Autism and Learning Disability Training: Healthcare Professionals

Debate between Lyn Brown and Daniel Zeichner

Monday 22nd October 2018 Westminster Hall

[Daniel Zeichner (Cambridge) (Lab)]

I beg to move,

That this House has considered e-petition 221033 relating to autism and learning disability training for healthcare professionals.

It is a pleasure to serve under your chairmanship, Dame Cheryl. You are an expert in this issue and have campaigned on it for many years. I am sure you wish you could be contributing to the debate.

The petition text is particularly important, so I shall start by reading it to inform hon. Members fully and to put it on the record. Paula McGowan, the petitioner, wrote:

“My son Oliver was only 18 when he died in hospital on 11 November 2016. I believe his death could have been prevented if his doctors and nurses had received mandatory training. He had autism and a mild learning disability, and they weren’t trained to understand how to make reasonable adjustments for him. One in four healthcare professionals has never had training on learning disability or autism. This is unacceptable. Two thirds want more training, and one in three think a lack of Government leadership is contributing to the problem of avoidable deaths. The Government must ensure all healthcare professionals get mandatory training to address the huge health inequalities facing people with autism and a learning disability.”

That is the wording of the petition which I speak to, and I open the debate on behalf of the Petitions Committee. I point out to the many people watching or following the debate that in the main Chamber, the Prime Minister will shortly make a statement on last week’s EU summit and that many hon. Members who would have liked to contribute to this important debate have faced a difficult choice, which is perhaps why we are relatively few.

I will start with some background. In 2016, Oliver McGowan died in hospital. He was autistic and had a mild learning disability, mild cerebral palsy, and partial seizures. I will read his mother’s account of what happened. She is waging a powerful and brave campaign. As she told me, mothing can bring Oliver back, but she wants to ensure that lessons are learned properly, so that in future, others will be safer. She would very much have liked to deliver the account herself, but under Parliament’s current rules, it is not possible for her to speak in the debate. Her account is lengthy, but it is important that it is heard in full. This is Oliver’s story, in his mother’s words:

“Oliver enjoyed college, playing football and was an amazing athlete, in training to become a Paralympian. Oliver loved life and being with his family. He was bright, achieving GCSE and BTEC qualifications, was a member of the school council and head prefect. He was a fit and active teenage boy and yet on the 11 November 2016, aged 18, he died in Southmead hospital, Bristol, in circumstances that his family believe were entirely avoidable. When we brought him to A&E with absence type seizures, we thought he would be in hospital for a couple of days at the most, and he would go to college the following week as planned.

Oliver had mild hemiplegia, absence type partial seizures and a very mild learning disability as a result of having meningitis as a baby. He also had high functioning autism. His additional needs were not obvious to most people, but anxiety was a challenge for him.

When Oliver turned 17, his absence type seizures increased and on several occasions he had to spend time in hospital for investigations. His seizures caused him to become anxious, scared and agitated and due to this, his high functioning autism became more obvious.

In October 2016, aged 18, Oliver was admitted to an adult hospital having absence type partial seizures. Oliver explained the seizures as being like several bees buzzing down one’s ears whilst you are trying to think and go about your day; incredibly frustrating and distracting. He was conscious throughout and was very scared and anxious.

A&E staff were presented with Oliver’s hospital passport, detailing how his autism and learning disability affected him and how to make reasonable adjustments. It also detailed his allergies to antipsychotic medications. This was not read but placed in a drawer without a glance.

Several doctors were talking to Oliver at once, using complex language that was hard to understand. When Oliver wanted to walk around (a normal part of his seizure activity) he was restrained by several members of staff, which heightened his anxiety.

Oliver had said clearly to the ambulance staff, he was happy to go to hospital, but he did not want to be given antipsychotic medicine, giving sound reasoning, stating ‘they mess with my brain and make my eyes go funny’. He said this again in the hospital, as did we, providing letters from previous consultant doctors explaining Oliver’s reactions to medications and busy hospital environments.

Previously, when these exceptionally strong medications had been trialled to help Oliver’s anxiety in seizure, we had seen Oliver’s behaviour change in a way we had never seen before: hallucinating, tearing at his skin with significant increase in seizure activity. We knew that Oliver was not psychotic or mentally ill. Previous senior psychiatric consultants had said the same thing, that Oliver was not psychotic or mentally ill but a teenager who had high functioning autism and a mild learning disability impacted by partial seizures. They wrote he was sensitive to medications, especially benzodiazepines. The doctors in A&E wrote ‘antipsychotic medication’ in red in the allergies box on all of Oliver’s ICU patient 24 hour care charts. The A&E doctor also sent an email to all doctors treating Oliver that he was sensitive to all antipsychotic medications.

Oliver was sedated and placed on life support in A&E to investigate his seizures. A few days later, whilst Oliver was still on life support and against Oliver’s and our strong wishes, he was given an antipsychotic drug called Olanzapine. Doctors said it was to control his anxiety when he woke up, even though we explained to them that when any seizures had finished Oliver immediately returned to his normal mild mannered self.

Oliver never woke up; the Olanzapine caused him to develop Neuroleptic Malignant Syndrome, or NMS. His brain swelled so badly it was bulging out of the base of his skull causing irreversible brain damage. We were told that Oliver would be blind, deaf, no memory, no speech and would be reliant on breathing machines including tube fed.

Oliver died on Armistice Day, a fitting day given Oliver’s father is a serving senior officer in the Air Force and Oliver had lived his whole life as a military child. We can all agree that Oliver was certainly a very brave young man.”

Paula goes on to say:

“If the doctors and nurses had been trained to understand how to make reasonable adjustments for him (someone with autism and a mild learning disability), they would have known how to adapt the environment to meet his needs. There would have been no need to use a ‘chemical restraint’ and he would not have had the NMS reaction to this type of medication.

If doctors and nurses had had the training to support Oliver’s medical, social and emotional needs effectively, they would have known how to adapt their communication, using humour to settle his anxiety in a crisis, and de-escalate the situation further. They made a decision about how to manage potentially challenging behaviour as Oliver came out of sedation. They did not properly explore alternatives to using antipsychotic medication. A senior safeguarding nurse had advised a non-pharmaceutical approach. There was time to do this and consult with other professionals who knew Oliver best and were treating him in the community, as he was sedated and stable in intensive care. This did not happen although there was time.

I believe that ignorance of learning disability and autism cost Oliver his life, and we must never allow this to happen again. I believe that if Oliver hadn’t had a diagnosis of autism and a learning disability, and presented in hospital with the same symptoms, he would not have been prescribed an antipsychotic. Oliver’s death is not an isolated case, with evidence in relation to learning disability showing 1,200 avoidable deaths every year, and women with a learning disability dying nearly 30 years earlier than the general population.”

[Lyn Brown (West Ham) (Lab)]

I can see that my hon. Friend is coming to the end of his peroration, so I thought I would intervene briefly. I understand that the Government have announced a review, but does he not agree that something a little more urgent is needed?

[Daniel Zeichner]

I am not coming quite to the end, but I have almost reached the close of Paula’s statement. I think my hon. Friend will understand from the suggestions later in my speech that I absolutely agree with her conclusion.