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
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
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.”
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?
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.
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.
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.
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.”
“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.
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.
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.
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?
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.
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.
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.
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
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 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.
“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.
He was admitted back to the same hospital on
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.
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.
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
“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 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.
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?
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.
“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.
It is a pleasure to serve under your chairmanship, Dame Cheryl. I pay tribute to my hon. Friend Daniel Zeichner for a moving and harrowing account of what happened to Oliver, and to Chris Skidmore, the local MP, who has campaigned tirelessly on this issue.
I also pay tribute to Paula McGowan, who has shown such bravery in campaigning for her son. She and her family have felt such suffering following the death of Oliver nearly two years ago—I cannot imagine the pain of losing a child. I speak for all Members when I say that our thoughts are with her and her family.
The cross-party support for the petition shows the strength of feeling of all Members of this House, who want those with learning difficulties and disabilities to receive the best possible treatment. We all want to see NHS staff equipped to make the adjustments that so often prove the difference between life and death. I am sure the Minister agrees.
It is welcome that the Government are acting broadly in line with the recommendations of the learning disabilities mortality review. However, I felt their response fell short in one particular area. Page 19 refers to the introduction of an oversight group that allows for the input of self-advocates. That is positive, and I welcome that, but the response does not spell out how success will be measured, how targets will be checked, who will decide on service changes, nor how the implementation of changes will be assessed. More effective training programmes, such as those demanded by this e-petition, are developed and led by those with learning disabilities. The Government could have been more explicit in acknowledging that.
I want to speak about Treat Me Right: an inspirational autism and learning disability awareness training programme operating across north-west London and in my constituency. For Members and those in the audience who have not heard of it, Treat Me Right has been running for 25 years. It is delivered by Certitude, a not-for-profit social care provider. The programme was commissioned by the north-west London collaboration of clinical commissioning groups last year, following a grant from Health Education England.
Although reducing the number of avoidable deaths will require a broader strategy, Treat Me Right’s impact is beyond doubt. Having been co-founded by those with learning disabilities, it is now led by people with learning disabilities. It provides essential support for A&E staff, mental health teams and the London ambulance service.
Between June 2017 and March 2018, Treat Me Right trained 942 healthcare practitioners across north-west London in learning disability and autism awareness, and it will train an additional 800 NHS autism champions by the end of this year. The statistics do not tell the full story of the programme’s success, but they do go some way to explain why I and other MPs nominated it for the care and compassion award at this year’s NHS 70 awards.
There are two clear components in the petition’s demands for NHS staff to receive mandatory training: first, the need to pinpoint critical reasonable adjustments for patients with learning disabilities; and secondly, the need to alter a damaging culture that fails people with autism or learning disabilities, preventing them from receiving the treatment they need. On that, Mencap’s statistics are striking: just under two thirds of healthcare professionals—64%—said that a lack of practical resources for them and their colleagues contributes to the problem of avoidable deaths. That is shocking. Just over a quarter say that negative attitudes towards those with autism might also be a contributing factor.
Programmes such as Treat Me Right are proving to be an effective remedy. Trainers explain clearly how autism or their own learning disability feels for them, so NHS staff can learn about uniquely challenging situations that may arise during the course of their work. In addition to training, the programme offers two tailored health toolkits for people with autism—health action plans and health passports—which are essential for signposting the critical adjustments necessary on their arrival at A&E and other departments.
The Government’s response to the review talks of ensuring
“vigilant and proactive support for people with a learning disability.”
How better to achieve that than through mandatory training, and who better to lead that training than those who know the specifics of living with autism or a learning disability?
I welcomed John, a co-founder of Treat Me Right, to Parliament earlier in the year. He felt strongly that the training programme allowed him to share his experience of living with Down’s syndrome with NHS professionals, to tangible effect. His experience is reflected in the comments of healthcare professionals across Hampstead and Kilburn who have benefited from training by Treat Me Right. The team at Brent psychological services said that the training, especially on autism spectrum disorders, was like
“receiving a pair of glasses after not knowing you needed them”.
Such testimonies, and the fact that approximately 3,300 adults are registered with Brent CCG as having been diagnosed with a learning disability, mean that the work of Treat Me Right could eventually offer vital healthcare support to thousands of my constituents who have been suffering for years.
It sounds like a fantastic organisation. I wonder whether those lessons could also be rolled out to other public services. I have been talking to Avon and Somerset police, where there have been issues about tasering people who clearly should have been treated differently. Does my hon. Friend agree, particularly as the criminal justice system and the police often come into contact with people with autism and do not know how to treat them?
I absolutely agree with my hon. Friend that the issue is not confined to the healthcare services. It crosses borders, and she made an effective point about the police and others dealing with the challenges of autism that arise in everyday life.
On a similar point, does the hon. Lady agree that staff in the Department for Work and Pensions should also be trained? Some of my constituents have not have positive experiences of the welfare system. I know that the staff have a difficult job, but often people are marginalised because of a lack of understanding.
Similar things come up in my surgeries. People come in and complain bitterly about the way they have been treated, simply because they have not been understood by service providers, whether at the Department for Work and Pensions when they needed social security, or elsewhere.
I would like the Minister to address how she will ensure that those with learning disabilities and their families will be treated as equal partners in setting targets for success and in deciding whether change is happening in the right way. How does she anticipate that all healthcare professionals, and not just a few, will get good quality learning disability training, and how will the challenge of resourcing that be met? We have heard Mencap’s estimate that 1,200 people with learning disabilities die every year because of an avoidable lack of access to good healthcare: it was pointed out earlier in the debate that it seems more deaths are of young people, which is shocking. I hope that the Minister will address that situation, which is simply horrifying. I hope that, in addition to answering my specific questions, she will explain how her Department is accelerating its efforts to reduce that figure dramatically in the coming months and years.
I pay tribute once again to Paula McGowan and those seated in the Public Gallery today, because I know it has been a difficult campaign so far.
It is a particular pleasure to serve under your chairmanship this evening, Dame Cheryl; we are debating an issue on which you have done much, not only to raise awareness, but to transform the legislative framework in which we operate. I thank the Petitions Committee for ensuring that time was made available for the debate, and congratulate Daniel Zeichner on his opening speech. I pay tribute to Oliver’s family in particular, and to the many other families who have done so much and worked so hard, exhausting reserves of energy and emotion that I am not sure many of us could have found, to ensure that some public benefit can come from their individual personal tragedies.
I have rather less direct personal experience of autism than many of the Members who will contribute today, but as a former governor at a special needs school that had a particular focus on autism I am familiar with many of the issues that Members have raised. As of last week I am a proud officer of the all-party parliamentary group on autism. I am fortunate to benefit from the fact that many constituents contact me to give me advice and tell me of their and their families’ experience in the healthcare system. I also benefit from the advice and experience of my former colleagues, the staff and governors at the school, and the National Autistic Society, which does much important work to push forward the agenda.
As has already been said, there are clear healthcare inequalities between people who have autism and the general population. That is clearly recognised by the Government. It was recognised in their mandate to NHS England and, of course, as one of four clinical priorities in the 10-year plan published last month. Those inequalities clearly have many causes. There are many co-factors more likely to affect people who have autism, such as issues to do with unemployment, mental health and poverty; but one of the most obvious ones, which is referred to in the petition, is the interaction between the national health service and healthcare professionals, and people with autism.
For many of us it can be hard to decipher what medical professionals tell us, particularly when we are very ill and perhaps not thinking as straight as we might. For people with learning disabilities and communication difficulties, the difficulty is on an entirely different scale. For many people with autism it is a question of heightened difficulty not only in understanding what they are being told, but also, of course, in communicating how they feel physically, emotionally and mentally. It is therefore essential that understanding of autism becomes part of the mandatory training for healthcare professionals, just as it is finally becoming a core part of initial teacher training.
Like other hon. Members, I am pleased to see that the new core skills education and training framework finally sets out proposals for a tiered approach and levels of training depending on levels of contact that can be expected for people with autism. There are half a million people in England—more than 1% of the population—who we already know have autism, so there can be barely any part of the healthcare system in which any worker is unlikely to have regular contact with patients with autism and their families. So it is a core part of their job and responsibilities to be able to respond, and to make necessary adaptations in the way they behave. That is a core part of being a healthcare professional.
There are throughout society people with varying skills, disabilities or learning difficulties, so do not we need to bring that right into medical and nursing school, and try to have a philosophy that counters what we see in society? That, frankly, is attacking the “other”. We have had so much of the politics of “other”, and attacking the “other” socially, and we need to try to get rid of that when people are at school and in medical and nursing school—not just when they have qualified.
There are two important and slightly distinct points there. For mainstream education it is vital that an understanding of autism and other learning disabilities is part of personal, social, health and economic education—I do not know whether we still call it that—for precisely the reasons that the hon. Lady describes. Of course, in medical or nursing school it is vital that there is a core level of understanding of the issues for autism and other learning disabilities and of the impact they have on how people need to do their job once they have qualified and are practising and in work. That needs to be embedded from day one, but just as importantly, it must be reinforced and built on with continuing professional development.
Although there is clear evidence of inequality in many health outcomes, there is little concrete evidence yet known about how the wellness of people with autism compares with that of the general population. I hope the new framework will explicitly cover primary and community health as well as acute healthcare. Primary and community health is where much of the early interaction with patients and the wider population takes place. It could not be more important that our GPs and community healthcare staff understand the particular issues faced by patients with autism and their families, and how they should respond to them.
However, I hope the framework will go slightly further than that. I am sure that you, Dame Cheryl, might have wished to raise this issue were you not chairing the debate: the need for a GP autism register, as recommended by the National Institute for Health and Care Excellence, with a relatively easy and simple code so that people’s progression through primary healthcare pathways and on to an acute healthcare or a mental health setting can be tracked and we can have a better understanding of the impact of autism and learning disability on wellness and the particular challenges and experiences of people with autism.
The hon. Gentleman touched on poverty earlier. The learning disability employment gap is over 90%; if we actually want to look at the wellness of people with learning or communication difficulties, we as a society must include them, rather than parking them on the side and wasting their talents.
The hon. Lady is right, and if I may give a quick plug, the all-party parliamentary group has done some important work with the National Autistic Society on precisely the issue of autism, employment and education. I understand it will be published shortly and I hope it provides a focus for a future debate.
Following on from that point, does the hon. Gentleman agree that people with autism and additional support needs have a huge contribution to make to our economy and society? As someone who has had a number of people on work experience, they have helped me to see the world in a different way. I am sure the hon. Gentleman will have seen “The Curious Incident of the Dog in the Night-Time”; when I went to see that in the west end, it was a turning point for me in understanding the world and a little window into how people with autism see it.
The hon. Lady is absolutely right. That enormous employment gap is a tragedy in terms of not only the lost opportunities for those people directly affected, but the wasted opportunities for the many employers who could be benefiting from the skills of people with autism and other learning disabilities, and for wider society, which is losing the contributions that they can make.
Finally, I will touch quickly on the issue of mental health. Autism is not a mental illness, but we know that people with autism are much more likely to be affected by many mental illnesses, particularly anxiety-related illnesses, than the general population. We need to ensure that the new framework is properly embedded across mental healthcare as well as physical healthcare, so that our mental health services can ensure that people with autism get the proper services they need. Far too often, people with autism find not only that their condition means their mental health problems are not properly diagnosed at an early stage, but that, if diagnosed, their condition can interfere with their receiving the appropriate treatment in a way that might be expected elsewhere.
We must ensure that autism is one of the four clinical priorities right across the healthcare system and that the training our healthcare professionals receive reflects that. Only then can we start to address the healthcare inequalities that we see in this country and, hopefully, try to ensure that there are fewer repeats of the terrible stories we have heard this afternoon.
Before I call the next speaker, I think that, without compromising the objectivity of the Chair, I should probably have put on record at the beginning of this sitting that I currently chair the all-party parliamentary group on autism, in case people have not gathered that by this stage. Secondly, I apologise for the temperature in this room, which is below what I would consider comfortable standards. We have made inquiries and unfortunately we cannot adjust the temperature unless the room is vacated and the engineers come in to look at the equipment. I apologise for that, but, unusually, if anybody wants to put on their coats, they are welcome to. I understand that some people are feeling very cold in this environment and I can only apologise.
It is interesting that you mention the temperature, Dame Cheryl, because I am the first autistic MP and a symptom of my autism is that I prefer the cold and get really irritated and anxious when it gets just above body temperature. This is perfect for me—I am wearing a T-shirt.
Yes. This is one of those circumstances where Parliament has worked out in my favour, because so far my autism has not been taken into account by Parliament.
I have asked for adjustments from the Speaker’s Office so that I can comfortably speak more in the Chamber, because with things such as shouting, when everyone is heckling, the aggression and the loud noises mean I cannot cope. I have only been to Prime Minister’s questions once because of all the shouting. A Conservative MP, who I believe was James Duddridge, was not wearing a tie, and that adjustment was made in part with reference to me, because of my cerebral palsy. Much like Oliver, I have anxiety, cerebral palsy and autism—Oliver had those three—and on top of that I have depression.
There is something called comorbidity, which means that if someone has one disability, they are likely to get another. In the autism strategy of 2009 and its update for 2014, I cannot find the word comorbidity. It is a word that needs to be in the lexicon of Government and politics, the NHS and education. The same can be said for intersectionality, which is basically about the negative symbiosis between different marginalised groups and different factors. We need to look at that, and at how being disabled means that someone is more likely to be socioeconomically disadvantaged, including by being on benefits, unemployed or in prison.
Going off on tangents is also a quirk of my autism—I was talking about wearing a tie in Parliament and how the hon. Member for Rochford and Southend East was not wearing one. One adjustment that Mr Speaker kindly made was that I should not have to wear a tie, because my cerebral palsy and the co-ordination difficulties that I have with my autism mean that I cannot do a tie. Also, wearing a clipper tie will irritate the skin around my neck. The hon. Gentleman was not wearing a tie the first time I was at Prime Minister’s questions, and several Labour MPs behind me shouted at him, “Wear a tie, you scruff.” Imagine how much that hurt me. I turned around and looked at them and shook my head, but I may as well have been invisible.
This is not only about my treatment by Parliament but by the Labour party; for those who think Parliament has not made many adjustments or treated me right, Labour is another thing entirely. I am not talking about Labour as a whole. I am talking about the leadership and the people who run it, and the people who run the application process. I was not listened to or asked how they could help me. They made the sum total of one adjustment for me, which was to give me an office near the Chamber.
However, I am not here to talk about me. I am here to talk about Oliver. Some people say that people with autism do not have the capacity for empathy, including Simon Baron-Cohen—the cousin of the actor who played Borat—who came up with the empathising-systemising theory. That does not resonate with me, because I can systemise and empathise, and I want to be an autistic person who gives everybody a lesson in empathy. Think about Oliver. That is not just a name, but it is good that we give him a name, because disabled people are so often treated as statistics on a balance sheet—“Can we afford to spend this money on disabled people?” The key word in “disabled people” is “people”. We are people, with names.
Let us take a moment to think about Oliver. Imagine what it would have been like for him, being given that medication and being bullied and being scared, and his anxiety going through the roof. He did not know what was happening. He looked and saw his mum and dad, who were in a state, and the doctors would not listen to them. He says, “Mum and dad, help me. Help me.” Just think about what that would be like. [Interruption.] No. I am autistic. Do not do that.
Think about Oliver’s mum and dad. They have lost their son. That could have been my mum and dad. A year ago, I tried to hang myself in a hotel over the road, because people were bullying me over things that I did not understand when I was 20 or 22. They made false accusations of sexism and homophobia. They did not listen to the interviews I had done. They did not listen to me talk about how I am an intersectional feminist and about equality. They did not listen to me when I said that my local pub, where I have been going all the time for 12 years, is a gay bar.
I used homophobic words, but they were the words of the time; they were on the Eminem record that I listened to at the time. It was before November 2003— [Interruption.]
You are giving a very powerful testimony, but I hope that you may try to confine your remarks to the subject of the petition in hand. That would be helpful to me in the Chair. Thank you.
I mentioned that I go off on tangents; this is an example. Basically, there is a tendency in type 1 autistic people to mimic both the world around them and their peers, to try to fit in and not get bullied. That is what I was doing, and my bullying is an example of how people with autism are misunderstood and not listened to. It has huge parallels with what happened to Oliver and with the autistic people who my hon. Friend Daniel Zeichner says have committed suicide.
I managed to stop myself—Lord knows how. It was probably because I thought of my mum and my sister and my niece and my nephew and my dad. That is probably what anchored me and brought me down off that chair—well, that and the fact that I could not climb it properly because of my cerebral palsy. That sounds like a joke, and sometimes we have to laugh at our disabilities, because it is all we have. I mastered humour and making my friends laugh, because that makes people like me. Sometimes people have to do that, because of all the bullying they get over their autism and all the misunderstandings, like those Oliver went through. Sometimes all you can do is laugh.
However, I hope that, at this juncture, people do not laugh but take a moment to reflect on what it is like for Oliver’s parents, and what it was like for Oliver at the time his life ended. I thank Oliver’s parents for bringing the petition to the Chamber, and I thank every Member here. I am being non-partisan—I am an independent Member—and I ask Members to please show the video of the debate and give copies of their speeches to their colleagues in their respective parties. I am just riffing, as Members can tell, but by showing their colleagues the video on parliamentlive.tv and giving them copies of their speeches, they can spread the word that people with autism are being misunderstood.
One fifth of the UK population are in the disability community, and a quarter of people will have mental health disabilities at some point during their lives. We are not being listened to and we are not being understood. Our parents are not being listened to. The respective experts in clinical psychology and psychiatry and medicine are not being listened to. It is time that we were listened to and what we want acted on.
It is time that the laws that are already in place, such as the autism strategy, the duty to make reasonable adjustments under the Equality Act 2010 and disability discrimination law, are acted on. Let us have full legal aid, and let us expand the definition of corporate manslaughter, because I believe that what happened to Oliver was corporate manslaughter, whether that fits with its definition in law or not.
It is a real honour to follow Jared O'Mara, who defeated a colleague of mine at the last election. It is very powerful to hear from somebody who is directly affected. However, it is also a reminder to us all how difficult it is for an institution such as Parliament to be truly inclusive and to make sure that everybody who lives in this country has their voice heard.
I pay tribute to Oliver’s family, and I echo the cross-party agreement on this issue. I am the MP for their neighbouring constituency of Bath, and since Oliver was a member of Team Bath, I feel that he is very much part of the Bath family. I say to his family: your campaign will become my campaign.
There are often shocking misunderstandings or misconceptions about people who suffer from autistic spectrum disorder—ASD—or mental ill health, and I find that the two are mixed up in an alarming way. ASD is a learning disability, not mental ill health, and it is important that we separate the two. Mental ill health might be an additional diagnosis, and many people with ASD also suffer mental ill health, but they are not the same. Mental ill health is often a consequence of misunderstanding and isolation, and can be avoided if a person with autism is diagnosed early and treated accordingly. Early diagnosis is therefore crucial to addressing not only the issue itself but the mental ill health that might be a consequence of it. All too often, even once people have an ASD diagnosis, mental illness can be overlooked. The National Autistic Society estimates that mental illness is far more common in people with autism than in the general population.
The debate is focused on training for health professionals to diagnose and understand autism better. So far, the Government have done very little on that. The petition was created by Paula, who is here today, and we have heard powerful testimony about her son, Oliver. I do not need to go over all the details of that, but I understand entirely how the inquest’s outcome must have been devastating the family. Clearly, something went awry. Our laws and regulations are not fully clear about the proper training that should be given, but Paula is in the petition. Her son could possibly still have been here with us. All of us here are truly sorry, and we need to do something about it.
I rise as the Member of Parliament for Bristol North West, which contains Southmead Hospital: it was part of Oliver’s story, from which lessons need to be learned. Does the hon. Lady agree that the important point here is that we evidently have strong cross-party consensus; that we must now focus our efforts not just on debate and consultation but on achieving real change in the health service and our public services generally and right across our country; and that today’s debate gives us the impetus to do that?
I thank the hon. Gentleman for his intervention. I have said at another occasion today that the word “Parliament” comes from the French word “parler”, which means to talk, but we are also here to take action, so we must stop talking and take action. The issue of mandatory training is something that we can fix or determine here, and I very much hope that the Government will take that on board.
The urgent need for better training on autism and learning disability and the complications of the condition could not be shown more starkly than by the failings in Oliver’s case. In February, the charity Mencap launched the “Treat me well” campaign, which is aimed at transforming how the NHS treats people with a learning disability in hospital. In particular, women with a learning disability suffer disproportionately from health inequalities. We have heard the statistics today; they die on average 29 years before women in the general population, and men with a learning disability die on average 23 years before those in the general male population. That cannot be overlooked. We have also heard these figures today, but that does not matter—it will do no harm to repeat them: a YouGov survey conducted in 2017 found that nearly one quarter of the health professionals surveyed had never attended any training on learning disability, and two thirds wanted to have more training, so what are we waiting for?
Any illness or disorder that is either misdiagnosed or diagnosed late leads to far greater problems down the line. Early intervention depends on early diagnosis, and early diagnosis on training of those who come into contact with the sufferers. We are calling today for better training of healthcare professionals, which is an obvious start, but why not go even further? Let us look at the settings to which young people are exposed from an early age—namely, nurseries and schools. Given that ASD is so widespread, nursery nurses and teachers should receive at least some basic training to recognise the early warning signs. Far too little is being done. In my constituency of Bath, we have an autism board, but it rarely meets and has not even set up a work plan yet. Clearly, none of this is good enough.
ASD and learning disabilities can be successfully treated to give sufferers a full life. The earlier we diagnose the problem, the better the outcome. Many people with ASD also suffer from mental health problems, often as a consequence of not being diagnosed early enough. Let us end this tragedy. I fully support the recommendations that have been made, and I hope that we have the cross-party consensus to really do something quickly.
It is a huge pleasure to serve under your chairship, Dame Cheryl. I know that other hon. Members have said this, but the work that you have done in this area, and the work of others in this Parliament, is hugely important, and its importance has never been more obvious than today. I have no direct experience other than the constituency cases that I mentioned earlier, but the level of emotion and empathy in the Chamber today is raw. As chair of the all-party parliamentary group on deaths abroad and consular services and assistance, I have recently taken evidence from families who have lost loved ones abroad, albeit in different circumstances. Hearing about the circumstances of Oliver’s death, and knowing that his mother and his family are here to listen to the debate, only highlights the importance of doing something and doing it well. There can be no greater endeavour for a parliamentarian than to right a wrong by taking an experience that has been devastating or traumatic, or resulted in someone’s needless death, and trying to turn that experience into a positive—into change that will mean that others do not suffer in the same way.
Daniel Zeichner opened the debate with an excellent contribution. He took us through the details, of Oliver’s death, as Chris Skidmore did, and I have to say that although I had read some of the details, I was not aware of just how devastating and difficult what happened was, how complex Oliver’s needs were and how badly he and his family were let down.
We must be very careful, because we live in a blame culture. We live in a culture in which, when things go wrong, the finger is pointed. We all know that NHS staff, in whatever part of the UK, do their very best, but there have been failings and the lessons must be learned. Oliver’s death cannot be in vain. I therefore hope that the Minister will detail what she plans to do and give Oliver’s family and us all a sense that there will be change. I have no doubt that the UK Government are very much behind the wish to change the system.
Tulip Siddiq talked about the work being done in her constituency through the Treat Me Right programme and the impact that that has had in north-west London. I want to mention briefly the Beatlie campus in my constituency of Livingston. The Beatlie School sits at the back of my mum’s fence, and the building in which it is housed was my old primary school. When it shut, that was a great trauma for the local community, but it fills me with great pride that it is now a school that supports children with additional support needs: autism and a range of issues. Recently, it was awarded a Gold: Rights Respecting award by UNICEF. Its headteacher, Carol Robbie, and her staff do an incredible job, so I want to pay tribute to them.
Mike Wood spoke about his experience of being a governor of a school that supports children with additional support needs. Many of the speakers today, including my hon. Friend Dr Whitford, have talked about the need for a tailored but collaborative approach. That is particularly important. In Scotland, we have championed partnership working in many of our local authorities, and we have particularly done so in West Lothian.
The point has been made that it is not just healthcare workers who should be trained but people who will be coming into contact with those with additional support needs, including in relation to autism. That is incredibly important. Whatever area we are talking about, whether it is housing, welfare or whatever, staff need to have proper and appropriate training, as do businesses. The debate has been very much opened up, and we must look at the improvements that need to happen across the board, not just for NHS staff.
The Scottish strategy for autism was published jointly with the Convention of Scottish Local Authorities in 2011, and our Government in Scotland committed £13.4 million over four years to improve the lives of autistic people and their families and carers. A review was published in 2014, and I will just share some of the findings. There was the development of a menu of interventions, which meant a guide to help autistic people and their families and carers to identify available advice and support, and a mapping exercise, which sought to map out and better co-ordinate local services. That coincided with £35,000 for each of our 32 local authorities to encourage local and national organisations to develop projects to improve the delivery of local autism services. In my constituency, a number of organisations have benefited from that.
[Ian Austin in the Chair]
In 2015, the strategy was refreshed and reframed into an outcomes approach, and it has had a significant impact on each local authority in Scotland and their services. We are not perfect, but we have done a significant amount and we are absolutely dedicated to ensuring that whatever an individual’s needs are, they are properly catered for.
I pay tribute to Jared O'Mara. It is hard to know how to respond to his speech, because it was so powerful and so necessary. He spoke not only about autism and his needs, but the way that this place is structured. We have said it many times—I will never forget that feeling of anxiety the first time I sat in Prime Minister’s questions. It was so alien. I witnessed such boorish and unbelievable behaviour—I have never seen anything like it in my life. It is not a natural environment for anybody. It fills me with great sadness that we have not been able to move on and that he still feels that he cannot attend Prime Minister’s questions. I am glad that some reasonable adjustments have been made. The brave and direct way that he spoke about his experiences will be shared, and I give him my commitment that I will share it on social media and beyond, because I think it is incredibly important. If we are going to be truly diverse in this Parliament and make better decisions for the people across these islands, it is vital that we have Members with different needs, abilities and perspectives, and the hon. Gentleman has epitomised that.
I cannot imagine what Oliver’s family’s experience has been like. What Paula and her family have done takes incredible bravery. I wish them well with their campaign, which we will carry in our hearts. I hope we will all play our part, and that the Minister will give Oliver’s family positive words and actions, to ensure that nobody ever again goes through the experience that he and his family did.
I am pleased to speak with you in the Chair, Mr Austin, which I think is a first for you and me. I pay tribute to Dame Cheryl—who was in the Chair until a few moments ago—for her work in this House on autism. I thank the Petitions Committee for bringing forward this debate. It is sometimes important that the Petitions Committee does not wait for 100,000 signatures, but is prepared to move earlier on an important topic. I particularly thank my hon. Friend Daniel Zeichner for his excellent speech.
I know people were anxious about this debate, because it coincides with the statement from the Prime Minister on the October EU summit, but we have heard from a number of hon. Members. There were interventions from my hon. Friends the Members for West Ham (Lyn Brown), Hartlepool (Mike Hill), Bristol East (Kerry McCarthy) and Bristol North West (Darren Jones), and Dr Whitford. We heard speeches from the hon. Members for Kingswood (Chris Skidmore), Dudley South (Mike Wood) and Bath (Wera Hobhouse), and my hon. Friend Jared O'Mara, who spoke very movingly. We also heard from my hon. Friend Tulip Siddiq and the Scottish National party spokesperson, Hannah Bardell. There were concerns about the clash in timing, which was really unfortunate.
Like everyone else who has spoken, I congratulate Oliver’s parents, particularly his mother, Paula McGowan, on their persistence in ensuring that Oliver’s case was brought to our attention through the e-petition, which now has 51, 351 signatures, according to the latest figure I have seen. She has raised the vital issue of how we treat people with autism and learning disabilities in our health and care services.
The e-petition, which calls for the introduction of mandatory training on autism and learning disability for healthcare professionals, states:
“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.”
The Government response says:
“Everyone has the right to high quality, safe health care so it is crucial that all health workers are given the skills and education to confidently deliver care that meets the needs of all their patients. This is a priority for the Government.”
If this is a priority, let us end this debate by discussing the action that we need to see.
Some 10 years ago, Mencap published the campaign report “Death by indifference” in response to the ongoing poor treatment and care in the NHS of people with a learning disability, and their premature and avoidable deaths. One of the main contentions in that report is that diagnostic overshadowing is a key barrier to people with a learning disability getting equal treatment. Diagnostic overshadowing is when doctors make dangerously faulty assumptions about people with a learning disability, revealing an overall lack of training, skills and under- standing. They may wrongly believe that a presenting problem is a feature of someone’s learning disability and that not much can be done about it, which can often lead to the wrong diagnosis of a medical condition that needs treatment. That report came out 10 years ago.
In its report, the former Disability Rights Commission called for “improved staff training” explicitly to reduce the risk of diagnostic overshadowing and unequal treatment.“Death by indifference” led in 2008 to the report “Healthcare for all”, an inquiry into healthcare for people with learning disabilities. Its first recommendation was that:
“Those with responsibility for the provision and regulation of undergraduate and postgraduate clinical training, must ensure that curricula include mandatory training in learning disabilities. It should be competence-based and involve people with learning disabilities and their carers in providing training.”
That was 10 years ago, but Oliver’s case underlines the degree to which people with learning disabilities and autism still do not get the healthcare treatment that they should expect from any civilised, compassionate society.
On a slightly different note—it is all of a piece—last week, I raised in the House the case of Bethany, a young autistic woman who is being held in seclusion in a private hospital, in a locked, cell-like room and fed through a hatch. We have heard too frequently in recent months of more cases showing the mistreatment, neglect and abuse of people with learning disabilities and autism.
Oliver’s tragic case typifies cases in which people with learning disabilities have died avoidably in healthcare settings. He was a young man with a full life expectancy, who had overcome so many challenges to excel as a footballer and an athlete. He inspired and enriched everyone he met, but he was let down repeatedly, because clinicians simply did not understand the nature of his autism.
Oliver’s death was the result of a catalogue of failures and communications that were not adapted to his needs. Repeated warnings that Oliver was not to be given antipsychotic medication were ignored with fatal consequences. The parallels between Oliver’s case and those reported 10 years ago in “Death by indifference” show just how little progress has been made in giving clinicians the right training about people with learning disabilities and autism. As my hon. Friend the Member for Cambridge mentioned, Public Health England’s 2016 survey found that only 17% of localities reported having an autism training plan across all health and care staff, while 10% reported having no plan in place.
Oliver’s case was included in the learning disabilities mortality review, which revealed scandalous health inequalities between those with autism and learning disabilities, and those without those conditions. Want of better clinical training causes those scandalous health inequalities. Men and women with autism, a learning disability or both simply should not die 20 or 30 years before those without either condition. That report was published on the morning of the local election results, when attention was inevitably directed elsewhere, which looked like an attempt to bury the findings, causing even more distress to the families of those who had died avoidably. In the words of Dr Sara Ryan, the mother of Connor Sparrowhawk, who tragically lost his life as a result of the negligence of Southern Health, the NHS trust charged with caring for him, it made it seem that the lives of their relatives “simply don’t count.”
As with earlier reports, the cases reported in the learning disabilities mortality review reinforce just how much more Government, and our health and care system, need to do to give people with autism and learning disabilities the good quality healthcare and social care that they ought to expect as a right, and to which they are entitled in law. The lack of training given to clinicians played a pivotal role in Oliver’s death and the deaths of many other people whose cases were included in that review.
As we have been reminded, almost one quarter of clinicians surveyed subsequently by Mencap revealed that they had never attended any training specifically on learning disability. More than half of clinicians would have welcomed more on-the-job training to enable them to provide better support. We have an NHS workforce that would welcome the training and a Government response that says that giving the skills and education to healthcare staff is a priority, so we now need to inject some urgency into moving forward.
Oliver’s case, the case of Connor Sparrowhawk and the cases of 1,200 people with learning disabilities who die an early death each year make that an urgent task. We need swift action, not further consultations. We need a culture change. Doctors are the decision makers and they must own the development of the training in autism and learning disability.
I hope the Minister will reflect on the debate and treat the introduction of mandatory training as an urgent priority. Can she tell us the Government’s timetable for implementing mandatory training following the close of the current consultation? What progress is being made against the recommendations of the learning disability mortality review, particularly the introduction of a named healthcare co-ordinator and the plans to help providers to make reasonable adjustments?
In the last 10 years, we have had reports, inquiries and reviews on the serious matters we have discussed in the debate. Now is the time for action to develop the training that clinicians and other staff working in health and care need. Now is the time for clinicians to own the culture change that would bring about what we all want to see—the Oliver McGowan mandatory training.
It is a pleasure to serve under your chairmanship, Mr Austin, and that of your predecessor, Dame Cheryl, who has done more to further the cause of people with autism than any other Member of Parliament. I put on record my thanks to all hon. Members who have taken part in the debate. There have been some impressive and high-quality contributions. In particular, I thank Daniel Zeichner for bringing the case before us and the Petitions Committee for permitting the case to be brought. I also thank Jared O'Mara for his testimony, although he is no longer here. I am sure we all agree that it was incredibly powerful, extremely important and exceptionally brave.
It is hard to hear the story of Oliver McGowan, which inspired the debate and the petition that triggered it. I am the mum of a teenage boy a bit younger than Oliver, so I find it heartbreaking to even think about what Paula and her family have been through. I have been in this role for nine months, and one of the great honours of the job is being able to speak to some incredible, awe-inspiring people, but surely the most amazing of them are the mothers who have turned the unthinkable heartbreak and anger at the loss of a child into a crusade for change.
Dr Sara Ryan, who has already been mentioned, whose son Connor Sparrowhawk drowned in a bath while under the care of Southern Health, is the most remarkable campaigner for the way that we support adults and children with learning disabilities. Another example is the incredible Paula McGowan, Oliver’s mum, who I met last month. To say that I feel humbled by her story is a massive understatement. The way that she has been fuelled by the unspeakable tragedy of Oliver’s death to fight, to battle and to campaign to ensure that other children and parents do not have the same experience is incredibly brave and courageous. She is nothing short of an inspiration, and she inspires me to strive to tackle the inequalities that people with autism and with learning disabilities face and to do my best to prevent further avoidable tragic loss of life.
The health inequalities between people with learning disabilities and autism and the general population are well understood—virtually every hon. Member present has mentioned them. In recent years, there have been ongoing efforts to address them, but the shameful case of Winterbourne View Hospital is an example of how things have not worked.
It is a sad fact that it takes an avoidable tragedy to spur the action that we want. Since then, significant programmes of activity have been devoted to tackling the inequality that has blighted the experiences of people with learning disabilities in society—inequality is not confined to health and social care. That activity is not only about reducing the number of deaths that may have been preventable, but about improving people’s genuine experiences of care, reducing the use of restrictive interventions, increasing health and wellbeing, and ensuring that people are not hospitalised when they can be better supported in the community.
The existence of the learning disability mortality review programme—LeDeR—testifies to our commitment to reduce the number of preventable deaths among people with a learning disability. LeDeR is focused on learning disability, but has important lessons that relate to the care of autistic people. The programme, led by the Norah Fry centre at the University of Bristol, was introduced to ensure that local evidence-based action is taken to improve support for people with a learning disability. The result is that commissioners are focusing their attention on their local mortality rates and the reasons for them, and are highlighting the further national action that is needed. We must learn from those deaths quickly and translate that learning into effective remedial action that prevents any repetition.
In May, the University of Bristol published the second annual LeDeR report, which showed that 13 deaths had involved circumstances where an individual’s health had been adversely affected by entirely avoidable external factors. The report also found that, based on the examples that were reviewed, the median age of death is 23 years younger than the general population for men and 29 years younger for women. It makes for shocking and chilling reading. LeDeR is ongoing, so many reviews are still to come. Since then, there has been significant action to increase the number of reviews undertaken, including NHS England investing an additional £1.4 million in support of them. Hon. Members from across the House will feel, as I do, that the report is a stark message that we need to do much more to ensure that people with a learning disability receive the best quality care.
In the Government’s response to the LeDeR report, which we published on
The Minister has used the word “action”. If we had been able to discuss the Government’s response to the LeDeR report, which came out the day before the conference recess, I would have said to her that there is very little action in it. The whole point of the cross-party feeling of the debate is that we want action. There are an awful lot of consultations in the response but, as I highlighted in my speech, we have had 10 years of reviews, starting with the report that came out 10 years ago. The Minister used the word action—can we not just get on with some?
We have accepted every single recommendation in the LeDeR report, and the only reason we are consulting on the recommendations about training is that we have to do that to introduce legislation and change the regulations. We need to do that properly and ensure that we take on board the experiences of people from a wide range of backgrounds so that it actually works. Training is already in the guidelines for healthcare professionals, but the hon. Lady and many other hon. Members have said that it is simply not happening. This is not about action for the sake of it or to say that we have ticked a box to make it happen, but about meaningful action that will save lives. That is why I want to get it right. I am not going to hang around; it will be done to a timescale, which I will explain more about in a moment.
An example of action is that NHS England is working with NHS Digital to add a reasonable adjustment flag to digital care records to indicate the potential adjustments that people with a learning disability may require. The flag will be available to all organisations that provide care. It will support improved communication between patients, their carers and clinicians and lead to more personalised, safer patient care and better outcomes. That capability is being developed for piloting in the NHS summary care records application this summer. We are also exploring with NHS England and NHS Digital the potential for a comparable autism flag.
We have also commissioned Oxford Brookes University to look into best practice in co-ordinating the support for people with a learning disability and a long-term condition. Hon. Members have raised the difficulties that autistic people and people with learning difficulties experience in communicating their needs to health professionals, and also highlighted the importance of hospital passports in overcoming these difficulties and ensuring that their hospital stays are safer and more comfortable. However, I know that Oliver had such a passport and it was not read, so that needs to be taken into consideration as well.
As part of our governance arrangements for the autism strategy, we have set up a task and finish group on health, care and wellbeing, which is looking at barriers to care. We will ask it to consider how we can best disseminate tools such as the hospital passport, to ensure that patients receive effective, personalised care.
Of the new actions, the one that most concerns us today is the commitment to consult on mandatory training. I believe that the steps we are taking will address the shameful inequalities that people with learning disabilities continue to experience. Everybody has the right to receive effective, compassionate and dignified care, and having a learning disability or autism should not be a bar to that.
I am absolutely committed to ensuring that all staff have the skills that they need, whether for learning disability or autism, to deliver excellent and compassionate care. We are already taking forward actions in this area, which I will set out before moving on to discuss mandatory training.
We have supported the development of the learning disability core skills education and training framework, which sets out three tiers of knowledge and skills in relation to learning disability. We are also working towards the development of an autism core skills and competency framework for health and care staff, and for staff in organisations with public-facing responsibilities.
In addition to the existing criteria for professional regulation and registration, there are also existing health and social care regulations that are designed to ensure staff have had appropriate training. However, it is clear from the tragic deaths of Oliver and the many, many like him that that is not enough; we need to go further. One of the recommendations in the LeDeR report echoes the petition in saying that there should be mandatory learning disability training for all health and care staff.
We welcome that recommendation and we have made a commitment to consult formally on it, and we will conclude the consultation by the end of March. I can also confirm that we will include autism within this consultation. My aim is not to mess around with this work, as I have already articulated; the Government’s plans will be published by the summer and regulations could be introduced by the end of 2019. A formal consultation is essential if we are going to change regulations, which is one of the routes by which we can ensure that training is absolutely mandatory.
I appreciate that several hon. Members have asked me specific questions about all sorts of logistical issues, what the content of the training should be and how it might be different for different staff groups. Of course those are all the sorts of issues that we will consult on. We need to canvass the widest possible range of opinions and we clearly are not in a position now to guess the outcome of the consultation. If it was up to me, I would want to embed this training in initial training through all the professional bodies, royal colleges and training providers, having it at all levels of health and social care, so that anybody who has any role in a health and care setting would be mandated to receive some level of this training, obviously with different levels of training for people who work in reception and for those who are medical staff.
One of the key elements of the recommendations in the LeDeR report is that people with learning disabilities should be involved in the training. We will work with people with learning disabilities and autism, and with the groups that represent them, such as Mencap, in shaping the consultation and identifying the key questions that we have to ask. I am absolutely thrilled to say that Paula McGowan has agreed to help us with this.
The petition also refers to mandatory autism training. Of course, LeDeR looks at the deaths of people with learning disability rather than autism, but when it comes to inequalities and the patient experience there are clear parallels between the experiences of both groups and in the sort of reasonable adjustments that might be made to support both groups. It would be a missed opportunity if we did not consider in our consultation the training requirements of staff to better support autistic people as well those with learning disabilities.
Our response to LeDeR and the implementation of Building the Right Support are part of wider efforts to tackle inequality for those with learning disabilities and autism. I will briefly highlight three of these efforts in particular that have great potential. First, there is quality checkers. NHS England is developing toolkits for GP services and mental health in-patient services. These will support people with a learning disability to act as quality checkers, to examine services from their perspective and to have a dialogue with providers and commissioners on what needs to improve.
Secondly, and so importantly, there is stopping the over-medication of people with a learning disability, autism, or both, which is known as STOMP. This national programme brings together multiple organisations in the health and care field, with a common purpose to stop the over-medication with psychotropic medicines of people with a learning disability, autism or both.
Finally, commissioning guidance on autism services, and an accompanying best practice toolkit for local health and care commissioners, are due to be developed shortly and are expected to be available by next spring.
As we develop the consultation on mandatory training, it is particularly helpful to hear these issues and concerns, which hon. Members and their constituents want to see being addressed. We will reflect on, and listen to, those issues and concerns in our consultation. The consultation document will be issued in the new year, giving us sufficient time to conclude the formal consultation period by the end of March, and of course I am extremely happy to discuss with any hon. Member, or any lord in the other place, any particular issue that they would like to see reflected and indeed tackled by the consultation at any time, either before or during the consultation.
I asked the Minister earlier whether she could give an outline of the timetable after the consultation. When does she believe that we will see regulations to make this training mandatory?
I believe I have already answered that question. I said that I would like the Government plans to be published by the summer and the regulations to be amended by the end of the year.
I am afraid that I am not the scheduler, but that would be my aspiration as the Minister. Obviously, I do not have the timing for the Government, the Chambers and what have you, but that is definitely my aspiration.
It is absolutely vital that we do everything in our power to get this matter right. We owe it to Oliver and to the many, many young people with autism or learning disabilities whose lives have been tragically shortened. We owe it to Paula and Tom, and to the many parents and family members who have suffered unimaginable grief. We owe it to ourselves—a country should be judged on how it cares for its most vulnerable and on this, we must not be found wanting.
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 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.
That this House
has considered e-petition 221033 relating to autism and learning disability training for healthcare professionals.