New training code published for nurses on learning disability and autism

The government has published a new code of practice to ensure consistency of training for health and social care providers looking after people with a learning disability or autism.

It sets out the standards that any CQC-registered provider, including GP practices, will have to meet to be compliant with the law.

The new code also recommends that organisations use The Oliver McGowan Mandatory Training on Learning Disability and Autism for staff in their team.

Named after a young autistic teenager with a mild learning disability, who sadly died in 2016 after having a severe reaction to medication which he and his family had asked for him not to receive, the training has been trialled with over 8,000 participants.

Oliver who also had epilepsy, was repeatedly prescribed antipsychotic medications despite medical notes highlighting his severe adverse reactions to the drugs. His parents have been campaigning for better training for healthcare staff ever since.

It is hoped the new standards will tackle health inequalities faced by people with a learning disability and autistic people, who face poorer health outcomes than general population, the government said.

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Figures show that, on average, males with a learning disability die 19 years younger, and females 23 years younger than the general population.

In 2022, 42% of deaths of people with a learning disability were rated as avoidable in comparison to 22% for the general population, the standards set out.

The standards describe the level of training that is needed dependant on an individual’s role with a minimum curriculum for everyone. Staff are also expected to explore how they will put training into practice.

Training should also involve live and interactive sessions co-delivered by people with a learning disability and autistic people.

And training that is offered should be evidence-based and quality assured, the standards state.

As well as ensuring all staff receive training appropriate to their role, the chosen training package must meet the standards set out in the code, which CQC will take into account, it said.

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.

‘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.’

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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.’

Tom Cahill, national director, learning disability and autism at 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.’

The Royal College of Nursing (RCN) professional lead for learning disability nursing, Jonathan Beebee, said: ‘Improved training for all health and care staff is critical to reducing the health inequalities faced by autistic people and people with learning disabilities.

‘It remains a vital principle that wherever patients come into contact with the NHS and other care services they receive the same high quality of care.’ 

He described how the number of learning disability nurses had collapsed in recent years and warned that training will not replace the need for specialist nurses in this area. 

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‘This should be the start, not the end, of the journey to improve care for those with learning disabilities and autistic people. 

‘We now need new and sustained investment to stabilise and turn around learning disability nursing, with the specialism put at the heart of the government’s upcoming 10-year plan,’ he added.

A version of this article was first published by our sister title, Pulse.