Autism and Learning Disability Training: Healthcare Professionals

Lyn Brown Excerpts

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.

--- Later in debate ---

[Chris Skidmore (Kingswood) (Con)]

Thank you for calling me to speak, Dame Cheryl. I recognise your expertise and knowledge in this area. As one of the leading Members of the House, you have worked tirelessly to represent the rights of those with autism, and you took the Autism Act through Parliament. My comments will pale in comparison. Your position today prevents you from speaking, but I want those watching the debate to know how indebted Members on both sides of the House are to you for your efforts.

I speak in my capacity as the Member of Parliament for Kingswood, near Bristol. My constituent, Paula McGowan, has worked tirelessly and courageously to highlight the tragic death of her son, Oliver McGowan, on 11 November 2016. Paula’s work to establish Oliver’s campaign and call for mandatory autism and learning disability training for NHS professionals led to the creation of a petition, which had been signed by 51,310 people as of around 3 pm. I am extremely grateful to the Petitions Committee for scheduling this debate on that petition.

I speak as Paula’s local representative, but what she has achieved in the face of such extreme grief and anguish is so remarkable that, in all honesty, she should be telling Oliver’s story in this debate. That story is awful and harrowing, but it needs to be told. I am grateful to the hon. Member for Cambridge (Daniel Zeichner) for putting Paula’s testimony on the record. She sent me some additional personal words. It is important that I place those words on the record, too, not only for the benefit of Members present but so that they stand as a testament to Oliver and so that his death is remembered eternally in the House’s official record, Hansard.

Paula states:

“From the moment Oliver was born, we knew that he was special and our love for him was overwhelming. Oliver was born premature and developed meningitis at three weeks of age. He was very ill and we were told they did not expect him to survive. However, Oliver began to recover. Everybody who came into contact with Oliver warmed to him and could not resist spending time with this baby.

Sadly, Oliver developed a second episode of meningitis and was incredibly ill. Amazingly, against all odds and many months of hospital treatment, Oliver’s strength and determination shone through and he survived once again, and as always with that beautiful heart warming smile that everybody was drawn to. Oliver—as a result of an infarction caused by the meningitis—was left with mild cerebral palsy, focal epilepsy and later on a diagnosis of high functioning autism.

Oliver’s disabilities did not hold him back. He had a can do attitude and amazed everybody with his achievements. He played for the South and North West Centres of Excellence England development football squads. He was a registered athlete with the Power of 10 and was ranked 3rd best in the country for athletics. Oliver was a member of Team Bath and was being trained to become a Paralympian.

Oliver was a natural leader and became a prefect and chair of the school council, later college. He attained several GCSE and BTEC examinations. He went on to attend National Star College in Cheltenham. Their opinions of Oliver were very complimentary, writing how he was often mistaken to be a member of staff; how friendly and kind he was, supporting students who were less able than himself; his wicked sense of humour; and the aspirations they had for him to start a sports course at a local ski centre.

Oliver brought so much happiness and fun to our lives; he always saw the best in everything and taught all of us how to look at things differently. Oliver never failed to light up a room with the sound of his laughter. He wanted to make everybody happy and did his best to achieve that. Despite his limitations, he never complained or asked, ‘Why me?’ He accepted everything and always with a smile. His courage and enthusiasm was inspirational. We were told by his neurologist that Oliver had a full life expectancy and it was expected he would live an independent life with a little support.

On 15 October 2015, Oliver was admitted to a children’s hospital, having what we—his parents—and college staff recognised to be simple partial seizures. These caused Oliver to be anxious, agitated and confused. After several weeks of tests Oliver was discharged home and given sertraline—an antidepressant medication—to treat his anxiety. We were surprised as Oliver was not depressed. Once this medication was increased, it caused a change to Oliver’s mood and increased his seizures greatly.

He was admitted back to the same hospital on 15 December 2015, but this time was given antipsychotic medications. The doctors were misunderstanding Oliver’s autistic behaviours to be an ictal psychosis, and his normal autistic obsessions to be delusional behaviours. The effect on Oliver was catastrophic. Oliver’s seizures threshold and anxiety deteriorated and he was eventually held against his will under the Mental Health Act, section 2. We challenged this on numerous occasions, stating we felt it was the drugs that were causing the changes to Oliver’s mood and seizures.

A psychiatric bed could not be found and doctors decided to remove the antipsychotic medications. Within days Oliver’s mood and seizure activity improved and he was discharged back home into our care. A community psychiatrist wrote Oliver was sensitive to antipsychotic and benzodiazepine medications.

On 15 April 2016, Oliver was readmitted back to the same hospital having simple partial seizures and was anxious. Sadly, Oliver was again given antipsychotic medications, one or more of which caused a serious side effect called oculogyric crisis. He was left like this for several hours as the doctor at first believed it was behavioural. After four hours he was given procyclidine medication. Again, Oliver’s mood changed significantly. He was hallucinating, having up to 30 seizures a day—something we had never seen happen—and had problems urinating, extreme high blood pressure readings and sweating, all of which were linked to medications.

We strongly believed the drugs were the cause of the decline in Oliver’s mood difficulties. It was obvious that doctors and nurses had little to no understanding of autism and how autistic behaviours could present in a person with ongoing seizures. When in seizure, Oliver was always fully conscious, and because he had no control of the seizures they caused him to be frustrated and scared.

At my request, Oliver was transferred to a specialist adult hospital, which I thought would have understood Oliver’s epilepsy better. Oliver had been provided with a letter stating his reactions to previous medications. Sadly, the use of physical restraint was increased with up to eight staff being involved. Oliver was suddenly not allowed any privacy with his personal care. He had three staff sat around his bed and he was kept in a darkened room. Oliver was very frightened and he told me just how scared the staff were making him feel.

Oliver was again given different antipsychotic medications and consequently detained against his will and transferred to a specialist mental health ward. The different approach from skilled staff allowed Oliver to improve within days. The words from staff including doctors from the unit were that Oliver was not psychotic or mentally ill, and that his placement there was a total misuse of the Mental Health Act. They reduced all antipsychotic medications and Oliver was discharged after a few days into the care of a specialist learning disability team, again with a letter saying that he was sensitive to antipsychotics and benzodiazepines.

The team was very supportive and specialised in people with autism and learning difficulties. A consultant psychiatrist in learning disability wrote that Oliver was not psychotic or mentally ill. He believed Oliver’s behaviours were a result of autism and mild learning difficulties and an environment that was not adapted to meet his needs.

Sadly, on 16 October 2016, Oliver had a cluster of seizures and was admitted to an adult general hospital. Oliver told ambulance staff and also doctors in A&E not to give him antipsychotic medications as they messed with his brain and made his eyes go up. He was reassured by doctors they had no intention of using those medications. We gave doctors a folder of supporting letters stating Oliver’s reaction to antipsychotic medications, and it was subsequently written in bold red ink on Oliver’s medical care sheets he was intolerant to all antipsychotics.

Oliver was intubated. The safeguarding officer was consulted on how to manage Oliver’s anxiety when sedation was reduced. His advice to the doctors was a non-pharmaceutical approach and to use soft handcuffs. We were told we should be present as we would be able to reassure and comfort him. We were told that most people would become highly anxious when woken from being sedated. This advice was not listened to and sedation was reduced without our presence. According to staff, Oliver became anxious. He would have felt scared waking to find tubes in his throat and in unfamiliar surroundings without familiar faces. Full sedation was increased.

We were consulted by a neuropsychiatrist who had met Oliver for two 10 minute appointments in the community. She asked us about giving Oliver an antipsychotic. We made it very clear about Oliver’s previous reactions to this type of medication and that she did NOT have Oliver’s or our permission to administer any antipsychotic medications. Despite this, Oliver was given the antipsychotic medication olanzapine at a low dose that evening without our knowledge. The next day, we again made it clear to all doctors and nurses that they did not have Oliver’s permission to administer this.

Oliver, over the next few days, developed a temperature of 42^°. Because doctors said his liver function was elevated he was not given any medication to control the temperature other than a light blow up mattress filled with cold air. This was not effective. Doctors could not understand the decline in Oliver’s condition and they sent him for a scan of his liver and lungs. Unfortunately, it was several more days before they scanned his brain. It was so badly swollen it was bulging out the base of his skull. We were told Oliver had neuroleptic malignant syndrome, a rare but serious side effect of antipsychotic medications.

A week later, the decision was made to turn Oliver’s life support machines off. Oliver passed away several days later on 11 November 2016: Armistice Day—poignant given we are a military family.”

Paula continues:

“Oliver’s was a life wasted due to doctors not communicating effectively with family and practitioners who knew him well and who were in daily contact with the hospital. We believe the doctors were arrogant and ignorant and believed they knew Oliver better than his parents. They did not consult wider, when there was ample opportunity to do so.

We have since been told by the doctor who administered the antipsychotic drug that she would have given it regardless of our wishes, as she believed it was in Oliver’s best interests, and she would do the same thing again given the same situation knowing that Oliver has lost his life. We understand that many people receive the medications that Oliver was given, often for managing a mental health condition, and do so without suffering the effects that Oliver had. In Oliver’s case, we had clear understanding that he was sensitive to these medications and we believe they should not have been prescribed.

We believe that Oliver’s death was very preventable. We believe that Oliver was given excessive drugs due to medical staff not understanding autism impacted by seizure activity. They did not ever try to adapt the environment to meet his needs, but used excessive restraint methods. They failed to make any communication with community-based professionals who were working with Oliver on a daily basis and knew him well.”

A later inquest into Oliver’s death concluded that the care Oliver received in the lead-up to his death was “appropriate”. It stated that despite warnings from Oliver and his parents, the development of complications from medication could not have been predicted. As a local Member of Parliament, I was in contact with Paula after Oliver passed away to support her when she approached the local police and coroner’s office to ask for an investigation into the death of her son. I will continue to offer all the support that I can.

In spite of that inquest’s conclusions, the Government’s learning disabilities mortality review programme, which investigated Oliver’s case, highlighted the challenges that vulnerable people such as Oliver still face in gaining access to appropriate care. There remain serious disparities in the quality of health support and care received by people with autism and learning disabilities. The evidence shows, as has already been mentioned, that people with learning disabilities die at a far greater rate than others. Often, that can be prevented with the right care and support and better awareness and training.

Recent reports from Mencap, which has been recognised for its ongoing efforts and campaigns, found that one in four doctors and nurses has never had any type of training on learning disability. Clearly, that is unacceptable. Every person should receive the same high quality of care, whether or not they have a learning disability. Although we have made progress in our collective understanding of autism and learning disabilities, much more needs to be done to ensure that vulnerable people receive the right support from our healthcare system when they need it most. I am encouraged that the Government have accepted all the recommendations from the learning disabilities mortality review, including recommendation 6, which proposes the introduction of mandatory training for all health and care staff. I am also pleased that they have committed to delivering that training in partnership with people with experience, including families and parents like Paula.

I welcome the Government’s proposals for a consultation on options for delivering that essential training to staff, which is due to be completed by the end of March 2019. With that in mind, I would welcome it being arranged for Paula to meet the Minister to discuss Oliver’s campaign and its consequences, and for this work to continue. I would also welcome the Minister and the Department continuing their close working with Mencap, the National Autistic Society, other charities and relevant organisations, and indeed Members of Parliament such as the Solicitor General, my hon. and learned Friend the Member for South Swindon (Robert Buckland)—he is in his place but his ministerial role affords that he cannot speak in the debate—who have personal experience of autism. It is right to draw on that.

[Lyn Brown]

I have listened to the hon. Gentleman and have been really affected by his speech; I am sure he has been affected as the local MP. I pay tribute to him for how he is putting his case, but does he not agree that the review is unnecessary and that what we actually need is some action now?

[Chris Skidmore]

I agree that we need clarity, not only extra guidance. The review is one step in a journey that has yet to be completed. I own up to this, having been a Minister previously: there is a commitment to looking at guidance and training, but I am concerned with the implementation. Going forward, we could produce all the training, guidance and material we want, but how will we monitor the outcomes? What are we seeking to achieve?

A couple of months into my job as a Minister in the Cabinet Office, having previously been secretary of the all-party parliamentary group for disability as a Back Bencher, I wanted to look at how we could increase and encourage electoral registration among those with learning disabilities. The answer I got was, “Well, there is guidance out there already, Minister. The Electoral Commission has produced documentation.” However, it was patently clear to me that it was not being implemented in polling stations across the country. I would like to see a commitment from the Minister not just for consultation and guidance to be produced but to ensure that we have accountability. The Care Quality Commission must be involved, and people must be judged on the standards introduced; this must be followed through.

In conclusion—this may chime with what the hon. Member for West Ham (Lyn Brown) said—I return to the words of Paula McGowan:

“If the guidelines and principles from NHS England’s STOMP—stopping the over-medication of people who have learning disabilities—project had been followed with healthcare professionals being able to listen to family and specialist colleagues, then we firmly believe that Oliver would still be here today. We believe that Oliver’s premature death should be in the public’s interest, and I challenge the Government to: ask people with a learning disability, autism or both, their families and carers for their opinion and concerns about treatment; listen to all involved and show respect to those opinions and concerns; and do something about it and work in partnership with us. Specifically, NHS professionals who provide specialist care in learning disability and autism should: put people at the heart of all decision making; respect our point of view; not make decisions without us; and enable us to understand complex decisions in a way that is relevant to all and provide information and explanation.

In particular, check if your patient has a hospital passport. Respect your patient by getting down to the same level as them—don’t stand if your patient is sitting. Give them personal space. Modify your language so that it is clear and precise, and don’t use medical jargon. Check your patient has understood what you are saying. Effectively listen to your patient. Give your patient time. Make them feel valued and included in their treatment plan. Mostly”—

above all—

“offer reassurance. In addition, liaise with healthcare colleagues in general hospitals to raise awareness and understanding of learning disability, autism and the principles of STOMP. And, above all, do everything in your power to prevent a story like Oliver’s from having to be told again.”

From my own point of view, I hope that we can all work together to ensure that we do not have to stand here again, making the case for change. Let us support Oliver’s campaign and ensure that his death marks a watershed moment and a turning point in how we treat those with autism and learning disabilities in the NHS.