When I was asked, “What keeps me awake at night?”, of course, the answer to that question is the avoidable death of my teenage son Oliver McGowan and how his death could so easily have been avoided.
I am a teacher who specialises in supporting children who have additional needs. When Oliver went into hospital, I naively believed that Doctors and Nurses understood far more than me about Learning Disability and Autism. It was only during Oliver’s inquest that it became glaringly obvious that clinicians were given very little formal training in understanding these diagnoses. The Learning Disability Mortality Review reported the same things.
I was very concerned, from a patient safety point of view. I also felt it was wrong, that health and social care staff were expected to support and care for autistic people and learning-disabled people without being given the skills and expertise to do so.
Because of this, they did not have the appropriate skills to make Reasonable Adjustments. They were not aware of diagnostic overshadowing and they did not know how to adapt their communication to meet individual needs. There was subconscious bias, most did not understand the laws such as The Autism Act, MHA, MCA, The Equalities Act, and the Human Rights Acts.
I had to do something in Oliver’s name and memory to bring about real change. I strongly believed that this had to be mandatory standardised training in autism and learning disability awareness for all Health and Social Care Staff.
I started a parliamentary petition which stated that I must gain 100,000 signatures for it to be debated in parliament. I was determined and worked over 13 hours every day for months. I was exhausted but achieved my goal resulting in my petition being successfully debated cross party in parliament.
In November 2019, the Government published ‘Right to be heard’ in its response to the consultation on proposals for introducing mandatory learning disability and autism training for health and social care staff.
The response included a commitment to develop a standardised training package, known as The Oliver McGowan Mandatory Training in Learning Disability and Autism Awareness. The training will draw on existing best practice, the expertise of autistic people, people with a learning disability and family carers as well as subject matter experts.
HEE and Skills for Care are coordinating the development of The Oliver McGowan Training in both health and social care. The training is being co-produced and delivered by autistic people, people with a learning disability and family carers.
The Oliver McGowan Mandatory Training will ensure staff working in health and social care receive learning disability and autism training, at the right level for their role. They will have a better understanding of people’s needs, resulting in better services and improved health and wellbeing outcomes.