Autism and Learning Disability Training: Healthcare Professionals

Baroness Keeley Excerpts

Monday 22nd October 2018 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

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 the Member for Cambridge (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 the hon. Member for Central Ayrshire (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 the Member for Sheffield, Hallam (Jared O'Mara), who spoke very movingly. We also heard from my hon. Friend the Member for Hampstead and Kilburn (Tulip Siddiq) and the Scottish National party spokesperson, the hon. Member for Livingston (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.

[The Minister for Care (Caroline Dinenage)]

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 the hon. Member for Cambridge (Daniel Zeichner) for bringing the case before us and the Petitions Committee for permitting the case to be brought. I also thank the hon. Member for Sheffield, Hallam (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 12 September, we set out a clear action plan to make progress against each of its national recommendations. The key theme is that of facilitating better care for people with a learning disability by sharing information on their needs and by making reasonable adjustments to improve access and the responsiveness of services to meet those needs. It highlighted some actions that I am glad to say were already well under way, as well as many new actions.

[Barbara Keeley]

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?

[Caroline Dinenage]

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.

[Barbara Keeley]

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?

[Caroline Dinenage]

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.

[Barbara Keeley]

Can the Minister give a date, rather than a seasonal time?

[Caroline Dinenage]

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.