We must not fail people with autism and learning difficulties
Access to healthcare can be extremely difficult for autistic people and those with a learning disability. We must ensure all staff are properly trained to understand their needs, writes Daniel Zeichner
Last week, I visited a local volunteer-led group, Caring for Cambridgeshire’s Homeless, who help the growing number of
homeless people in Cambridge. I was introduced to a 21 year old autistic man with learning disabilities who is living on the streets. His safe place? Behind a wheelie bin, at the back of a shop. While volunteer interventions are a lifeline for this young man, he should be getting professional medical support from those trained to understand his needs.
In 2016, a young man called Oliver McGowan died in hospital. He was autistic, and had a mild learning disability; his mother reports that the medical staff who treated him were not trained in giving the adjustments in care that he needed. She started a petition to Parliament, calling for mandatory autism and learning disability training for healthcare workers; the petition now has over 50,000 signatures and will be debated today, Monday 22nd October.
There have been other cases like Oliver’s, and every young person who is autistic or has a learning disability and dies prematurely is a tragedy that we should be able to avoid. When Connor Sparrowhawk, or LB as he is known, passed away in Slade House in Oxford, his mother called for “an effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided”.
This is clearly a hugely emotive subject, and the examples above highlight really heart-breaking incidents; we must work to make sure that other people are kept safe after we, as a society, failed Oliver and LB.
However, access to healthcare from the start can be extremely difficult for autistic people and those with a learning disability, with seemingly simple tasks, such making an appointment over the phone, a barrier to many people.
If you are anxious about or unable to make an appointment, you’re less likely to seek healthcare when ill. You may find expressing yourself very difficult, especially if this includes discussing intimate personal health issues – physical or mental.
Many doctors and nurses strive to understand autism and learning disabilities, and to adapt their practice to suit these, but with the right training, all staff could help these people feel more comfortable, and ultimately receive better, more focused healthcare; people who are autistic or have a learning disability can have different responses to some treatments than others.
Everyone working in the NHS will see autistic people and people with learning disabilities, even if they aren’t aware of it. Some of these workers could have an inaccurate, or narrow view of what someone with a learning disability looks like, or the traits of an autistic person, due to stereotypes or unhelpful media representation of these conditions.
So all frontline staff, beyond nurses and doctors, such as receptionists and facilities managers should receive some evidence-led training, highlighting how small adjustments can hugely increase access. The development of that training should be informed by autistic people and their families.
We also need specialist knowledge. Since the coalition government came in in 2010, learning disability and mental health nursing have been the worst hit by the wider staffing crisis, struggling to recruit as mature students are likely to choose these specialties. The RCN reports that there are 40.5% fewer learning disability nurses today than in 2010.
This huge workforce pressure risks poorer care for people with learning disabilities; a commitment from the government to encourage students into learning disability nursing could improve standards of care.
The Learning Disability Mortality Review published in May found that men with a learning disability die on average 22.8 years earlier than the general population, while women die 29.3 year earlier. Autistica’s research shows that autistic adults without a learning disability are 9 times more likely to die from suicide than non-autistic adults. Mencap’s research showed that almost a quarter (23%) of healthcare professionals had never received training on learning disability, and almost half believed that was contributing to avoidable deaths.
This feels like common sense to me. We cannot risk any more cases like Oliver; this cannot afford to wait.
Daniel Zeichner is Labour MP for Cambridge. MPs will debate autism and learning disability training for in Westminster Hall on Monday 22nd October