Autism and Learning Disability Training: Healthcare Professionals

Philippa Whitford Excerpts

Monday 22nd October 2018 Westminster Hall

[Daniel Zeichner]

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

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

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

[Daniel Zeichner]

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

To conclude Paula’s statement:

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

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

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

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

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

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

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

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

[Daniel Zeichner]

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

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

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

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

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

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

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

The report explains:

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

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

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

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

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

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

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

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

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

[Dr Whitford]

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

[Daniel Zeichner]

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

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

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

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

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

--- Later in debate ---

[Mike Wood (Dudley South) (Con)]

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 the hon. Member for Cambridge (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.

[Dr Whitford]

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.

[Mike Wood]

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.

[Dr Whitford]

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.

[Mike Wood]

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.