Autism and Learning Disability Training: Healthcare Professionals

Daniel Zeichner 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.

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

Does the hon. Gentleman not find it shocking and surprising that younger people with autism or learning difficulties have a higher incidence of dying in hospital than older people living with those conditions? It is hard to know exactly why that is, but he is discussing the case of a very young man that resulted in a completely unnecessary death.

[Daniel Zeichner]

The hon. Lady is very expert on such issues. I, too, am struck by that statistic. I do not know the answer, but it is the kind of thing we need to find out about.

To conclude Paula’s statement:

“Mencap’s Death by Indifference report, published ten years ago, set out many areas of concern behind avoidable deaths, and these findings have been built on by the detailed information now coming out of the national mortality review (LeDeR) process. Mencap’s Treat me well campaign report states that 1 in 4 doctors and nurses has never had any training on learning disability. This was our experience and is unacceptable, that’s why I launched this Government petition for all doctors and nurses to receive appropriate higher level mandatory training which could have saved Oliver’s life.

There needs to be a culture change in the way people with autism and a learning disability are treated by NHS doctors and nurses. This needs to be led from the top down by doctors and the GMC. It is not acceptable that people who have autism and learning disabilities die for no other reason than health professionals have not been properly trained on how to support them and work outside the limits of the medical model. We must do everything in our power to prevent future deaths like Oliver’s from happening again.”

That is Paula McGowan’s account. She started this petition to Parliament calling for mandatory autism and learning disability training for healthcare workers. The petition now has more than 50,000 signatures, and Paula is present in the Public Gallery to watch our proceedings.

An inquest has found that the medication was not wrongly prescribed, but Oliver’s family and Mencap were very unhappy with the inquest’s conduct and conclusions. The family firmly believe that better understanding of Oliver’s autism could have prevented his death. Paula believes passionately that Oliver’s experiences should lead to change, so that a lack of understanding does not result in future deaths.

There have been other cases such as Oliver’s, and every premature death of young person who is autistic or has a learning disability is a tragedy that we should be able to avoid. When Connor Sparrowhawk—or LB, as he is known—passed away in Slade House in Oxford, his mother called for:

“An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided rather than add on, ad hoc and (easily ignored) specialist provision.”

There are, sadly, many other cases. Only last week, for example, a high-profile case was in the media about Bethany, aged 17, who has autism and extreme anxiety. She, it seems, has been locked in a seclusion room for almost two years.

Last week, I met a local volunteer-led group, Caring for Cambridgeshire’s Homeless, who help homeless people in Cambridge. I was introduced to a 21-year-old man with autism and learning disabilities who is living on the streets. His safe place: behind a wheelie bin, at the back of a shop. His case is complex, but while volunteer interventions are a lifeline for that young man, he should be getting professional medical support from those trained to understand his needs.

[Mike Hill (Hartlepool) (Lab)]

Does my hon. Friend agree with my constituent, John Hobbs, whose grandson is autistic, about the need for a national database for autism and associated conditions designed for the purposes of splitting the autism spectrum into subsets?

[Daniel Zeichner]

I am not sure that I am sufficiently expert to answer that question straight off, because it is a complicated one, but it is certainly worth looking into further.

I shall explain some wider issues too. This weekend, I attended the excellent Volunteer for Cambridge event organised by Cambridge City Council and volunteer services, where I met Heather Lord from Cambridgeshire Healthwatch and Tara Forkin from Cambridgeshire Deaf Association. Tara told me, through the signer, about the experiences of deaf people in the health system. They, too, find that treatment is sometimes administered to them in ways they find baffling and frightening, too often with no one finding a way to listen to them. As Heather rightly asked, almost 25 years after the controversies around the Disability Discrimination Act 1995, which some of us still remember, why are people continuing to have to fight the battle? Why is it not yet won?

This subject is clearly highly sensitive. The examples I have given highlight heartbreaking incidents. Clearly, we must work harder and put measures in place to ensure that other people are kept safe after we as a society have failed Oliver, LB and 1,200 other avoidable deaths each year, according to research by Mencap. Even more remains to be done, however.

We must go back to the very beginning, as access to healthcare from the start can be extremely difficult for those with autism or learning disabilities. Seemingly simple tasks—to most of us—such as making an appointment over the phone, are a barrier to many of them. If we cannot make an appointment, or if we feel anxious about doing so, we are less likely to seek healthcare, even if we are experiencing symptoms that others would immediately refer to a doctor.

Some autistic people and people with learning disabilities find expressing themselves difficult, especially if that includes discussing intimate personal health issues, whether physical or mental. Some learning disabilities or types of autism make it harder for people to work out the sensations that their bodies are feeling, which can make it more difficult for them to realise that they are ill or need support. In terms of mental health, the group therapy sessions, for example, which work so well for some people, are often inaccessible to those with autism, who can feel very socially anxious.

Last week, the all-party parliamentary group on mental health, of which I am a vice chair, published its review, “Progress of the Five Year Forward View for Mental Health: On the road to parity”, which underlined the mental health inequalities that I have been discussing. That report recommends:

“Health Education England should improve development and training of frontline care staff with a specific focus on mental health, learning disability and autism so the existing workforce is supported and equipped to deliver direct care and support to those groups.”

The report explains:

“We heard that people with learning disability or autism (or both) routinely have their referrals to mental health services turned down because some services ‘do not accept referrals from that group’. Mental illness presents very differently in people with a learning disability or autism. As a result, symptoms of mental illness can be wrongly attributed to a person’s learning disability or autism meaning that this group does not receive the treatment they need for their mental health problems.”

Also, according to the report, the esteemed Baroness Hollins, a leading member of the APPG inquiry, emphasised throughout that

“services are legally obliged to implement reasonable adjustments so people with learning disability or autism or both can engage with mental health services. This doesn’t appear to be happening.”

Many doctors and nurses of course strive to understand autism and learning disabilities, and to adapt their practice to better cater for those needs, but with increased pressures on staffing and endless demands on the time of medical professionals, alongside increased demand, that will inevitably not be the case for every single individual in the NHS. We must better equip and empower our healthcare workers.

With the right training, doctors and nurses can help autistic people and those with learning disabilities feel more comfortable and, ultimately, receive better, more focused healthcare. Everyone working in the NHS will see autistic and learning-disabled people, even if unaware of it. Some of those workers could have an inaccurate or narrow view of what someone with a learning disability looks like, or of the traits of an autistic person, due to inaccurate stereotypes or unhelpful media representation of such conditions. All frontline staff, therefore, from GP receptionists to consultants in accident and emergency, should receive some evidence-led training about autism. The development of that training should be informed by autistic people and their families.

Paula McGowan has called for doctors and nurses to receive advanced training—tier 2—in autism and learning disability as soon as is reasonably practicable. She expressed to me that it must cover legislation such as the Equality Act 2010, the Mental Capacity Act 2005 and the Mental Health Act 1983, focusing on key areas such as reasonable adjustments to care, consent and best-interests decision making. She would like it to be

“mandatory that Oliver’s story should be used as a case study in all training”,

and for the training to be named after him: the Oliver McGowan mandatory training. As Members present will agree, Oliver’s story carries huge weight, and attaching his name will exemplify the training’s deserved importance.

We need to focus on supporting the health professionals who see autistic people and people with learning disabilities most often to understand the nuances of their health. The community is diverse, and some of the physical and mental health problems those people experience require responses different from those required by non-autistic or non-disabled people.

[Dr Whitford]

As the hon. Gentleman knows, I speak as a breast cancer surgeon of more than 30 years. The issue lies not so much with medical and nursing staff, who deal often with autistic people or people with learning disabilities, but with the people who do not deal with them often. It is those people—people in A&E and other hospital departments—who do not have the skills who really need training.

[Daniel Zeichner]

The hon. Lady makes a fair point. Training needs to be provided to all staff, but absolutely, those who are not exposed to such people are a particular issue.

My comments so far have been decidedly non-partisan, and I hope Members from across the House are able to support most of what I have suggested. However, before concluding, I must make some observations about the staffing pressures that affect our public services—particularly changes to student nursing bursaries.

We have heard in the House many times that the current financial settlement for student nurses is insufficient given the intensity of their courses. I and many others believe that nursing students need bespoke financial support if the Government are to meet their commitment to growing the nursing workforce. Those students need support for living costs to incentivise a wider range of applications. There are many ways that can be done—through universal grants for students in recognition of their placements, means-tested grants to maintain diversity or targeted support for parents and carers, as many nursing students come to university later in life.

Since the coalition Government came to power in 2010, specialist areas such as learning disability and mental health nursing have been the worst hit by the wider staffing crisis. Those specialties struggle to recruit, since mature students are particularly likely to choose them. The Royal College of Nursing reports that there are 40.5% fewer learning disability nurses—2,176 fewer full-time equivalent nurses—today than in 2010. Despite Government claims, the removal of the NHS bursary in England failed to increase the number of nursing students. Recent data shows that the number of students accepted on to nursing courses in England has fallen by a further 4% in the past year, and by 8% since student funding was removed in 2016.

Intelligence from RCN regional networks indicates that directors of nursing across England are escalating concerns about course provision. They are concerned about the stark regional variation in course provision for learning disability nursing—particularly the risk of course closures in the south of England—which may exacerbate existing regional workforce supply disparities. The huge workforce pressure risks poorer care for learning disabled people. A commitment from the Government to encourage students into learning disability nursing may improve standards of care and patient safety.

[Hannah Bardell (Livingston) (SNP)]

The hon. Gentleman is making an excellent speech. Does he agree that, while Brexit dominates much of our time in Parliament, we must we also have the opportunity to debate and get into the granular detail of important issues such as the one he highlights?

[Daniel Zeichner]

I am grateful to the hon. Lady for making that point. We could probably find favour across the House and across the country for moving on from some issues at the moment, but she is absolutely right—such issues are very pressing and probably of huge importance to most people, especially when failure to address them leads to the kind of tragedy we have heard about.

[Kerry McCarthy (Bristol East) (Lab)]

As a Bristol MP, I thought it was particularly important for me to be here. Southmead Hospital is not in my constituency, but the University of the West of England nursing course provision is. I back up entirely what my hon. Friend says about the difficulty of getting qualified nursing staff. If staff are to have all the extra responsibilities and training that have been suggested, we must ensure that the sector is properly resourced and that properly trained people come through into the profession.

[Daniel Zeichner]

My hon. Friend makes a powerful point, which I am sure we will return to. Whatever changes there are in our relationships with other countries, the shortage of qualified nurses is a huge problem—it is something like 22% in my constituency. We are unlikely to make progress on this issue unless we have the people to do it.

It is difficult to make that point at a time of such intense financial pressure on the NHS, but I remind the House that that pressure is a choice. We are a rich country, and a change in the allocation of resources could dramatically change the state of our healthcare system. However, that stress, which stems from a lack of resources, staffing, beds and specialist care, can lead to a culture in which it is difficult to provide personalised care and have the confidence to deviate from established procedure.

Let me conclude on a slightly more optimistic note. In September, in a written statement in response to the learning disability mortality review, the Minister committed to completing a public consultation on proposals for mandatory learning disability training for all health and care staff. However, that change must be quick—we cannot afford it to end up, like so many Government initiatives, in endless consultation and no action.

In England, there is a duty in the Autism Act 2009 statutory guidance for all health and care staff to have appropriate autism training, but the implementation of that duty is poor. In response to a 2016 Public Health England survey, only 17% of localities reported having training plans for all health and care staff, while 10% reported having no plan in place. The Government must commit to mandatory autism training as well as learning disability training.

The National Autistic Society remind us:

“In August, NHS England announced that autism, alongside learning disability, will be one of its four clinical priorities in the upcoming 10-year plan to improve health services. This is a great step towards making sure that autistic people are supported by the NHS just like anyone else. Alongside tackling long diagnosis waiting times and supporting good mental health, we believe that the Long Term Plan should outline a comprehensive national training programme for all health staff.”

The learning disability mortality review, which was published in May, found that men with a learning disability die on average 22.8 years earlier than the general population, while women die 29.3 years earlier. Autistica’s research shows that autistic adults without a learning disability are nine times more likely than non-autistic adults to die from suicide—a truly shocking statistic. Mencap’s research shows that almost a quarter—23%—of healthcare professionals have never received training on learning disabilities, and almost half believe that has contributed to avoidable deaths. Beyond nurses and doctors, we need to train NHS workers such as receptionists and facilities managers on how small adjustments can hugely increase access for disabled and autistic people.

I am grateful for the opportunity to open this debate on behalf of the Petitions Committee. Paula McGowan’s powerful testimony shines a clear light on what needs to be done. The case is clear. We cannot risk any more cases like Oliver’s. This cannot afford to wait.

--- Later in debate ---

[Daniel Zeichner]

I thank all hon. Members for their excellent contributions today; both the speeches and the interventions have been of a very high quality and very thoughtful. Of course, they have also widened the debate beyond just the mandatory training issues to how people with autism and learning disabilities are treated in general. I thought the points about the employment gap in particular from the hon. Member for Dudley South (Mike Wood) were very telling.

I suppose what struck me when I saw Paula’s original statement was the point where she urged staff not to always reach for the pharmaceutical approach. Important though mandatory training will be, and it is vital that we achieve it, I also think that training takes us only so far. I think that staff throughout the national health service need to have the time, the space and the confidence to treat people as individuals and hear what they are actually saying to them. That is a big transformation and a big challenge for everyone in public services, and I hope that it is something that we can try to work towards.

In conclusion, on behalf of all Members, I pay tribute once again to Oliver’s mum, Paula, for the very, very powerful campaign that she has waged. I think we can all agree that the final outcome from this process that we would like to see is the Oliver McGowan mandatory training being applied as soon as possible.

Question put and agreed to.

Resolved,

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