- New guidance published today to ensure health and care staff have skills to provide care for people with a learning disability and autistic people
- Oliver McGowan Mandatory Training on Learning Disability and Autism named after teenager who died in 2016 after having severe reaction to medication given to him against family’s wishes
- Training will aim to tackle health inequalities faced by people with a learning disability and autistic people, who face poorer health outcomes than general population
People with a learning disability and autistic people will get safer, more personalised care as the government publishes new guidelines for health and care providers to train staff.
The Oliver McGowan code of practice on statutory learning disability and autism training aims to ensure staff have the right skills to provide care and boost understanding of the needs of these groups of people.
It sets out the standards that providers are expected to meet to be compliant with the law and help make sure patients are kept safe.
Those with a learning disability or autistic people face poorer health outcomes than the general population, and it is crucial that health and social care staff have the right knowledge and skills to tackle these inequalities.
The training and the Code of Practice are named after Oliver McGowan, an 18-year-old from Bristol with a mild learning disability who died following a severe reaction to medication given to him against his and his family’s strong wishes.
Under the law, health and care providers registered by the Care Quality Commission have a requirement to ensure staff have the appropriate training.
Minister of State for Care, Stephen Kinnock said:
“I pay tribute to Paula McGowan OBE and Tom McGowan and their incredible campaign to improve the care of people with a learning disability and autistic people after the tragic death of their son, Oliver.
“Through their work, they have shown admirable dedication, commitment and passion – Oliver’s memory and legacy lives through them.
“This government recognises the appalling health inequalities faced by people with a learning disability and autistic people.
“Everyone deserves to receive high-quality, empathetic and dignified care but this cannot be achieved if staff do not have the right training. The Oliver McGowan Code of Practice published today will be a boost for anyone with a learning disability or autistic people, their families and loved ones.”
Paul and Tom McGowan said:
“The publication of the Code of Practice marks a deeply emotional and significant milestone for us and will ensure Oliver’s legacy will continue to make a difference by safeguarding people with a learning disability and autistic individuals from the same preventable failings that he tragically endured.
“The Code establishes a comprehensive legal framework for the delivery of the training, promoting consistency and a deeper understanding across health and social care services.
“We are profoundly grateful to cross party politicians for their unwavering support and especially to Baroness Sheila Hollins, whose leadership has been pivotal in advancing this important work.
“Our heartfelt thanks extend to everyone within the NHS and social care sectors, to our expert trainers, and to individuals with a learning disability and or autism, along with their families and carers. This is a true example of what meaningful change looks like, giving a voice to those who are not always seen or heard, creating a lasting impact that will continue to transform lives for the better.”
Tom Cahill CBE, National Director, Learning Disability and Autism, NHS England said:
“We know that often the quality of care and support for people with a learning disability and autistic people has not been good enough and we are determined to make this better.
“This code of practice – a result of Paula and Tom McGowan’s tireless dedication – will mean all NHS staff have the training and support they need to reduce inequalities and give people with a learning disability or autistic people the care they deserve.”
Rebecca Bushell-Bauers, Care Quality Commission Director for people with a learning disability and autistic people said:
“Today highlights Paula and Tom McGowan’s tireless campaigning in their son’s name for better care for autistic people and people with a learning disability.
“We are dedicated to advocating for and improving the health and care outcomes for people with learning disabilities and autistic people. The code of practice will further support us in assessing and inspecting whether health and social care providers are training their carers and staff to support autistic people and people with a learning disability appropriately and hold them to account to ensure they are delivering good, informed and safe care.”
Baroness Hollins said:
“I am delighted that, following my amendment to the 2022 Health and Care Act, the Oliver McGowan Code of Practice has now been laid before Parliament. This milestone supports the requirement that health and care staff complete training that equips them to better care for people with a learning disability and autistic people.
“I pay special tribute to Paula and Tom McGowan, whose tireless advocacy in memory of their son, Oliver, has led to lasting change including through the Code and training in his name. This is a vital step towards tackling health inequalities and improving care across health and social care services.”
The training will be backed by funding as part of the Learning and Development Support Scheme for adult social care in Autumn 2025.
Any adult social care providers who arrange for training for their staff between April 2025 and March 2026 will be reimbursed for the costs.
The Health and Care Act 2022 set out a legal requirement for CQC health and care providers to ensure staff receive appropriate training in caring for those with a learning disability or autistic people.
Oliver McGowan was repeatedly prescribed antipsychotic medications despite medical notes highlighting his severe adverse reactions to these drugs and against his and his family’s wishes.
Healthcare staff consistently failed to understand how autism presented alongside epilepsy and did not make the adjustments needed to accommodate for his needs.
Oliver died after developing a severe side effect to the medication which caused brain damage, and after life support was withdrawn by his parents, he died on 11 November 2016.
Oliver’s parents, Paula and Tom McGowan, have campaigned for better training for health and care staff to improve understanding of the needs of people with a learning disability or autistic people.
