said they wanted doctors to have a note on their computer screen to tell them that the patient is autistic. In recent years, a similar approach has been tried to identify patients with a learning disability, after research found that they were at risk of having poorer health and of dying earlier. It has enabled the NHS to put programmes in place to tackle this health inequality and to make the health of people with a learning disability a priority. We believe a similar level attention is needed to address health inequalities faced by autistic people.

What else needs to happen?

We think this proposal is a positive step. However, it is not the only answer. It must go alongside better understanding of autism amongst GPs. We have worked to make training requirements part of the law and have worked closely with the Royal College of GPs to improve information available to GPs, including the curriculum for all new GPs.