The Oliver McGowan Mandatory Training in Learning Disability and Autism

We are delighted to help support the Oliver McGowan Mandatory Training in Learning Disability and Autism, alongside autistic people, people with a learning disability and families and partner organisations. 

I am so proud to know this wonderful Mum. Usually, awards from royalty go to the wrong people but here is one occasion where they absolutely got it right. Her story is heartbreaking after the loss of her wonderful son Oliver. But rather than fall into a depression she used that pain and turned it around to help empower other parents. The Oliver McGowan mandatory training has been given royal assent and must be done by every professional working with children and young adults with a learning disability and autism. It has been a much needed and necessary step in improving the way our children are treated by professionals.

Why is it called The Oliver McGowan Mandatory Training?

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

You can see more about Oliver’s Campaign here 

and take a look at the video of Oliver and Paulas story below.



This training is for health and care staff in England. It will make a huge difference to autistic people and people with learning disabilities, by improving understanding of their diagnosis and how to adapt their care and support for them.  It is the result of tireless campaigning, from Paula McGowan who has been awarded an OBE for her work. Paula has been at the forefront of calls for better understanding and training for health and care professionals since the tragic death of her son, Oliver, in 2016. The training is named after Oliver. You can find out more about his story on Oliver’s Campaign website and on  Youtube.

Health Education England (HEE) and Skills for Care are coordinating the development of the training. There are four separate trials, each being delivered by a different partner organisation and co-produced and co-delivered by autistic people, people with a learning disability and family carers..

Why this training is important

Thousands of autistic people and their families, as well as our charity, backed Paula’s petition and made the Government act to make sure autism was included in health and care staff training. In 2018, the Government committed to making this happen, and then in 2019 the Government promised to start rolling it out, finally living up to its duties in the Autism Act.

Our own research suggests that professional understanding of autism is worryingly low. Only 11% of autistic adults think hospital doctors understand autism, while 10% believe this for social workers. That’s why we really wanted to work with autistic people, people with a learning disability and their families, to develop what this training looks like and to deliver it. 

Partners

The Government launched an open application process at the end of 2019 for autistic people and people with a learning disability, and charities, to propose how they would develop and trial this training. After reviewing all the applications, on the 16th July 2020, Health Education England announced who will be working together to do this.

How the programme is run

Services are working together to deliver a high-quality trial for the training. All the consortiums that have been selected by Health Education England and Skills for Care are working slightly differently. Autistic people are of course at the heart of developing and delivering the training, along with staff from within our charity, our partners and their staff. 

Consortium partners set up steering groups that meet monthly. It includes a majority of and is co-chaired by people with lived experience, including people who are either autistic or have a learning disability or their families. 

People with lived experience are part of every workstream and are an integral part of the design, production and delivery of the training, and also provide oversight. The training will be delivered by autistic people and people with a learning disability and will feature films scripted and acted by people with a learning disability (Access all Areas).




Oliver McGowan The brave young man whose death and is mothers brave campaigning has lead to a change in the way that people with learning disability and autism are treated by medical and social services.

The National Development Team for inclusion, in partnership with My Life My Choice and Bemix have been chosen by Health Education England, Skills for Care and the Department of Health and Social care to be the evaluation partner for the Oliver McGowan Mandatory Learning Disability and Autism Training trial.

The training is named after Oliver McGowan, a young autistic man who died after being given anti-psychotic medication in hospital against his and his families wishes. Following Oliver’s death, his mother Paula McGowan led a campaign for more training for health and social care staff to provide them with the confidence and skills to understand the needs of people with learning disabilities and/or autism in their care. We believe that for the training to be effective it must lead to better care, support, and ultimately outcomes, for people with learning disabilities and/or autism.

In 2019, the government set out their commitment to mandatory training in their consultation response in 'Right to be heard’. In this, they announced funding to develop and test a learning disability and autism training package which can be rolled out widely.

Four different groups are developing a range of approaches to delivering the training trials, led by:

- British Institute of Learning Disabilities (BILD)

- Gloucestershire Health and Care NHS Foundation Trust

- Pathways Associates CIC

- Royal Mencap Society/National Autistic Society

NDTi are working with My Life My Choice and bemix to undertake the evaluation of these training trials. Our evaluation team and advisory group involve a number of people with lived experience (both self-advocates and family carers) to ensure help make sure that this focus is central in our evaluation approach.

When will the trials start?

The timescales for the project have been affected by coronavirus but we are pleased to have started delivering the training in July for health and social care organisations around the country.

After the conclusion of the trial, which we expect to be before the end of 2021, an independent evaluation will be co-produced. This will report on the impact of the trial training, and will identify the most appropriate content, material and delivery methods for the wider rollout. 

Find out more about the training and how it’s being developed, trialled and evaluated on the Health Education England website. 

Caroline Stevens, Chief Executive of the National Autistic Society, said: “We are delighted to contribute to this vital training, alongside the other partners. Autistic people and their families will rightly be at the centre of the programme and involved in every stage, from the design right through to the delivery and evaluation. 

“The training will make a huge difference to hundreds of thousands of autistic people once it’s rolled out. It is only happening thanks to tireless campaigning, especially by Paula McGowan who has been fighting for this ever since the tragic death of her son Oliver in 2016.

"The truth is too many healthcare staff still don’t understand autism or how to support autistic people. An inquiry by MPs and peers found that just 11% of autistic adults think hospital doctors have a good understanding of autism, while only 10% said this for social workers.

“Simple things, like giving someone more time to understand and answer questions in a consultation can make all the difference. Failing to make reasonable adjustments could put someone's health at risk.

“This training is a big step forward but it’s not enough on its own. Autistic people will continue to face huge health inequalities until the Government properly invests in social care and community mental health services. The system has been in crisis for years and this has been laid bare for all to see by coronavirus."

Further information

Learning disability

  1. The Oliver McGowan Mandatory Training in Learning Disability and Autism.

 

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 developing a standardised training package. The training will draw on existing best practices, 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 are coordinating the development of 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. If you want to find out more, please email information.team@skillsforcare.org.uk

 

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

You can see more about Oliver’s Campaign here and take a look at the video of Oliver's story here.

 

You can watch our four partner presentations from our February 2021 stakeholder event and two videos shown by trial partners Mencap and NAS below. The two films reflect autistic peoples experiences when making an appointment with a GP. Also listed below is the full recording of our 6 July stakeholder event and an opening video from Dr Amir Khan. 

Following our latest stakeholder event in July 2021 and your feedback we have now updated our Frequently Asked Questions. 

 

The Interim Report for the Oliver McGowan Mandatory Training in Learning Disability and Autism Trial

Independent Evaluator NDTi has published its interim report of the progress of The Oliver McGowan Mandatory Training in Learning Disability and Autism Trial (November 2021). The report describes the progress so far and shares some of the early insights at this early stage of the trial.

You can read the report here and there is also an Easy Read version here.

 The full story of how Bristol boy Oliver McGowan died in Southmead Hospital

His life-support machine was switched off in 2018

Thomas Oliver McGowan after medication

Thomas Oliver McGowan seizures

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IN MEMORY OF OLIVER

A five-day inquest into the death of Bristol boy Thomas Oliver McGowan, who was only 18 years old when he died, took place in 2018.

Known as Oliver to his family and friends, the young man from Emersons Green was taken to Southmead Hospital after he suffered simple partial seizures on October 22, 2016.

Sadly, complications in his care at the hospital meant Oliver never left, and his condition deteriorated.

Oliver McGowan's mum shares powerful new video that could save lives

His life-support machine was switched off on November 7 and the much-loved young man died on Armistice Day, November 11.

The inquest called witnesses to take the stand and included family and medical staff involved in Oliver’s care.

It looked at what happened to Oliver when he was taken to the hospital by ambulance and his treatment in the Intensive Care Unit (ICU).

Oliver had mild autism, epilepsy and learning difficulties after getting meningitis at three weeks old.

Among the key points to be explored at the inquest were why Oliver was given anti-psychotic medication Olanzapine, despite protests from his parents and himself.

There were also questions about restraint, and any alternative methods to manage Oliver’s behaviour.

Bristol Live covered the inquest day-by-day in 2018, with reporter Michael Yong updating readers on each day of the case.

Day zero

Day zero (Image: Family)

Oliver’s family told us ahead of the inquest how Oliver had always been a boy to fight against the odds.

When doctors told his parents as a baby he would not survive, he did. When he suffered two episodes of meningitis, he fought through.

And even if it left him with cerebral palsy, epilepsy and mild autism, he did not let his disabilities hold him back.

He went to Culverhill School in Yate and was hugely popular with his peers. A talented sportsman, he always had a ball (and the world) at his feet.

Here is the full tribute

Day one, Monday

Day one (Image: Family)

After hearing short statements of ID and from Oliver’s GP, Thomas McGowan – Oliver’s dad – took the stand.

He gave a heartbreaking account of how doctors “arrogance” had led to his son’s death. The court is also told about Oliver and his parents’ protests against anti-psychotic medication.

But unknown to his parents, it had already been prescribed to Oliver. The parents only found out after speaking to a nurse.

Full story here

We also heard that Oliver was “very scared and agitated” when he came to Southmead because of the police officers, security guards, nurses and doctors all asking him questions at the same time.

The young man had to be restrained by police officers, and the court was told Oliver might have been thrown onto a hospital bed. Doctors and family raised concerns about the treatment.

Read how police restrained Oliver

Day two, Tuesday

Day two (Image: Family)

We hear from Dr Howard Faulkner, the consultant neurologist, and Dr David Campbell, a consultant in Intensive Care Medicine.

The court hears how Oliver developed Neuroleptic Malignant Syndrome (NMS) which was caused by the anti-psychotic drug Olanzapine. His temperature spiked and his brain swelled until it was coming out of the base of his skull.

There was no chance of a “meaningful recovery”, doctors said.

The court was also shown a still from a video which showed how Oliver had reacted previously when he was given an anti-psychotic.

The full story, video and still are here

Day three, Wednesday

Day three (Image: Family)

The doctor who prescribed Olanzapine, Dr Monica Mohan, takes the stand. The neuropsychiatrist explained she had done so because she believed it was in Oliver’s “best interests”.

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But when she found out it had led to NMS and his brain injury she said she was “sorry” to Oliver’s mum.

When questioned at the inquest if she would do it again, she said she would because she believed it was the right thing to do.

Here is her account of what happened , and why the family disagreed.

Day four, Thursday

Thomas Oliver McGowan (Image: Family)

Two independent experts took to the stand on Thursday. Dr Nigel Langford, a consultant in clinical pharmacology, told the court it was "possible" Oliver was still here if Olanzapine had not been prescribed.

The pathologist, Dr Russell Delaney, said Olanzapine caused NMS which was a "significant contributory factor" in Oliver's death.

The family shared a heartbreaking video of Oliver suffering from seizures while intubated in his hospital bed.

Here is the full story.

Day five, Friday

oliver was 18 at the time (Image: Family)

In his conclusion, assistant coroner Dr Peter Harrowing said doctors did the right thing in prescribing the medication which eventually led to Oliver's death.

Olanzapine caused NMS, which eventually caused the brain injury which killed Oliver. The coroner also said pneumonia played a part in Oliver's death.

You can read his conclusion here.

After the inquest, Oliver's family said they felt the coroner was "ferociously protective" of the doctors and that they were "extremely disappointed" with his conclusion.

They said they had wished the doctors would learn from their mistakes, but they were "arrogant and dismissive" of Oliver's needs.

You can see what they said here.

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Updates

What will the training look like?

What and who is involved?

How did we find our partners?

What will happen next?

Key meetings

Related Documents

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