Have your say on mandatory training for health care staff in autism and ID by 12/04/2019
- Feb 18, 2019
- 3 min read
My teenage son Oliver was a vibrant young person who loved life and life seemed to love him. He was incredibly able passing all his school GCSE and BTEC examinations. He was in training to become a future Paralympian and was playing in the England Development football squads. He was fit and healthy and yet he is dead. We believe that Oliver’s death was highly preventable.
If the doctors and nurses were trained to understand how to make reasonable adjustments for Oliver (someone with Autism and a mild learning disability), they would have known how to adapt the environment to meet his needs. Therefore, no need to use a “chemical restraint” and he would not have had the NMS reaction to this type of medication.
When I arrived in Australia straight after Oliver’s inquest I sat down one day and wondered how on Earth this could possibly have happened to Oliver. It then dawned on me that the reason we had lost Oliver was simply because Doctors and nurses in the UK do not have any training in autism and learning disability awareness. If doctors and nurses would have had the training to support Oliver's medical, social and emotional needs effectively, they would have known how to adapt their communication, using humour to settle his anxiety in a crisis, and de-escalate the situation further.
I strongly believe there needs to be a culture change in the way people with Autism and a learning disability are treated by NHS doctors and nurses. This needs to be led from the top down. It is not acceptable that people who have autism and learning disabilities die for no other reasons than their health care needs not being met. I believe that we must do everything in our power to prevent future deaths like Oliver’s from happening again.
So I decided to start a petition in parliament asking for all medics to receive training in understanding and treating people who have autism and or learning disabilities when needing medical treatment. I launched my petition on social media and very quickly gained 51,000 signatures. Petitions must raise 100,000 signatures to be considered for debate. I was gaining a lot of support from the public, doctors and nurses. I then received an email, telling me that Oliver’s petition was being called for debated in parliament. This was unusual and raised a lot of interest from the media. I suddenly found myself being interviewed for the BBC live politics show, BBC news and several other news stations. Oliver’s story was reported in many newspapers.
I was then invited to attend several meetings with the chief executive of the National Health Service to discuss the training I was campaigning for. This again gathered further media attention and I found myself being interviewed for news and television shows again.
Oliver’s petition was debated in Parliament in 22 October 2018 which gained cross party support. Following on from this I have been invited to support the NHS in developing a training programme for every person who works in the NHS to have different levels of autism and intellectual disability training awareness. I have requested the training to be put in Oliver’s name as his legacy.
The Consultation for this training has now been launched by the government. They have invited everybody to be involved. For the training to be effective we need everybody to contribute. This training could save lives and at the minimum change the health care outcomes for autistic and intellectually disabled people. Please have your voice heard and join in this vital consultation.
I’ve been trying different browser driving games lately, and Drive Mad stands out because the vehicle physics actually make each level feel different. Simple idea, but surprisingly challenging.
Reading this is heartbreaking. It really highlights why training is so important in this field. Speaking of sharing ideas, I used Hear me out the other day to sketch out a concept and it made the process so much easier.
I keep coming back to the phrase “led from the top down” — without leadership backing, frontline staff won’t feel able to slow down and make adjustments even when they want to. It also feels like families end up doing the educating in the middle of a crisis, which is unfair and unsafe. Weird comparison, but it reminded me of how StyleLookLab talks about fitting the approach to the individual rather than forcing everyone into one template.
What really stuck with me is the point about environment and anxiety — if you don’t understand the person, you end up treating distress as “non-compliance.” Training seems like it should cover practical stuff like sensory overload, clearer communication, and de-escalation, not just definitions. Side note: the idea of adapting your approach to fit the person made me think of imgg in a totally different context — changing the frame can change everything.
Mandatory autism/ID training feels like the bare minimum after reading this — the “reasonable adjustments” part is what gets missed most in fast-paced wards. I’ve seen how quickly a situation escalates when staff default to control instead of communication, and it’s heartbreaking that it can end this way. Oddly enough, this reminded me how small shifts in approach can totally change an outcome, a bit like how CaesarCipher shows that a simple adjustment can transform what you’re looking at.