Mandatory autism training for social care staff

David Crisp, a National Autistic Society-trained independent international autism speaker from Wired4autism, discusses the Oliver McGowan Mandatory Training Trial.

The National Autistic Society, in conjunction with Health Education England (HEE) and Skills for Care, has commenced delivery of the Oliver McGowan Mandatory Training (Trial) in Autism and Learning Disabilities.

I am proud to have been selected as one of the external autistic contractors to co-deliver this training trial with the National Autistic Society, which is now live and being presented to staff in the NHS and social care. 

I have personal and professional experiences of how autistic individuals are often not fully understood by health and social care staff, however well-intentioned they may be.

This training is named after Oliver McGowan, whose death shone a light on the need for health and social care staff to have mandatory autism training.

In 2016, Oliver, who had mild autism, cerebral palsy and focal epilepsy, was admitted to hospital because of seizure activity. Although not diagnosed with any mental illness, he was prescribed anti-psychotic medication to control his agitation while in hospital.

This was despite being informed by Oliver and his parents that certain antipsychotics caused him severe side effects, including increased agitation and seizures.

Oliver’s condition deteriorated and he died a few weeks later from neuroleptic malignant syndrome, a rare but serious side effect of antipsychotic medication.

Unfortunately, Oliver’s experience has not been unique. There have been some alarming cases in recent years in the UK where staff in general hospital settings have failed to acknowledge the sensory and social-communicative problems associated with being in a hospital environment. Leading to behavioural problems in autistic individuals being misinterpreted as psychiatric problems and subsequently leading to detention in a mental health unit, or misdiagnosis and poor treatment within general medical care provision.

Consequently, the incidents of challenging behaviours often increase dramatically, leading to misdiagnosis or a longer period in hospital than would have been necessary if the needs of an autistic individual had been more fully understood.

There is currently no medication that is universally effective in autism. Yet medications are often prescribed inappropriately for both control of maladaptive behaviours and the treatment of other conditions such as seizures.

All too often, however, autistic children and adults are over-medicated in an effort to ‘control’ rather than manage behaviours.

What is the Oliver McGowan Training ?

As a consequence of Oliver’s death, his mother, Paula, launched Oliver’s Campaign to ensure that mandatory training in autism and learning disabilities will be provided to all health and social care professionals in the public and private sector.

This training, funded by Health Education England, will ensure that all staff working in health and social care will have a better understanding of people’s needs, resulting in better services and improved health and wellbeing outcomes.

It has been developed and is being delivered by individuals who are actually autistic, sharing their own unique experiences with health and social care, within a structured training programme.

Health and social care professionals have nothing to fear from this training. The ethos is not to condemn professionals for past failings, but to promote positive change through understanding and acceptance of autism and learning disabilities, and improving the outcome of all who come into contact with health and social care services.    

Where did it come from?

In November 2019, the Government published ‘Right to be heard’, 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. The training will draw on existing best practice, the expertise of people with autistic people, people with a learning disability and family carers as well as subject matter experts.

HEE and Skills for Care have coordinated the development of this training, which has been co-produced by autistic people, people with a learning disability and family carers.

Once the trial has been completed, it will be evaluated and offered to all health and social care providers in England, and become mandatory for all staff working in these professions.

What happened to Oliver would have been avoided if NHS staff had better training in autism awareness and acceptance of neurodiversity. His lasting legacy is to ensure a better outcome for autistic and learning disabled individuals. This trial is the beginning of that journey and should be welcomed by all staff working in health and social care.

Find out more about Oliver’s story and Oliver’s Campaign here.

Photo Credit – Oliver’s Campaign