Oliver McGowan headshot photo-outside

There is an important debate in Parliament on Monday (at 4.30pm), following Paula McGowan's petition calling on the Government to make sure all healthcare professionals receive training in autism and learning disability.

This is a chance to show decision makers why this is so important and encourage them to tackle the unacceptable health inequalities faced by autistic people. It’s also very timely, coming as the NHS is developing its Long Term Plan and the Government is preparing for the budget.

How you can get involved

We want as many MPs to attend the debate as possible and are asking them to join.

You can help make sure that lots of MPs attend, by inviting your local MP. It’s simple to do using the Write to Them website. Please tell them why you think training for health professionals like GPs, nurses and other NHS staff is so crucial.

You can watch the debate live from Westminster Hall at Parliament Live from 4.30pm on Monday.

Watch the debate 

We will also be live tweeting from @NASCampaigns.

Background

Paula's son Oliver was only 18 when he died in hospital on 11 November 2016. She believes his death might have been prevented if his doctors and nurses had received autism and learning disability training so that they understood his needs better. She has written on the NHS England website about Oliver’s story.

Paula’s petition, calling for mandatory training, has received over 50,000 signatures. 

What should happen next

The NHS is currently developing a ten-year strategy called the Long Term Plan and has announced that autism, alongside learning disability, will be a clinical priority. This is a huge opportunity to fix the problems that a lack of autism understanding causes.

Alongside tackling long diagnosis waiting times and supporting good mental health, we believe that the Long Term Plan should outline a comprehensive national training programme for all health staff in England – in line with Paula’s petition. We have included this in our feedback to NHS England.

In England there is a duty in the Autism Act statutory guidance for all health and care staff to have appropriate autism training. But we know this often doesn’t happen in practice. The Government also recently announced that it would consult on mandatory training on learning disability following a report into what the NHS needs to do to prevent deaths of people with a learning disability (called Learning from Deaths Review (LeDeR)). This review was set up following high profile campaigns including Justice for LB, which followed the tragic death of Connor Sparrowhawk in hospital after he had a seizure in the bath while unsupervised. 

We think that the Long Term Plan is the NHS’ opportunity to make sure that all healthcare professionals have the training they need in both autism and learning disability. The plan should set out a nationwide training programme to make sure that staff are trained to an appropriate level.

Personal stories 

It's vital that the experiences of autistic people and their families inform every part of this debate and remain at its heart. Below, we share Oliver and Christopher’s stories, showing what can go wrong, without training. Emily’s story demonstrates the huge difference that health care staff with a proper understanding of autism and learning disabilities can make.

Oliver's story

Christopher's story

Emily's story

Oliver's story

Outside photo of Oliver and Paula McGowan

Oliver was Paula’s son. He was an autistic teenager who also had epilepsy and cerebral palsy. He was admitted to Southmead Hospital in October 2016, after suffering seizures. Oliver’s family strongly believe that mistakes were made about his autism and staff weren’t able to understand his needs. For example, they believe his behaviour was mistaken for psychosis. He was prescribed anti-psychotic medication, despite his family saying he was allergic to it. Oliver died in October 2016 after serious complications in his care. While an inquest has found that the medication wasn’t wrongly prescribed, Oliver’s family firmly believe that better understanding of his autism could have prevented his death. Paula believes passionately that Oliver’s experiences should lead to change so that a lack of understanding doesn’t result in future deaths.

Christopher's story

Christopher was an autistic man who lived in Leeds. Christopher’s mother had battled for years to get her son diagnosed and then to make sure he got the support that he needed to live independently and safely. In particular, she had been struggling to get him the help he needed from mental health services, which had failed to recognise his autism and support him accordingly. Christopher ended up in crisis many times – often in hospital. The last time he was discharged, he didn’t get the support from mental health staff (or other services, including housing and social care) that he needed. Christopher was vulnerable. He was murdered in his own home in November 2016 aged just 24, by a man who had made it seem like he was his friend. Christopher’s mother is clear that the lack of understanding of Christopher’s needs by the health service meant that he was left without the support he needed in the community, making him vulnerable. She is asking for an independent investigation to learn from his tragic death, so it doesn’t happen again.

Emily's story

Emily Swiatek

Emily is an autistic woman who, aged 31, was admitted to hospital with a suspected stroke. Her experience shows the positive impact that having well-trained staff can have. “I didn’t realise quite how fortunate I was until I found myself being briskly wheeled down the corridors that ran from Liverpool Royal’s A&E to their CAT scanner in early April with a suspected stroke. I’d not long turned 31, and I was terrified. I babbled incoherently to the nurses, with slurred speech from my facial droop, and let them soothe my fears. When we returned back to the emergency room, they tried to get a cannula in my arm, just in case it was a stroke. It was the fifth time and I still wouldn’t let them near me (I’m petrified of needles) but this time I remembered the most important thing I hadn’t told them - “I’m autistic”. In the space of seconds, everything changed. Five nurses became two, I was asked if I needed the lights off (I did) and questions were asked one at a time, with space for me to process. I felt a little breathing space come back to me.”     

To find out more, read Emily's blog on our website from June of this year, to mark the NHS' 70th birthday.