NHS doctors “Don’t Trust Me”

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A Newcastle University student has hit out at the barriers people with autism and learning disabilities can face when heading to the GP.

Lauren Gilbert, 21, is disability officer at the university's Students' Union. They are autistic, and also have diagnoses of ADHD and Long Covid. They said that when doctors see the word "autism" in medical records, the change in manner can be "blatant".

Lauren's testimony comes as both the North East Autism Society (NEAS) and Healthwatch Newcastle are looking to investigate how the health and care system works for people with autism and learning disabilities. NEAS is soon to launch its Everyday Equality campaign highlighting how unequal access to healthcare is among the reasons for estimates that autistic people have a mortality rate 51% higher than in the wider population

Meanwhile, Healthwatch Newcastle are running a survey to find out how GP surgeries meet the needs of those with autism or learning disabilities - and how many people with those diagnoses are aware that they are able to ask for "reasonable adjustments" to help access to services under equality law.

Lauren said: "It can be very blatant. The appointment starts off fine, the doctor looks at the screen, they see ‘autism’, and then they look back at me and instantly start talking to me like I’m a baby. Some doctors appear to assume that I don’t have the capacity to understand test results, and don’t trust me to be able to say what I need. They tell me things are all in my head and I’m just a worrier."

Other barriers to healthcare access for these groups include the potentially overwhelming environments - with bright lights and noise - difficulty communicating over the phone, and if someone needs support in unfamiliar environments.

According to Mencap, 1,200 people with learning disabilities die needlessly each year. Campaigner Paula McGowan, a Bristol mum, successfully called for the introduction of mandatory training for NHS staff in looking after those with autism and learning disabilities following the death of her son Oliver in 2016. Oliver died when doctors gave him antipsychotic medication against the family's warnings.

Lauren welcomed the improved training, saying: "That training is essential. But it’s also about attitudes. Healthcare should be a mutual conversation, but it’s very rare that you get that experience. I wanted to be treated as equal in conversations about my health and I want to be trusted that what I say can be believed, instead of being made to feel that I’m wasting doctors’ time and shouldn’t be there."

John Phillipson, chief executive of the North East Autism Society, says: “Our Everyday Equality campaign is being led by autistic people. It’s vital we hear about their lived experience so organisations can improve access for everyone.”

I can't say it's done me much good but when I go to see a doctor I mention AASPIRE, give them a printed copy of it's "Healthcare Toolkit", and a one-page list elaborating on how it best applies to me. (And I usually also give them a printed copy of the "Comparative Pain Scale"—though I have not found a good, permanent Internet source for it so sometimes I have to go searching.)

But, like I say, I can't say it's done me much good. Most doctors ignore the stuff. It is, however, great when one does try to adapt their style for me. I especially really like to get stuff in writing.