Becoming an Oliver McGowan Trainer

Owen Smith, Mentee with Inclusive Change

Content note:This post discusses the death of Oliver McGowan, including references to medical treatment without consent and its fatal consequences. If you think this might be difficult to read, please take care, or feel free to skip ahead to the section on Oliver McGowan Mandatory Training.

Two months ago I had the opportunity to train and become a certified Oliver McGowan trainer with JSI Training - specifically, as an ‘expert with lived experience of autism’ - which now enables me to help deliver webinars to NHS staff for Oliver McGowan Mandatory Training on Learning Disability and Autism.

In this blog post, I’m going to share a little bit about Oliver McGowan’s story, the importance of training such as this and my own experience working with JSI Training and Inclusive Change.

Who was Oliver McGowan?

Oliver McGowan was only 18 years old when, as a result of a string of doctors ignoring key care instructions and misunderstanding behaviours relating to autism and learning disability, he passed away in intensive care due to severe brain damage after being administered anti-psychotic medicine neither he nor his family consented to.

Oliver was diagnosed with mild hemiplegia, a mild learning disability and focal partial epilepsy, secondary side effects of a meningitis infection when he was younger; he was later also diagnosed with autism.

After multiple hospital visits for seizures, it was concluded that anti-psychotic medication caused his condition to decline considerably - something that was documented multiple times by psychiatrists in his care.

However, during another admittance to hospital months later, Oliver was once again given antipsychotic medication; despite what was documented on his previous reactions to similar medicine, and an explicit lack of consent from both family and Oliver himself.

His condition declined rapidly, and after an emergency MRI, it was made clear that he had suffered severe brain swelling (a rare side-effect of the drug …) and was now entirely paralysed. He passed away days later in intensive care, on 11th November 2016.

It is believed that a better understanding of autism and learning disability could have prevented Oliver’s death - that much of what led doctors to decide on Oliver’s treatment were likely normal behaviours of distress in such a frantic, discomforting environment such as a hospital.

That’s why, since 2016, his family have been campaigning for a deeper knowledge in the care of individuals with autism or learning disabilities, to prevent such tragedies occurring again.

Their story has now led to mandatory training for all NHS practitioners, led by those with lived experience in autism and learning disability.

This is only a brief overview of Oliver’s story. If you want to read more, and hear about the work that his family have been doing, here is a link to their website: https://www.olivermcgowan.org/

What is Oliver McGowan Mandatory Training?

Oliver McGowan Mandatory Training was developed with the purpose of ensuring all NHS staff receive education on learning disability and autism. With this knowledge, health and social care staff are better equipped to provide suitable care for disabled individuals and those on the spectrum, and unnecessary deaths due to ignorance, misunderstanding and poor communication can be avoided.

Held either online or in-person, training sessions are mostly carried out by ‘experts with lived experience’ - meaning they are led by individuals with either autism, learning disability or both. This gives NHS professionals the opportunity to hear first-hand from those who will be in their care, and ask appropriate questions to deepen their understanding.

Practitioners are encouraged to ASK, LISTEN and DO when supporting those with autism and learning disability:

• Asking patients themselves, along with carers and family members about opinions regarding treatment.

• Listening to everyone involved.

• Doing something with the information received and working together with patients and carers to decide on the best treatment.

The impact of training such as this cannot be understated.

It is shocking how little is still understood in health and social care settings on the ways that autism and learning disability present, and how practitioners are to respond and treat those they support.

If professionals would have been informed on autism and learning disability, Oliver, and many others like him, may still be alive today.

My Experience Becoming a Trainer

After hearing Oliver’s story and receiving an opportunity to become an ‘expert with lived experience of autism’ myself, I felt it important to take up the offer.

Not only do opportunities like this provide a sense of fulfillment and justice, they also open the doors for regular paid employment to those who otherwise would find it difficult.

I was lucky enough to receive training with JSI Training to deliver Tier 1 webinars.

To do this I had to attend an example webinar myself, receive online training and help lead my own session as an autism co-trainer.

The training consists of three separate parts: an e-learning course, a live webinar and your own final presentation. Luckily, everything was online, meaning it was very easy to fit into my schedule and around my varying energy levels.

Before attending the live training webinar, participants had to make sure they completed the online learning.

This was a simple course, teaching about Oliver’s backstory and the importance of the training. It took me about 2-3 hours to complete, and mainly consisted of videos presented by certified Oliver McGowan trainers, with a handful of small interactive questionnaires throughout. The course itself is actually what is shared with NHS professionals, and so by completing it as a trainer you leave with a sense of what knowledge individuals have before you even meet them.

Once completed, I was able to join the webinar. This was around 2-3 hours long, held entirely online, and fairly relaxed.

Normally, groups enter this training as a pre-established ‘trio,’ who they will work with when presenting webinars once certified - this trio is made up of one autistic co-trainer, one co-trainer with a learning disability and a facilitator. However I joined the training as a sole individual. Whilst this did make things slightly confusing, those who were hosting the session made sure to find me a place to slot in and I was able to follow along and contribute.

After the training, participants are tasked to present their own Tier 1 Oliver McGowan Webinar. As you might have guessed, this is normally carried out by a pre-existing ‘trio’ who you initially entered training with, but my hosts kindly set me up with some other solo trainees. I was then given around a month to prepare.

A few weeks went by: I gathered an audience, I read and re-read through the script I was given, I prepped what I was going to say, but I still didn’t really feel ready to present. In fact, half an hour before the webinar was set to start, I ended up in an almost-meltdown. As I went to press the ‘join meeting’ button, I felt my brain freeze over. Fortunately, schedules got mixed up and I had an extra 45 minutes to warm up before the session began, and, although I still didn’t feel ready, I got it done.

It was tricky: I stumbled through my sentences, I skipped over parts of my script without realising and I was so incredibly uncomfortable (what are you meant to do with your face whilst you wait for responses in a video call?), but I did it, and I got some great feedback afterwards.

Two weeks later, I ended up receiving my certification as an Oliver McGowan Trainer, delivering Tier 1 Webinars as an ‘expert with lived experience in autism.’ That’s a very wordy title.

Now, I can help build awareness and understanding among NHS staff in how to treat and respond to autistic individuals, using my own experiences as an example.

Support from Inclusive Change

Throughout the whole process Owen was supported by mentors from Inclusive Change. We know that young autistic and neurodivergent adults often face exactly the kind of misunderstanding that this training exists to address - whether that's in healthcare, education, or the workplace. Our mentoring programme for young adults is built around the same principles: listening first, working alongside people rather than deciding for them, and using lived experience as a foundation rather than an afterthought.

If you're a parent, carer, or organisation looking to support a neurodivergent young adult through a difficult transition - whether that's into employment, further education, or simply navigating systems that weren't designed with them in mind - we'd love to talk.

If you'd like to find out more about our mentoring support for young adults, take a look at our website mentoring page or drop us a line at [email protected].

Thank you to JSI Training 

Thank you to Izzy, Jax and Sibelle from JSI Training for welcoming me to the training course and I am very much looking forward to finding my role in a trio as an expert with lived experience as a result of their support and guidance.