Autism and Learning Disability Training: Healthcare Professionals

Cheryl Gillan Excerpts

Monday 22nd October 2018 Westminster Hall

[Mike Wood]

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.

[Dame Cheryl Gillan (in the Chair)]

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.

[Jared O'Mara (Sheffield, Hallam) (Ind)]

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.

[Dame Cheryl Gillan (in the Chair)]

Every cloud.

[Jared O'Mara]

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 the hon. Member for Rochford and Southend East (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.]

[Dame Cheryl Gillan (in the Chair)]

Order. Please try to keep on the subject of the petition.

[Jared O'Mara]

I know, but it is relevant—hold on.

[Dame Cheryl Gillan (in the Chair)]

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.

[Jared O'Mara]

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 the Member for Cambridge (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.

--- Later in debate ---

[Wera Hobhouse]

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.

[Dame Cheryl Gillan (in the Chair)]

We now move to the Front-Bench spokesmen, and it gives me great pleasure to call Hannah Bardell.

Organ Donation (Deemed Consent) Bill

Cheryl Gillan Excerpts

Committee Debate: 1st sitting: House of Commons
Wednesday 12th September 2018 Public Bill Committees

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairmanship, Mr Wilson. As the Democratic Unionist party’s spokesperson on health, I add my support to the hon. Member for Coventry North West, who has endeavoured courageously to push the Bill through. Every one of us is greatly impressed by him. I put my hands on his shoulders last night and said, “You’re making history tomorrow, boy.” We are all pleased that he is able to do that.

I am also pleased that the Minister responded right away in a positive fashion and ensured that the Bill would become a law, through Government support. Today, as happens often in this House—we could probably see it happen a wee bit more, if we are honest—we can all work together collectively to change lives and make things better. It is important for me. The hon. Gentleman asked me if I would be on the Committee, and I was more than happy to do so, to add my support in a small way to the legislation coming forward.

Why is this important? Every one of us has told a story, and we do that because those stories shape who we are as individuals. I met a wee nephew, Peter, who was born with only one small kidney the size of the wee thumbnail on my hand, so from an early stage he was in need of a kidney transplant. The problem for him was that getting the right donor was difficult. At one time his mother was to be the donor, but then she fell pregnant and that was not possible. As it turned out, another kidney became available in the meantime, and from being the small boy who was not physically able to do much and whose face was—if I can use these words—“custard yella” because of his kidney malfunction, his life was changed. This wee boy loved racing motorbikes and wanted to do a newspaper round but could not do that, and the donation totally changed his life for the better. I was therefore keen to be on the Committee because right away I can see the benefits that will flow from this legislation.

The other story I want to tell is one that a gentleman from my constituency came to tell me. His son was injured in an accident in which unfortunately a lady was killed. Ultimately his son’s life-support apparatus and machinery was turned off. I tell the story because he donated all his son’s organs, which then gave life and improved lives as the organs benefited a number of people.

Before I became a Member of Parliament, I was on Newtownards council, which thought it would be good to create a memorial garden in the council’s area. We therefore have a memorial garden in the main town of Newtownards, where families who have lost someone, or whose family members’ organs have been donated—whatever the case may be—can go and have a wee bit of contemplation or quiet time for remembering. The reason I want to tell these stories is because they are all part of why we need the Bill to go through, and of how important it is for the Minister and the Government to support the Bill promoted by the hon. Member for Coventry North West.

The right hon. Member for Don Valley, who spoke before me, made a compelling point; everybody made a compelling argument. The right hon. Lady made a reference that I was going to make. I am glad that was done and I will do it again. In this House we always repeat things, but that is by the way. It is important that those who feel they cannot go with this can opt out. That is what the legislation does. It does not compel anybody to do anything, but it gives an opportunity. That is the important issue that the right hon. Lady drew attention to, which I wish to endorse.

I have opted to carry an organ donor card since I started driving, and that was not yesterday, Mr Wilson. In Northern Ireland, legislation requires someone to tick a box on their driving licence application to declare themselves a donor. I have been doing that all those years. I still have the wee donor card and the wallet, which is long-time faded, as it has been there for 40-plus years. It is important that we move this forward.

In conclusion, we have a consensus and a collective opinion. We see legislation that can change lives for the better. That is the great pleasure of coming here as a Member of Parliament. It gives pleasure to be an elected representative at any time, be it on a council, Assembly or in the House. To come forward and be part of a legislative change that brings good gives a good feeling. Today is a good day for Parliament. I thank everyone for their contribution, especially the hon. Member for Coventry North West, and the Minister for supporting the measure so enthusiastically. That means something to us all.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

Mr Wilson, it is a pleasure to serve under your chairmanship. I rise to support the amendments in the names of the hon. Member for Coventry North West and the Minister.

I rise only briefly to say that I am a convert. Originally, when I was Secretary of State for Wales, I was not convinced that an opt-out system would be beneficial. I have changed my mind; when the facts change, one should, as a politician, change one’s mind. One of the things that has changed my mind is personal contact with a family where an organ will be needed to save a young man’s life. There is nothing more powerful than having that presented to one as a politician. That means that all of us must have an open mind about so many things.

The way the trend has been going, particularly in Europe, is interesting. I think now more than 24 countries in Europe have some form of opt-out system. Although we have not yet really seen the benefits in Wales of the legislation that came in in December 2015, I frankly think that we need to improve the mathematical odds. We will do so only by creating a culture in which organ donation is spoken about, not in hushed tones or with accompanying difficulty, so that it becomes part of the common parlance.

The testimonies given by other Members in Committee show that the fact that a loved one may go, but parts of that loved one can contribute to saving or enhancing the lives of others, has to be a good thing. I support the amendments and hope the Bill gets a very fair wind so that it becomes law.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

It is a pleasure to serve under your chairmanship, Mr Wilson, and with colleagues across the Committee. Without exception, everyone in the room has been a passionate advocate for organ donation. I am grateful for all the efforts made to promote this important procedure and movement.

With your indulgence, Mr Wilson, I would like to reflect on some of the comments made by members of the Committee before I address the amendments in detail. The Government fully support the Bill and are grateful to the hon. Member for Coventry North West for promoting it. The amendments are a tidying-up exercise and I put my name to them.

Integrated Care

Cheryl Gillan Excerpts

Thursday 6th September 2018 Westminster Hall

[Luciana Berger]

I am listening closely to my hon. Friend’s remarkably informed remarks. Taking him back to his second priority, prevention, does he agree that the Minister should be thinking about what he should be doing beyond his own Department? The Minister and his colleagues in the Department of Health will not on their own be able to do what is needed on prevention as well as tackle this country’s mental health crisis and increasing lifestyle-related disease. If we are to address those challenges seriously, it will also be about what happens in our communities, our schools and our workplaces. That comes from local government and is what will ultimately make the difference.

[Dame Cheryl Gillan (in the Chair)]

I remind colleagues that interventions are meant to be short. I hope Members will be able to keep them a little briefer.

[Dr Williams]

I thank my hon. Friend for her informed comments. I agree with her. We need a cross-governmental approach, particularly for children. There is a glaring absence of a cross-governmental strategy that would enable us to focus on all the things that have an impact on children.

The third area I want to mention is legislation. Under current rules, clinical commissioning groups will remain the statutory accountable bodies, even as the relationship between commissioners and providers starts to evaporate. At the moment, STPs, where the providers and commissioners are getting together, are making decisions—often behind closed doors—which are then rubber-stamped by the accountable bodies, which are the CCGs. That does not feel to me like particularly good governance. Legislation needs to follow the new provision arrangements.

We might also need to consider legislation to improve information sharing. The duty to share information—the eighth Caldicott principle—is often forgotten. In my experience the biggest barrier to integration is the fear that NHS providers have about sharing information with other parts of the system, and their resistance to do so. We are not necessarily doing enough in legislation to protect that duty to share information in the interests of providing good-quality clinical care.

The current situation on procurement is very difficult for CCGs. The law says that many services have to be procured if they are over a certain value. CCGs, as small organisations with accountability for their local pot of NHS funds, genuinely fear legal challenge. When they ask lawyers they are, unsurprisingly, advised that they have to follow the law, but the political and NHS England leadership strategy is to integrate care, which often cannot be achieved when care is fragmented by putting services out to tender, and provided by numerous different organisations. Many CCG governing bodies want and need to be cautious. They are just not going to take the risk given the current legislative framework.

Quite simply, if we, as elected politicians, want the NHS to collaborate, we should legislate for collaboration. In my view, the Health and Social Care Committee should be an enabler of that process. We would like to provide pre-legislative scrutiny, but we would like first to ask the health and care community what changes in the law would enable them to achieve their goal of providing integrated care to patients. I would like to know whether the Minister agrees with that proposition.

My fourth point is that integrated care providers should be NHS organisations—a recommendation the Committee made in its report. There is a well-founded concern in the health and care community that, under current legislation, private companies might bid to win contracts to provide significant chunks of our health services. That concern could be alleviated if it were made clear that integrated care partnerships need to be NHS bodies. In their response to our report, the Government did not accept that recommendation, arguing that ICP contracts could be held by GP-led organisations. It would be a very good thing to have GP-led organisations running primary and community care and other parts of the health service, but I see no reason why those GP-led organisations cannot be NHS organisations.

It is a barrier to progress in the NHS that there are not community-based NHS organisations that GPs can lead and work for. I urge the Government to look seriously at the recommendations in the Institute for Public Policy Research report “Better health and care for all”, published in June, which suggests the creation of integrated care trusts in communities and a right to NHS employment within such organisations, which would provide all non-hospital care in an area.

My final point is about leadership. My hon. Friend the Member for West Lancashire (Rosie Cooper), who is a member of the Health and Social Care Committee but cannot be here today, has done significant work shining a light on leadership failures within the NHS. Integrated care is possible only if we have the best and most talented managers in the NHS. As was evident in the failure of management in Liverpool Community Health NHS Trust highlighted by Dr Bill Kirkup, we are far from achieving excellence and need to be certain we have the right mechanisms in place to ensure that we have only the best and the brightest. Will the Minister assure us that the Kark review will be expansive in its remit and that those NHS leaders charged with fixing the mess in Liverpool have been consulted for their expert views?

To conclude, the purchaser-provider split has not always achieved the best NHS care for patients. I welcome the step towards integrated care, but I do not think it will succeed when the legislation promotes, and sometimes mandates, competition. There is political will—certainly from the cross-party Committee—to work with the NHS and care system, including the NHS assembly, on proposals to change legislation, keep integrated care providers within the NHS, improve governance and remove mandatory competition. I hope the Minister will respond positively to those concerns. Integrated care has the potential to transform the lives of millions of patients in our health service. I commend the Committee’s report, and I thank the Government for the changes they are making.

--- Later in debate ---

[Justin Madders (Ellesmere Port and Neston) (Lab)]

It is a pleasure to serve under your chairmanship, Dame Cheryl.

I congratulate the hon. Member for Totnes (Dr Wollaston) on her knowledgeable and measured introduction to this extremely important debate. I also thank the Health and Social Care Committee for an extremely useful and detailed piece of work on a rapidly changing area. In her speech, the Chair of the Committee set out from a patient’s perspective why it is so important for us to have a more co-ordinated approach than we do. “Having to tell the same story over and over again” was a phrase mentioned by not only the Chair but a number of other Members, and we all recognise the frustrations that we and our constituents have when that occurs. She was right to say that it is important that we look at the subject primarily from the point of view of patients. Their experience has to be at the very front and centre of all our plans for the future.

The hon. Lady articulated clearly how the financial pressures in the existing legislative framework, which we have all talked about many times, can inhibit transformation. She was right to say that an earmarked fund for transformation has to be protected, and it should not just be a capital pot. She set out clearly the need for a degree of flexibility.

As always, it was a pleasure to hear my hon. Friend the Member for Stockton South (Dr Williams). He made a pertinent point about the challenge for integrated care partnerships: to be considered successful, they should make a difference for those with the greatest health needs. He is right that we need to do much better as a nation on health inequalities, but how we approach prevention and health generally in this country does not necessarily lend itself to that. It would be most welcome if we can tackle that as part of integrated care.

My hon. Friend also expressed the genuine concern about the risk that changes could affect performance quality and safety, which are the pillars of an excellent health system. He made a strong point about governance and how existing decision-making processes are probably the wrong way round. The report acknowledges that they are certainly cumbersome and do not lend themselves to streamlined decision making. He highlighted well the dilemma faced by CCGs when tackling that agenda. This place needs to take a lead on that. He concluded by saying that integrated care has the potential to transform the lives of millions of patients—that really underscores why it is so important for us to get the integration right.

The hon. Member for Strangford (Jim Shannon) made a typically thoughtful contribution. I agree with him about the need to bring people along with us when we set out our vision for the health service. The report touches on how that has not been as successful as we might like in recent years. His comments on the use of acronyms were particularly perceptive—they may initially save time, but they actually increase complexity. Although I agree with the sentiment that we should keep things simple, anyone who looks at the Health and Social Care Act will realise that at the moment we probably cannot achieve that readily.

The hon. Member for South West Bedfordshire (Andrew Selous) made an important contribution. No one will disagree with what he said about putting patients at the centre of all this and the quote he gave about the kind of care they want. I was very interested to hear about his visit to the Larwood centre in Worksop; that sounds like the kind of model that we need to showcase what a good new procedure looks like.

It is clear from reading the report that I am not alone in being critical of the way some of the proposals in the past few years have been communicated. I do not underestimate the damage that has done to public confidence in the aims of the policy.. Releasing the new draft ICP contract in the middle of the summer with no publicity has not increased transparency about the Government’s agenda. It was interesting that the report described how public understanding of the proposed changes has been seriously compromised by the “acronym spaghetti,” which a number of Members mentioned. At another point in the report there was a reference to the acronym soup of

“changing titles and terminology, poorly understood even by those working within the system.”

That highlights well the difficulty we all get into sometimes when acronyms can take over—that will resonate with anyone who is a member of a political party. The use of food terminology in the report shows that perhaps the author was a little hungry when they wrote it.

To reinforce the point, since the report was published we have ICPs on the horizon—yet another acronym. Although I appreciate that the change was made to avoid conflation with the American model of ACOs, it is clear that we do not need new acronyms, but a clear explanation from the Government along with a timeframe for what they are seeking to achieve and, importantly, the criteria they will use to determine whether those objectives have been achieved. The chief executive of the Nuffield Trust, Nigel Edwards, described this as

“perhaps the biggest weakness, not just with the STP process but arguably with the ‘Five Year Forward View’.”

It is clear from both the evidence sessions and the report itself that confidence in the Health and Social Care Act 2012 is at an all-time low and that the current direction of travel is really an admission that the Act has not worked. As we know, the last top-down reorganisation put in place a siloed, market-based approach that created statutory barriers to integration. Now, there is a lot of tiptoeing around the current legislation but we need an admission that that legislation has had its day. We need new proposals that are properly scrutinised.

The initial STP process was imposed from the top and was based around 44 geographical areas that were determined very quickly without recourse to the public. The Government acknowledged in their response to the report that perhaps that was done rather too quickly. Although some of the areas that emerged after that initial consideration had well-established networks of co-operation, in others there was a vast and unwieldy network of commissioners and providers with completely different approaches put together at very short notice. They were told to produce plans in private, again very quickly, which were focused not on integration but on organisations balancing their budgets. The only beneficiaries of this process seem to be the private consultants who were drafted in to complete those hastily arranged plans. As Professor Chris Ham pointed out,

“most STPs got to the finishing line of October 2016, submitted their plans and breathed a huge sigh of relief. No further work has been done on those STPs.”

Will the Minister set out what his plans are for those areas, as the local bodies appear to be working in a vacuum? They want to work together, but at the moment they have a legal duty to compete.

The report makes it clear that being asked to solve workforce and funding pressures caused by national decisions exacerbates tensions and undermines the prospect of each area achieving its aims for its patients. The report also makes it clear, as my hon. Friend the Member for Stockton South said, that where support has been provided towards integration, it has been directed at those who are furthest ahead. Those at the bottom of the curve, sometimes through no fault of their own, have lost potential funding that they need to work together to improve services. The chief executive of the NHS Confederation, Niall Dickson, told the inquiry,

“There is a sense in which some organisations find themselves in a really difficult position. Just taking their STF money away…is like somebody digging a hole. Instead of…helping them to get out of the hole, they jump in with a larger spade and dig even faster.”

That is a colourful and alarming analogy.

Where local areas are able to proceed to the next stages of integration, there is understandable concern among patients and staff about precisely what that will mean. The integrated care provider contract has the potential to radically alter the entire health and social care landscape, but is continuing without any parliamentary scrutiny. Despite assurances that it is unlikely that a private company will win the contract to be an ICP, it remains the case that it will be possible, as a number of Members have said. As we heard, not long ago the NHS was forced to pay out millions of pounds to Virgin because it lost out on a contract. I am concerned that we will face similar challenges if this process continues without legislation.

It is not scaremongering to say that the Government are introducing a contract whereby a private company could be responsible for the provision of health and social care services for up to 10 years—it is a fact and a possibility under the legislation. The Chair of the Select Committee was right to say it would be extremely helpful to have a clear statement from Government to rule that out. It is within the gift of Ministers to say there will be no private involvement in those bodies in future. Will the Minister make such a commitment today?

It is clear in the report that staff are concerned about the lack of engagement in a process that in some areas has excluded them completely. They are also concerned about their jobs being transferred to non-NHS organisations; hopefully the Minister will deal with that today. Almost half all NHS providers were in deficit last year and we are entering uncharted territory in budget setting, so what steps will be taken in the event that an ICP reaches a significant deficit position that it is unlikely to be able to resolve alone? Given the recent news that loan repayments to the Department of Health are now a bigger financial burden to providers than private finance initiatives, will the Minster confirm that deficits caused by structural funding issues will not be resolved through further loans being issued?

It is also clear from the draft contract that the ICP rather than the CCG will be responsible for managing demand. That raises questions about accountability and transparency. What safeguards are in place to prevent further rationing of services and who will be accountable in the event that patients want to challenge such a decision? These are important questions that I hope the Minister will respond to. Will he also commit to set out in full the direction of travel, the Government’s objectives, the criteria that will be used to determine when those objectives have been achieved, and a timeline for primary legislation, which just about everyone across the sector believes is needed?

[Dame Cheryl Gillan (in the Chair)]

Before I call the Minister I remind him, although I am sure he knows, that we like to leave two minutes for the Member leading the debate to make her closing remarks. I call the Minister.

Transforming Care Programme

Cheryl Gillan Excerpts

Thursday 5th July 2018 Commons Chamber

[Norman Lamb]

The hon. Gentleman makes a really important point, and I totally agree. I said at the start that this is not a great demand for a whole load more money. However, some up-front investment is needed, not only in establishing the facilities in the community, but in training people in the community, and I will come back to that in a little while.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

I add my voice to others in the Chamber in saying that I am very grateful to the right hon. Gentleman for securing the debate, and I hope to catch the Chair’s eye to make a contribution on autism. Does the right hon. Gentleman agree that when it comes to financing and co-ordination, a lot can be learnt from the National Audit Office report from 2017 that looked specifically at progress in the transforming care programme? Does he also agree that it is quite worrying that the NAO said that it was concerned about the programme’s overall progress and whether it would achieve value for money? One of the problems that it pointed out was that some of the local partnerships were

“struggling to put in place appropriate accommodation quickly enough”,

which had led to delays in people coming out of hospital and perhaps not the correct co-ordination to provide the services that are so desperately required by this vulnerable group of people.

[Norman Lamb]

I thank the right hon. Lady for her intervention, although it was a bit freaky, because I was about to come on to the National Audit Office report. She is absolutely right in identifying the criticism that it made of progress on this programme.

Let me deal with the numbers involved. As I said, the commitment was to close between 35% and 50% of in-patient learning disability and autism beds and to provide alternative arrangements in the community by March next year. The document, “Building the Right Support”, mentioned getting 2,600 beds down to between 1,300 and 1,700 beds, which is a very significant drop. Hitting the minimum drop that the Government committed to of 35% would involve the closure of 922 beds. Of that total, 531 still need to be closed in what is now a very short space of time.

The latest data, from the end of May, shows that there are still 2,400 people in institutions, 41% of whom are over 50 km away from home. I ask hon. Members to think about what that means. Many of those families are not wealthy, and some people are themselves disabled. If their loved one—their child—is put in an institution a long way from home, it can sometimes be impossible to maintain contact. Just imagine—all of us—what that must mean to people to lose touch with their vulnerable child. It is not acceptable, but it persists today, and according to that latest data from the end of May, the length of stay is still over five years. There has been very little change in the length of stay. Perhaps most troubling of all from that latest data is that the number of children in in-patient beds has more than doubled. For goodness’ sake, this programme is about moving away from institutional care, yet between March 2015 and May 2018, we have doubled the number of children in institutions. This is intolerable and in a little while, I will come back to why that is not necessary if things are done properly.

I find myself in a horrible position of expressing anxiety about closing the rest of those beds by March next year, but it is important for the Minister to note that there is a real fear on the part of families and the organisations that represent them about a big risk in a head-long dash to close beds by the deadline in cases where many people have complex needs. Some people in units that have been earmarked either for closure or reductions in beds, apparently defined as “impacted sites” in the system, will not be going home but will have to be shunted somewhere else in the country. Of course, a move for someone who has very complex needs can be massively destabilising. If this is done in a hurry to meet a target because there has been a failure of the programme to date to prepare community resources, it will be a disaster for the individuals involved. For those able to live in the community who are still in institutional care, there is a massive concern that not enough has been done to develop community services or train the workforce. We have to avoid the risk of discharging people only to readmit them weeks or months later.

I mention the really shocking case of a young lad called Eden. He has been failed throughout his life, from childhood into adulthood. He has been in hospital for more than 10 years. His mother, Deb, is desperate. She constantly fights against the system, which does not listen to her. He is in a hospital in Norfolk, and they live in London. She has long journeys—a 10-hour round trip or something of that sort—to visit him. She is not wealthy. Eventually—I visited Eden in that hospital—she got him home to a facility near their home in west London, but because arrangements had not been made properly by the local authority to have the proper support services in place, within weeks he was back in that institution again. That individual has been horribly failed by the NHS—by the system—and it is wholly unacceptable.

The consequences of the failure to get people out of institutions include, as I said, the loss of contact with family. Care behind closed doors often involves unacceptable practices, hidden from view. I mentioned Fauzia earlier, who was admitted to St Andrew’s hospital in Northampton—she was a child of 15 at the time. Her family asked me to go and visit her. It is an unusual thing for a Minister to do, but I decided to go at the invitation not of the institution, but of the family. I went to see her and she was living in what I would describe as “a cell”. This is a 15-year-old girl. She suffered from the constant use of force—restraint—and she was being put into seclusion in another room that was completely bare, with concrete walls. She had a tiny exercise yard. This girl was in there for over two years. It was really shocking—a total abuse of her human rights. She had no life at all, yet from the day that she was discharged, when we finally got a review undertaken, there has been no more restraint. She went to a brilliant place called Alderwood, also in Northamptonshire. The people who work there have never had to use restraint against her, because they have been trained, crucially—the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) will know about this—in how autism affects the individual, which so often does not happen in big institutions.

I visited Fauzia at Alderwood. She has a very happy life. She is outdoors much of the time, happy and contented—still very complex, but not in the horribly alien environment that she was in in St Andrew’s. St Andrew’s is receiving a fortune in Government money—taxpayers’ money—in many cases to treat people using the wrong model of care, trapping them in this institution. It has invested in a very substantial new unit. It may be smart—I am told that it is—but why are we making this investment in new in-patient facilities when children should not be going into hospital, unless there is an absolutely exceptional circumstance?

I also visited Josh, who I mentioned earlier. He had been in a hospital in Birmingham that had cared for him well, but he was far away from home. He has now made a substantial improvement and is developing brilliantly. He has a life again, and he is happy with his family. It is inspiring to see what people are doing to support individuals in those community settings.

What have the Government done to assess the progress of this programme? The Department of Health commissioned an independent review of transforming care partnerships, allocated £1 million to it and put it out to tender, but I am told that it has now been pulled and will not go ahead. Why? I understand that it might be because NHS England is also, bizarrely, commissioning an independent review, but we have only had provisional results from that. When will we know more? Those provisional results are disturbing. They show that, in quarter 3 of 2017-18, only 35 of the 48 transforming care partnerships had intensive support services to look after adults 24/7 in their own homes across the whole area of the partnership. Those services are required by the Government’s document, and they are critical to ensuring that people can be safe at home, yet only 35 out of 48 partnerships have them in place.

Only 23—less than half—of the partnerships had intensive support services for children and young people, so it is little wonder that we have seen a doubling of the number of children going into institutions. Only 19 had adult community forensics services across the whole area, and only 14 had children and young people’s community forensics services across the area. There is no detail at all yet about what the services that are in place actually consist of. All we have is a tick-box exercise to show whether there is a service in place. As the hon. Member for Ipswich (Sandy Martin) rightly identified, there is so much missing from community support that would enable people to be safely discharged and return home.

The National Audit Office report, to which the right hon. Member for Chesham and Amersham referred, made a pretty damning assessment in 2017. It questioned the credibility of the transforming care partnership plans and highlighted the fact that care and treatment reviews were not taking place as promised. Those reviews are supposed to be carried out for every individual in in-patient care every six months, yet, as of May this year, only 54% had had one in the past six months, and 390 patients—16% of the total—had not had one for more than a year. Why not? If the programme is being properly implemented, with proper national leadership, surely those reviews should happen in every case, every six months.

The NAO made the case that money was not transferring quickly enough from hospitals to the community and that there was still no effective mechanism to guarantee that that would happen. It identified an absence of workforce plans for community provision and found that most transforming care partnerships did not intend to produce such plans until 2019. Well, how the hell are they going to meet the target of this dramatic reduction in beds by March 2019 if they do not produce workforce plans until that time? That is completely the wrong way round.

[Dame Cheryl Gillan]

I happen to agree with the right hon. Gentleman. Does he expect the Minister to be able to tell us what has happened to the extra £2 billion of investment that the Government have made in social care services since March last year? It seems to me that something is not quite right about the co-ordination in this area, because the money is going in but the outcomes are not coming out at the other end.

[Norman Lamb]

I agree, and I suspect that the social care system as a whole is under considerable strain. The Government have chosen to produce a Green Paper only on the older people element of social care. They are not looking at the position of younger adults with disability. The right hon. Lady is absolutely right to say that we are not seeing the outcomes that we absolutely need to see.

Importantly, the NAO focused on the proportion of people with learning disabilities who are in paid employment. We need to take a holistic view. This is not just about whether someone is in a hospital bed or in the community. We need to empower people, as far as possible, to live the kind of lives that the rest of us take for granted. The report highlights the fact that only 5.8% of people with a learning disability are in paid employment. However, some local authorities have up to 20% employment rates in that area, which shows what is possible. [Interruption.] Madam Deputy Speaker, I am moving towards the end of my speech. I heard a cough, and I note the point that you are trying to make.

Before I finish, however, I want to highlight the fact that there are good things going on. I want to ask the Minister a number of questions. Some areas of the country do this really well. They include Salford, Hertfordshire, Ealing and Bristol, and there is a brilliant community service in my own county of Norfolk, which is run by an immensely inspiring woman called Melanie Bruce. She previously worked in institutions, but now takes the view that very few children ever need to go into hospital and that, if they do need to do so, it should be for only a very short time. The community service is called Starfish, and I have written to Simon Stevens saying that that model should be applied everywhere. In the past year, among the group of people in the Starfish programme, there has not been a single admission to hospital. That shows what is possible, rather than the doubling of the numbers that we are seeing elsewhere. I also want to mention Shared Lives Plus, a scheme in which someone with a learning disability or with mental ill health goes to live in a family. The families are paid for the support that they give, but the scheme treats the person as a human being and an equal citizen, rather than putting them in an institution. That is what is so important.

I will end by asking the Minister some questions. What will happen after March 2019? Will she commit to an improved successor programme that learns lessons from the last seven years and actually fulfils the promise of the transforming care programme, with a focus on implementation and inspiring effective national leadership? Will she confirm that those other programmes in NHS England, which are vital for people with learning disability, will continue and that the same national focus will be maintained or indeed enhanced? What assurances can she give that this programme of work will continue as an absolute priority beyond March next year?

Given the slow progress to date on closing beds and the stated plan to close 922 beds by March, what evidence does the Minister have that new community support is available to support the safe discharge of those people? Can she guarantee that there will be a close focus on every single case, to avoid the risk of neglect? Will the Government establish a new workforce development fund to ensure that there are enough staff with the skills to deliver the right care in the community?

What actions will the Minister take to guarantee the pooling of money and the shift of resource from hospitals to the community? Will she address the conflict of interest of clinicians making decisions when they are employed by organisations that earn their money from keeping beds occupied? How will the Government ensure that all in-patients receive a care and treatment review every six months, instead of the failure of delivery that we have at the moment? What steps are the Government taking to improve data on in-patient numbers so that we can bring to an end the two unreconciled data sets that we still have, years on from when the NAO complained about this in the first place?

How will the Minister ensure that progress is robustly and independently monitored and scrutinised? When will the independent evaluation be published in full? How do the Government intend to learn from the areas of really good practice to deliver an approach based on early intervention and crisis prevention? Will she ensure that, from here on, children will be central to the Government’s programme? If we can prevent children from going into institutions in the first place, we can change their lives completely. We can rescue them from a life in an institution.

Finally, will the Minister discuss with the Prime Minister the case for a cross-departmental ministerial taskforce to drive progress and show that all parts of Government are doing their bit to meet people’s full range of needs, given the importance not only of where they are but of employment, housing, education and the criminal justice system? This is a story of the awful neglect of people’s human rights, and of people in this country here and now being treated as second-class citizens. This really does have to end, and we owe it to the families sitting in the Public Gallery today and their loved ones to do far better by them in the future.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

Once again, I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this debate, but I regret that more of our colleagues are not in the Chamber for what I consider to be a very important debate.

I hope that the right hon. Gentleman and the House will forgive me if I come at this purely from the angle of autism, but, having the privilege of chairing the all-party group on autism, I tend to refer to it on every occasion, as many of my colleagues know. I have just come from a lunchtime event in the other place with the Baroness Browning, Angela Browning, who entered the House in the same year as I did and who was the original inspiration behind the Autism Act 2009, a private Member’s Bill that I took through the House. She was entertaining a group of people from an organisation called Fixers. I appreciate that we are not allowed prompts in the Chamber, but its report, “Feel Happy on the Spectrum: Young Autistic People Speak Out”, has already left an impression on me. Two very impressive young people, Jenny and Gabriel, talked us through their experiences.

As the right hon. Gentleman talked about employment, I had a look at the recommendations in the report, and of course they include something we would all like to see: more education on autism in the workplace. It contains testimony that I thought would be interesting to read into the record from a young person who has obviously found an employer who is understanding and welcoming of their autism. They wrote:

“Civil Service fast-stream is really good for people with autism. They go out of their way to accommodate your autism in their entrance exams with things like extra time and they don’t discriminate if you disclose”.

That is a positive note on which to start my remarks in a debate that is partly a reflection of the very sad and disturbing stories that came out of Winterbourne View care home. The transforming care programme was developed in response to that atrocious scandal. No one could have failed to be moved by the shocking abuse of adults with learning disabilities and autism in that private hospital, which was supposed to be an assessment and treatment unit—it most certainly was not a treatment unit; it was a maltreatment unit. Following that, the Government committed to moving about 3,000 adults with learning disabilities and autism out of in-patient settings and into community-based support by next April.

Although we have seen a small reduction in the number of people in in-patient settings, about 2,500 people are still in hospital, as the right hon. Gentleman said. Some 10% of those patients are under 18—that number has more than doubled since 2015; 61% have been in hospital for over two years and some, sadly, for over 10 years; and 46% have not had a care treatment review in the past six months, as mandated. As he also told us, and as I also understand from an excellent organisation called Dimensions, which provides personalised social care services to people with learning disabilities and autism, more than 22% of people are placed more than 100 km from home. So although there has been a reduction in the number of people living in hospital and some real success in moving people into community support, too many people are still being admitted or readmitted to hospital, and there remain obstacles to moving some of the original cohort considered under the programme into real homes.

The success of the programme relies on the right support being available in the community to prevent people from being admitted in the first place or to help them move out of hospital. The number of autistic people recorded in in-patient units has increased by over a third in the three years since data collection began in March 2015. That is a phenomenal increase. According to the latest figures, almost 48% of people covered by the transforming care programme are in fact autistic. While some of this increase may be put down to better identification of autism, it still displays a concerning over-reliance on hospitals rather than homes. Put simply, if transforming care does not work for autistic people, I am afraid that it will not work. If the programme is to continue, all mental health staff will require better training on and understanding of autism and the right community support will have to be made available.

It is crucial that we hear from the Minister what plans there are beyond March 2019 to ensure that any progress made is not lost and that there is a focus on areas where better progress needs to be made, specifically in supporting autistic people.

[Jim Shannon (Strangford) (DUP)]

I am sorry I was not here earlier, but I was in a one-hour Westminster Hall debate. I commend the right hon. Lady for the hard work she does on autism across the United Kingdom. As she will know, Northern Ireland has an autism strategy that leads the United Kingdom. It is similar to the programme in Wales, but we are leading the way. Will she kindly suggest to the Minister that the Government look at the plan in Northern Ireland, along with the one in Wales, as a good way of proceeding?

[Dame Cheryl Gillan]

Yes, it is very important that we look at what arrangements the devolved countries make for people with autism. Certainly a few years ago, Wales was well in advance with its plans for autism, which I found most commendable, but I think it now needs to revisit and update its plans, because none of these plans must be left to one side; they need to be constantly reviewed and updated.

I am pleased that next year we will have the opportunity to conduct a 10-year review of the Autism Act. I hope the right hon. Gentleman will contribute to the work that many Members are doing on both sides of the House in various areas, from education to employment, healthcare and even the over-representation of people with autism in the criminal justice system, so that we can put down a marker for the Government after 10 years on what progress has been made and how much further we have to go. If the hon. Member for Strangford (Jim Shannon) would be good enough to send me a link to the plans in Northern Ireland, or point me in the right direction, I am sure they will be taken into consideration as we carry out the review.

I am pleased to see the Minister in her place, as she obviously has a lead role, but I think that all relevant Departments need to play their part. I still have a feeling that we need a cross-departmental ministerial taskforce to cover the areas that I have just been highlighting, such as health, education, housing, and justice, all of which we will include in the APPG’s summary and presentation to the Government next year. Let me put down a marker for the Government. I want to know what plans the Minister has for the future of transforming care, whether she will establish that cross-departmental taskforce to lead the process, and what steps she will take to reduce the number of admissions of autistic people and improve the community services that should support them.

I work closely with many autism charities, and in particular with the National Autistic Society. Alongside Mencap and the Challenging Behaviour Foundation, it has been leading research on the experience of families who have been affected by the transforming care programme. It wanted to look into exactly how relatives came to be in mental health hospitals, and what was getting in the way of their being discharged back into the community. I commend to the Minister the report “Transforming Care: our stories”. It contains the very powerful stories of 13 families, and I think that she will find it very useful, if she or her officials have not yet been able to read it.

The report found that, despite the existence of a national programme, five areas needed real focus to make the programme successful. The first is

“Making sure the right services are available in the community”.

I think we have covered that. The second is involving and listening to individual families, and helping them to be heard through advocacy if necessary. The third is improving the quality of in-patient care. The fourth is

“Making plans for discharge and sticking to them”.

The fifth is providing specialist support from trained and understanding staff. For me, that last one is key. When we have met someone with autism, we have met just one person with autism. Everyone is different. Staff really need to understand that, and to be trained to understand people with autism.

[Sandy Martin]

Does the right hon. Lady agree that one of the most important aspects of support for the families of children and young people with autism is the availability of respite care, to enable them to cope with the very great additional duties that they have?

[Dame Cheryl Gillan]

Absolutely. I know from my constituency casework—as, I think, will every MP—that providing a safe home and a safe environment for a family member who has autism can be a very intense, demanding and challenging process, and respite care plays an important part in giving family members a breathing space.

The report includes some remarks from someone called Anna, the mother of Catherine, who is autistic and has a learning disability and obsessive-compulsive disorder.

“Anna told us, ‘she’s not getting any treatment, it’s just a holding pen because staff [in the unit] don’t have the right skills, expertise or mindset…Everything is about seclusion, never about trying to prevent incidents happening in the first place.”

That demonstrates to me that there is a lack of training, and that much more emphasis should be put on that.

The report goes on to outline recommendations made from people and organisations at every level, from individual professionals to NHS England and the Government. In particular, it suggests that a cultural shift is needed to ensure that individuals and their families are listened to in a way that can reduce the number of adversarial relationships that sometimes arise. The importance of a good understanding of both autism and learning disabilities, as a comorbidity, should be emphasised more than it is at present.

One of the parents of an autistic man with mental health problems said:

““Stephen just falls between the gaps and no one takes ultimate responsibility for his case… Where is the pressure to get Stephen back into the community?”

That is a cry for help from a father who wants to see his son go out into the community and have the quality of life that everyone deserves to be able to achieve.

The report also highlights a lack of accountability throughout the system, particularly when it comes to meeting the needs of autistic people. At a national level, in NHS England, leadership for autism falls into the gap between established learning disability and mental health teams. The appointment of a new strategy lead for autism in NHS England is considered to be a very positive step, but I need to be reassured that, in the future, NHS England will focus on the needs of autistic people in order to meet the Government’s requirement for a reduction in their health inequality, which is a commitment in the NHS mandate. I hope that the Minister will tell us what steps she will take to ensure that NHS England allocates appropriate resources to the needs of autistic people, and to ensure that the issues set out in “Transforming Care: our stories”—I am going to give her a copy—are addressed.

Autism charities regularly hear that autistic people struggle to find mental health support that meets their needs, and in the worst cases, if this is not available, people hit crisis and are admitted to hospital. Traditional mental health interventions might need changing, for example by using clear, non-metaphorical language or communicating with someone who does not speak. That, again, requires a good understanding of autism.

In 2016 NHS England published its mental health “Five Year Forward View” outlining how it plans to improve mental health services in England. It includes a number of proposals for new care pathways to help people access the right support and, importantly, it proposes a care pathway for autism. Work on designing this pathway is due to start this year, but I have not seen any detail on what it will include. It is vital that it covers the following for children, young people and adults on the autism spectrum: timely access to autism diagnosis, autism training for all mental health staff, and the ability to make reasonable adjustments for mental health treatments so that if autistic people need mental health support, they can get the right help from services. I hope that the Minister will also address how the autism care pathway will be developed and that it will cover diagnosis, access to tailored mental health support and autism training.

Another contributory factor to the number of autistic people in mental health hospitals is the inclusion of autism in the Mental Health Act 1983 definition of mental disorder, meaning that autistic people can be sectioned without a diagnosed mental health problem. The independent review of the Mental Health Act is very important and has been welcomed by the autism charities. They believe it is important to create a legal regime around mental health support that properly meets the needs of autistic people and their families. The status quo fails to do this, and that has resulted in autistic people being inappropriately detained under the Act and far too often subjected to damaging over-medication. The NHS digital data show that autistic people are not benefiting entirely from the NHS England transforming care programme, because the in-patient numbers are failing to meaningfully reduce and in some cases are rising. The review’s interim report has identified this definition of autism as a mental disorder as a key question to be addressed in the final report, and I strongly urge that the review must address the inequality for autistic people at the heart of the Mental Health Act. I hope the Minister addresses that in her closing remarks.

I have spoken for some time, and I hope I have added to the debate initiated by the right hon. Member for North Norfolk, although I appreciate that I have, inevitably, repeated some of the points he made. In conclusion, I go back to something I said earlier about the transforming care programme that I think summarises the situation. Put simply, if transforming care does not work for autistic people, it will not work. We want transforming care to work; we want it to succeed. It has made a start: it is not an all-good start, but it is not an all-bad start. The Minister and the Government have a golden opportunity to turn what is a visionary programme into something that can reflect the success of the care with which we look after people in our community with learning disabilities and autism. I look forward to hearing the Minister’s response.

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[Paula Sherriff]

My hon. Friend makes a very valid point. Everybody here this afternoon could not fail to be shocked and horrified by the case outlined by my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) regarding her young constituent, Matthew, and the quality of care that he received on an in-patient unit.

Some 1,311 cases were passed for review between July 2016 and November 2017, but only 103—that is 8%—have finished so far. The report cited a lack of local capacity to review cases, inadequate training for people completing mortality reviews and insufficient staff capacity to complete a mortality review. Will the Minister update the House on when the remaining cases will be finalised and what the Department is doing to ensure that these barriers are tackled? In 13% of cases reviewed, the person’s health had been adversely affected by delays in care or treatment, gaps in service provision, organisational dysfunction, neglect or abuse.

Just how many more deaths must occur before the Government tackle the unjust treatment of people with learning disabilities? Dr Ryan, Connor Sparrowhawk’s mother, was also damning in her assessment. She said that too many agencies had shown “systematic disregard” for some people with learning disabilities and she felt that certain people “simply don’t count” in the eyes of the authorities. We must do better, and we must show that every single life matters. But our fear is that, without some fundamental changes in the Government’s approach, the problem is set to get worse, not better.

Take the NHS workforce, for example. The latest figures from Health Education England show that the number of learning disability nurses working in the NHS has gone down by a third over five years. HEE data from March 2017 shows that learning disability nursing had the highest proportion of vacancies, at 16.3%, compared with all other fields of nursing. Will the Minister tell us how the Government plan to tackle this?

It is bad enough that the failures of transforming care have left too many people inappropriately in hospital settings, but the lack of trained staff when they are there makes that failure all the more stark.

[Dame Cheryl Gillan]

I am with the hon. Lady in her criticisms, and in wanting some constructive developments and improvements, but I would not want her to stay at the Dispatch Box and paint a picture that is completely negative. There are some inspirational stories about people coming out of these settings and institutions after being dealt with by a caring team, who have put a particular emphasis on communications and turned lives around. Some of the case studies published by Dimensions show that that really is one of the ways forward, and that is what we should seek. It is possible to take an aggressive individual out of an in-patient setting and give them the quality of life and meaning to life that we would all want and expect.

[Paula Sherriff]

I thank the right hon. Lady for her intervention. I absolutely agree. There are some incredible examples around the country of excellent work that is being done, but that makes it all the more important that we share that good practice so that it is disseminated more widely. Particularly on this very special day of the NHS’s 70th anniversary, I pay tribute to all those people who are involved in being innovative, and not just doing exactly what they have to and no more.

It is bad enough that the failure of transforming care has left too many people inappropriately in hospital settings, but the lack of trained staff when they are there makes that failure all the more stark. It is also a matter of great concern that the Government are not including people with learning disabilities, or working-age people with disabilities, in the social care Green Paper, but are instead having a “parallel workstream”. Once again, the care needs of people with learning disabilities seem to have been put in second place.

If this catalogue of failure were not enough, the issue around sleep-ins threatens to make it even worse. It has been woefully mishandled thus far. Having admitted that earlier guidance on pay was misleading both for providers and commissioners, Ministers are now playing for time rather than finding a solution, ignoring warnings from care providers, charities, and the Local Government Association. The consequences for people with learning disabilities and autism could be disastrous. Some 70% of learning disability providers have warned that they will no longer be viable. It could drastically reduce the number of providers available to provide community services. For people with learning disabilities, autism or challenging behaviour who are personal budget-holders in receipt of funding from local authorities to pay care staff themselves, this crisis could lead to difficulty in paying their personal back-pay bill and, in turn, having to reduce their level of support to cover costs.

Let me be clear, as a former healthcare worker and trade unionist, that the care workers affected should receive historic back pay for national minimum wage sleep-in shifts rather than paying the price for underfunding of social care. Given the state of the sector, without imminent investment we run the risk of a systemic failure that could leave thousands of people without the care that they desperately need. That is why we continue to call for the Government to reveal the full scale of financial liability and to increase funding for social care so that care providers can continue to deliver services to vulnerable people in need of care and workers can receive the pay to which they are entitled.

A Labour Government would provide care workers with paid travel time, access to training, and an option to choose regular hours. That, of course, comes in the context of proper investment, increasing social care budgets by £8 billion over the next Parliament, including an additional £1 billion for the first year to ease the Tory social care crisis. We have made our alternative crystal clear. Our policy will include all people with care needs, with the aim of ensuring that they can live independently and, most crucially, with dignity.

The question that the Minister must now answer is whether and how this Government can work towards that goal. Will there be a successor programme to transforming care? How will the shift to early intervention, prevention and community care be prioritised and properly resourced, given that what we have now is clearly not sufficient? In the end, this is a question of how we value human lives.

--- Later in debate ---

[Caroline Dinenage]

Absolutely, it should be 0%. As the right hon. Gentleman knows, that is what we are working towards.

[Dame Cheryl Gillan]

I appreciate that this is quite a complex area, but I have looked at some of the transition times. Dimensions—I mentioned it earlier—has estimated that its average transition time per patient is 12.5 months, which I believe is below the usual transition time. Does the Minister feel that this length of time will inhibit her from reaching her targets in 2019? Is there anything we can do to reduce the time, or does that length of time need to be taken?

[Caroline Dinenage]

My right hon. Friend makes an excellent point. NHS England says it is confident of hitting these targets and it will be doing all it can to ensure that that happens, but that must not be at the cost of treating people with the right levels of care or of having the right provision in place. This is also about keeping people out of the hospital setting in the first place.

The number of people receiving community or pre-admission care, education and treatment reviews also continues to improve, with 42% more undertaken in 2017-18 than in the previous year, of which 79% led to a decision not to admit somebody to in-patient care.

[Dame Cheryl Gillan]

I do not know whether the Minister will accept this, but I would have thought that everybody involved in this debate actually preferred us not to aim for a target that might not be reachable, because it is the quality of the outcomes and successful transitions that we are looking for. Will she be flexible enough to say, on looking at this again, that if we cannot achieve the targets by 2019, she will allow the timeframe to drop out of the picture? It is more important to have a successful transition, with the right length of time for somebody to transition, than to hit what might be an unattainable target.

--- Later in debate ---

[Caroline Dinenage]

We can certainly look at what the hon. Lady suggests. I am pleased that the operational delivery group, which I just mentioned, allows stakeholders to shape policy and it is really good news that Isabelle Garnett, Matthew’s mum, is a major contributor to this and liaises with NHS England directly on its programme around children either in hospital or at risk of being admitted.

The right hon. Member for North Norfolk asked why the evaluation was cancelled. As he knows, an evaluation sponsored by NHS England is already under way, and the Department, having invited bids for its evaluation, was not satisfied that the proposals received were what was needed. That does not mean that we are not absolutely determined to critically review progress, particularly working with stakeholders and users.

The right hon. Gentleman spoke about the “No voice unheard, no right ignored” Green Paper. Although I am always ready to bow to his incredible knowledge in this field, it is not entirely true to say that the Green Paper went unheeded. Some of the recommendations were overtaken by changes in Government policy, and indeed, in Governments, but we have taken forward work such as the named social worker pilot and a review of the Mental Health Act. We have asked Professor Sir Simon Wessely, the chair of the independent review, to listen to people with direct experience of the Mental Health Act and this, of course, includes autistic people and their carers. He published his interim report to update the Government on his progress, which sets out specific issues that we must explore to look at how we can improve the scope of the Act.

The hon. Member for Dulwich and West Norwood also spoke about training for teachers in autism. The Department for Education has funded training and support for teachers through the Autism Education Trust. That is in early years, schools and further education, and so far, 175,000 staff have been trained.

[Dame Cheryl Gillan]

Does my hon. Friend also welcome the fact that from September this year in initial teacher training, the possibility of having a module on autism will now be included? It is something that we worked very hard for and the Department for Education responded. This is about not just the historical training, which is so important, but the future training that is coming on-stream from September this year.

[Caroline Dinenage]

My right hon. Friend is absolutely right to raise that, and I am sure that its introduction is in no small part down to her incredible work.

Society has failed people with learning disabilities for too many years. Our aim is to put things right. People are at the heart of the transforming care delivery programme. The priority is to provide safe, high-quality care that is appropriate for everyone. We will continue to work with our partners to ensure that people with learning disabilities have the opportunity to live as full and independent lives as possible.

Oral Answers to Questions

Cheryl Gillan Excerpts

Tuesday 19th June 2018 Commons Chamber

[Mr Speaker]

Ah yes, in the frame, we now have a dame—I call Dame Cheryl Gillan.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

14. What recent assessment he has made of the potential merits of including autism in NICE guidance on epilepsy.

[The Minister for Care (Caroline Dinenage)]

NICE is currently in the early stages of updating the clinical guidelines on the diagnosis and management of epilepsies in adults, and plan to go out to consultation on a draft scope in October this year.

[Dame Cheryl Gillan]

The UK’s autism research charity Autistica advises that up to 40% of people with epilepsies are, in fact, autistic, and that epileptic seizures are the leading cause of early death for autistic people with a learning disability. NICE guidance has never mentioned autism when referring to epilepsy, and autistic people have distinctive types of epilepsies that require different clinical approaches. Will the Minister please ensure that NICE includes autism in the guidelines on epilepsy?

[Caroline Dinenage]

At this stage, it is too early in the update process for NICE to say exactly what its guidance will cover. However, my right hon. Friend is chair of the all-party group on autism and vice-chair of the all-party group on epilepsy, and she was the driving force behind the Autism Act 2009. I think that NICE would do very well to heed her advice.

Learning Disabilities Mortality Review

Cheryl Gillan Excerpts

Tuesday 8th May 2018 Commons Chamber

[Caroline Dinenage]

I thank the hon. Lady for raising this issue; the report makes for very troubling reading.

On the date of publication, the hon. Lady will be aware that this was an independent report prepared by the University of Bristol and commissioned by NHS England, which wanted to look into this really important issue, and because it was an independent report, it did not actually alert us to publication, so we had no more notice than she did. We are investigating through NHS England and others why that happened.[Official Report, 9 May 2018, Vol. 640, c. 8MC.]

As the report clearly identifies, there is still more work to do, and we will work with partners to see how the recommendations may be implemented. We are committed to learning from every avoidable death to ensure that such terrible tragedies are avoided in the future. She mentions Dr Sara Ryan, whose son, Connor Sparrowhawk, died in such tragic circumstances in my own Southern Health Trust area. She and other parents like her are testimony to the incredible dedication of people who have worked so hard to get justice for their loved ones at a time when they feel least able to do so.

We have done several things already. We have introduced a new legal requirement so that from June every NHS trust will have to publish data on avoidable deaths, including for people with a learning disability, and provide evidence of learning and improvements. We are the first healthcare system in the world to publish estimates of how many people have died as a result of problems in their care. Learning from the review is also informing the development of the pathways of care published by NHS England and the RightCare programme, which is tailored to the needs of people with learning disabilities. Pathways on epilepsy, sepsis and respiratory conditions will be published later this year.

We have introduced the learning disability annual health checks scheme to help ensure that undiagnosed health conditions can be identified early. The uptake of preventive care has been promoted and improved, while the establishing of trust between doctors and patients is providing better continuity of care. We have also supported workforce development by commissioning the development of learning disabilities core skills education and training framework, which sets out the essential skills and knowledge for all staff involved in learning disability care.

As I said, the report makes for troubling reading, but we asked NHS England to commission it so that we might learn from these deaths and make sure that trusts up and down the country are better equipped to prevent them from happening in the future.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

Every preventable death brings personal tragedy, as was highlighted in a 2016 report by Autistica, the autism charity, entitled “Personal tragedies, public crisis”. Autistic adults with a learning disability are 40 times more likely to die prematurely. That is why I welcomed the Government’s announcement in March that reducing the gap in life expectancy for autistic people was one of the top autism priorities in the “Think Autism” strategy governance refresh under provisions in the Autism Act 2009. How will the Minister implement those provisions?

[Caroline Dinenage]

I pay tribute to my right hon. Friend, whose incredible work over many years campaigning on behalf of autistic people up and down the country has made a magnificent difference. She is right to raise this issue. It is of course unacceptable that people with autism have poorer health outcomes, and we are determined to address this. I meet regularly with representative groups and we take on board all their comments about how they would like to see the situation improved.

Social Care Provision and the NHS

Cheryl Gillan Excerpts

Thursday 3rd May 2018 Westminster Hall

[Dame Cheryl Gillan (in the Chair)]

Unfortunately, the hon. Member for High Peak (Ruth George) was delayed, but I have taken advice and now that she has arrived, I think it is in the interests of the House and all hon. Members present if we proceed with the debate.

[Ruth George (High Peak) (Lab)]

I beg to move,

That this House has considered the effect of social care provision on the NHS.

Thank you, Dame Cheryl. I was moved to initiate this debate by the experience that I had just after Easter, when I spent a 12-hour shift with colleagues in the ambulance service based at the depot in Buxton; they are trained and very experienced paramedics. I have had a lot of cases involving constituents who have been concerned about ambulance waiting times—the time that it takes ambulances to get to patients in our very rural area—so I spent a day with staff to see what the pressures were.

I expected those pressures to be on the NHS, but what I found from spending a day with the ambulance service and the excellent and hard-working crews, who said that it was not in any sense untypical, was that we spent the day going around seeing elderly patients in their own homes. They might have had family carers or received occasional visits from professional, paid carers, but they were left on their own for a lot of the time. They often had ongoing health conditions that flared up from time to time and caused them and their carers great concern, and that would escalate to calling out an ambulance. I therefore spent a lot of the day sitting in the back of an ambulance and talking to elderly patients. That was quite a pleasant way to spend a day—I like talking to older people and have helped with care for my own family—but it is not really what we want our paramedics to be doing.

I receive calls from constituents about their family members who have to wait in dire circumstances at times. In one recent case, an elderly lady had had a stroke. The GP was begging for an ambulance to come to her, but it took five hours for it to get there. Unfortunately, that lady subsequently died. We cannot say that that was because of the delays in the ambulance arriving, but a lot of time is taken up by ambulances travelling around to elderly and isolated people, and that is happening more and more.

Age UK says that there has been an increase to about 1.2 million in the number of people who need care but whose care needs are not being met. It is a vicious circle, which ends up impacting on our NHS. The winter crisis seems to be going on and on. There are almost 4 million people on hospital waiting lists. Every week at my constituency surgeries and coffee mornings, I see constituents who are waiting for treatments such as hip replacements. I saw a lady in Buxton who had been waiting almost a year for a hip replacement. She used to be an avid walker of the countryside, but now is practically housebound. That has obviously impacted on her quality of life.

There are also waits to see a GP. We have gone from waits of 48 hours, as a maximum, eight years ago to waits of two weeks now. People have to book an appointment some way ahead; and often, if people phone any time after about 8.20 in the morning, the surgery will say that it has no appointments left, even for two weeks’ time. People have to say that it is an urgent case in order to be seen and then they are seen more quickly. The situation is impacting on GPs as well.

In accident and emergency departments, only 85% of people are seen within four hours. At my local hospital, Stepping Hill, patients are queuing on trolleys in the corridors and are given a bell to ring if they feel that their condition is deteriorating, because there are just not enough staff even to keep an eye on them. The staff rely on patients themselves being able to give an alert if they feel that they are in urgent need of care.

I saw the impact of the long ambulance waits in A&E. They are backed up, sometimes seven at a time, outside our hospitals while they wait to be able to discharge patients. The staff now face an overtime ban, despite the great demands on their service. Even two weeks into the financial year, they were already banned from overtime, so young trainee paramedics are staffing ambulances on their own at night, which is not what I want to see in my constituency and not how we should be treating the staff.

BBC 2’s “Hospital” programme showed what is happening in A&E at the moment. We saw a frantically overstretched service and every hospital bed full, but staff estimated that 80% of the patients should not actually have needed a bed; they should have been in social care. This comes back to the cuts in social care.

According to the Association of Directors of Adult Social Services, £6.3 billion has been cut from social care budgets. Nationally, 400,000 fewer people are receiving social care, more than a quarter less than in 2010, despite increasing demand. In Derbyshire, my county, the number of people needing care has risen by more than one quarter, from 32,000 to 40,000 people.

Social care cuts do not make good television, though. They are invisible to the outside world. Patients are not lined up, queuing on trolleys. No one could really make a drama about it, but it is a crisis in the homes of the 1.2 million people who need and are waiting for care and cannot get it. We see that crisis only when we step inside the NHS, with paramedics or GPs who have to visit those elderly patients or in A&E departments. Then we see the people who are falling through the gaps in social care. That is echoed in my own constituency, where one of the GP surgeries tells me that 19 patients in one small town are on a waiting list for a care package. They are either in hospital, taking up a hospital bed, or at home with family carers, who are struggling to cope.

Palliative care is particularly difficult. At the end of life, patients typically need four or five short visits a day. Particularly in a rural area, that is very hard for our care services to cope with in the way they are financed and paid for. The lack of palliative care means that patients are stuck in hospitals where they are often many miles away from their loved ones. In a tragic recent case, one of our GP surgeries told me about an elderly gentleman crying to the GP because he had never been separated from his wife before. They were both in their 80s. She was terminally ill in hospital and he could not get to see her. That GP surgery pulled out all the stops. It got its district nurses to go in and allow that lady to go home for the final few days of her life. However, they cannot do that for every patient. The NHS simply does not have the resources and it impacts on other patients it needs to see.

The surgery in Hope in my constituency in the rural Peak district tells me that patients are being cared for in the community by relatives much more than used to be the case. That is good for the individuals in many ways. That is where they want to be. However, it puts more strain on GPs having to visit more frequently those patients with more complex needs. A poll by MediConnect in 2010 found that almost nine in 10 GPs believe that the reductions in social care are leading to extra pressures on their surgeries, which is leading to extra pressures on GPs. Buxton is seeking to fill six GP vacancies out of a total of 12 across the town. That is not sustainable.

That also leads to extra pressure on A&E departments and increased delays in discharges from hospital. In 2016-17, there was a 12-month average of 188,000 days of delayed care, which is 73,000 more than the four years from 2010 to 2014, when the situation was fairly stable. The King’s Fund has estimated that patients waiting for a care package in their own home accounted for the largest number of delays—in other words, more than 20% of all delays in discharge.

The cuts to social care are creating more expense for our NHS, but it would be cheaper to resolve such cuts. The NHS spent approximately £168 million on delayed transfers of care for patients awaiting a home care package in 2015-16. That could have funded more than 5 million hours of home care in that year—431,000 hours a month or nearly 15,000 hours a day—helping thousands of patients to stay in their own home with the care they need.

The Multiple Sclerosis Society has done a lot of work on the issue, because sufferers of MS frequently need care but a lot of that need is not being met. It says that in 2015-16, emergency hospital admissions for people with MS in England cost the NHS a total of £46 million. A large proportion of that emergency care was for problems that could have been avoided with proactive, preventive care, and earlier diagnosis and intervention in the community. For example, 14% of emergency admissions were for urinary tract infections, costing more than £2,500 per patient, which could have been avoided.

The reductions in social care are not simply down to Government cuts, hard as they have been for local authorities to sustain. There have also been huge increases in demand of more than 25% in the past eight years. The cuts to local authorities—they are gradually cutting the amount paid to care homes and to carers who provide care to people in their homes—are having a detrimental impact on the whole sector. It is really coming to a crisis point. A 2017 survey of directors of adult social services found that 39% had home care providers ceasing to trade in the previous six months and that 37% had contracts handed back.

My constituency of High Peak has real difficulty recruiting staff to work in care services. The staff do an absolutely fantastic job, but the pay is very low. Over half of staff nationally are on zero-hours contracts. Particularly in expensive rural areas, such as the Peak district, one cannot afford to live on the wages of a care worker. Ironically, however, there are more and more elderly and infirm people in those areas. In High Peak, our volunteer services run a professional, not-for-profit care service arm, but it is operating at a loss and has to cross-subsidise its care services from other services, which it cannot afford to do much longer.

This is a particular problem in rural areas. Patients are scattered, meaning more travel time and extra costs for companies. Our private care companies, the agencies, cherry-pick the areas they will cover, so they avoid the very rural areas, which cost them far more in mileage and travel time. A Rural England report found that rural councils pay 13% more on average than predominantly urban councils, but they still report more problems in commissioning services. Several home care businesses commented that they did not feel that councils paid enough and that was reflected in the handing back of contracts. Everyone says that council providers are needed, which would not cherry-pick based on areas that are profitable.

Even though Derbyshire is one of the few areas where our Labour-run council kept on directly employed care staff on the proper living wage, it cannot recruit enough staff, so we have to rely on agency staff. There are about 90,000 vacancies across the country for agency social care staff. They are at an absolute premium and our local jobcentres are always trying to recruit people into care jobs, but it is not for everyone. It is a difficult, often gruelling job, both physically and emotionally. It pays very little. Care workers often have to be able to run their own car and find their own way around. They have to like older people—the patients. That is a hard thing to do, particularly if they are caring for a parent or have other caring responsibilities. It is a lot for anyone to take on. It is no wonder that the turnover of care workers is running at nearly four in 10 every year.

Funding cuts are now having a detrimental impact on care quality as well. One in five adult social care services received the poorest overall ratings from the Care Quality Commission and almost one quarter of services had the poorest ratings for safety. Some 22% required improvement and 2% were deemed inadequate. The Government, however, do not seem to be seeking to tackle those problems of quality. Skills for Care, the skills organisation for care services, has a budget of only £21 million, or £14 per care worker, whereas Health Education England has a budget of £4.6 billion. The National Audit Office criticised the Government for failing to have an up-to-date workforce strategy for the care sector—the last work- force strategy was produced in 2009, under a Labour Government.

Last November, the Competition and Markets Authority did a study of care homes, which stated that, in general, care homes are struggling. Local authority-funded homes, which are now very much in the minority, cover their operating costs but not their total costs. That suggests that while those care homes may be able to operate in the short term, they may not be able to undertake future investment to update their existing capacity, prevent closure or increase their capacity for local authority-funded residents. The Salvation Army runs excellent not-for-profit care homes, including one in my constituency. When I visited the home over the Easter recess, the increasing gap between the rate paid by the local authority and the amount it costs to run a care home was highlighted to me.

All those cuts impact on the NHS and then the NHS cuts, as part of a vicious spiral, impact back on social care. As I have said, our own north Derbyshire clinical commissioning group is £24 million in the red, a huge sum for a relatively small CCG. It has been taken into special measures by NHS England and cuts are being imposed. Our specialist dementia care assessment unit has closed. The support that went to the families and patients who went into that ward on an ongoing basis is no longer there. The staff who were at threat of redundancy had a huge number of skills in adult mental care, mental health service care and specialist dementia care. The respite beds on that ward have also closed. One patient with early-onset dementia was managing at home, with one week in six of respite for his wife, but he now needs full-time nursing care, as his wife cannot cope at home without that week of respite.

Rehabilitation beds are no longer a halfway-house option, because they are being closed as well. Even worse, patients are being sent home from acute care without a care package in place. Many end up with infections or have a downturn in their condition and end up back in hospital unable to cope. It becomes a spiral that impacts on family carers at home.

Carers are struggling. They do an incredible job. The Carers Trust estimates that there are 5.5 million unpaid carers in England and 2,300 in High Peak alone. People do not often meet carers who are caring for someone with a long-term condition, because they are isolated. When I visit the GP surgery or the hospital with my family, I can sit down and talk to some of the carers about the isolation that they experience and how difficult it is because they cannot stop, because they love the person they are caring for and feel that they have no other option.

Some 61% of carers report having a long-term health condition. They are more likely to report problems with depression, pain and mobility, but they do not attend their own health appointments. The Carers Trust found that 57% had cancelled or postponed a health appointment because their caring role took precedent over their own health. It is no wonder that 81% of older carers surveyed said they felt lonely and isolated.

The Government are looking to do more work on carers, and have commissioned studies such as the 2014 Department of Health impact assessment, which estimated that spending an extra £300 million on carers in England would save councils £430 million in replacement care costs and would result in “monetised health benefits” of £2.3 billion. Each £1 spent on supporting carers would save councils nearly £1.50 in replacement care costs and benefit the wider health system by nearly £8. However, the money to put into those services and to make that sort of investment is not there, because the NHS, social care and local authorities are firefighting. Of course, the greatest impact is on the patients who do not receive the care they need and are left isolated, confused and sometimes in pain.

The MS Society says that one in three people living with multiple sclerosis do not get the support they need with essential everyday activities such as washing, dressing and eating. That has an adverse impact on their physical and mental health, resulting in a greater reliance and increased pressure on the NHS, which already faces significant financial and demographic strain. I hope hon. Members can see that it adds up to a vicious circle of lack of investment and funding and constant cuts. People who provide services are trying to do their best with what they have, but constant cuts in one area are offset by the other; cuts in social care lead to an increased reliance on the NHS, while cuts in NHS services lead to huge extra costs for long-term care in nursing homes or by carers.

I am pleased that the Government have combined health and social care into a single responsible Department, but until councils and the NHS are not simply trying to drive down costs to meet their savings targets by offsetting against each other, and until we have combined budgets at a local level, the vicious circle will not end, and the problems for patients and their carers, and the strain on the health service as a whole, will not end either. I hope the Government will listen and take action.

--- Later in debate ---

[Caroline Dinenage]

I have already recognised the fact that all local authorities have had to make some really tough decisions. We know it has been difficult for everybody. Taking that action to control the deficit and get the country’s finances under control has meant that we have turned a corner and we are now beginning to put that funding back in. I do not think we can deny that there were years that were very difficult for all local authorities. There is dedicated funding in adult social care; the funding goes to a specific cause, which is really important, and allows local authorities to support and sustain a more diverse care market. It also goes on to help relieve pressure on the NHS, including by supporting more people to be discharged from hospital as soon as they are ready.

The money is already beginning to have an impact. Delays of transfers out of hospital due to adult social care hold-ups have reduced by more than a third over the past 12 months, freeing up 820 beds. A key tool in developing more and better out-of-hospital services is the better care fund, which is a mandatory, national programme for integrating health and social care. It joins up services so that they are designed around people’s needs, enabling them to manage their own wellbeing and to live as independently as possible. By mandating the pool of funds, the better care fund has helped to join up health and care services and incentivise local areas to work better together with increasing amounts of funds being used in that process. Some 90% of local leaders have reported that the better care fund has helped them to progress integration in their areas.

We know that the burden of care cannot and should not continue to fall simply on hospitals. We need to move care into the home and into the community. There are great examples of how that is working in practice up and down the country. Public Health England, the Chief Fire Officers Association, the Local Government Association, NHS England and Age UK already have a joint working approach to establish how local fire and rescue services, for example, can be commissioned to check on people in their homes, to check on the safety of people’s homes, and to check on things such as trip hazards—all things that can lead to people being admitted to hospital or needing the support of social care services. They work together to encourage joint working around intelligence-led early intervention and, in doing so, reduce preventable hospital admissions.

Evidence has indicated that longer hospital stays for older patients can lead to worse health outcomes and an increase in their care needs on discharge. We know that for a healthy older adult, 10 days of bed rest leads to a 14% reduction in leg and hip muscle strength and a 12% reduction in aerobic capacity, which is the equivalent of 10 years of their life, which is a massive incentive to make sure we get people back into their own homes and active as quickly as possible, in the interests of their own wellbeing.

I am particularly interested in understanding how intermediate care—step-up and step-down services—can reduce the impact of health crises on individuals. A relatively minor infection or a temporary worsening of a chronic condition should never spiral into a prolonged hospital stay with a detrimental impact on long-term quality of life. The real goal of integrating health and social care is not simply a benefit to the system, but an emphasis on person-centred care. We need multi-disciplinary teams working around a person to maximise the effectiveness of interventions, and therefore minimise disruption to the individual.

The hospital to home programme brings together practitioners across health and social care to develop solutions for more patient-centred care, focusing on how to keep people at home. It shows how urgent and emergency care services, community services, primary care and social care can all work together to make sure that people get the right care at the right time and, crucially, in the right place. That partnership goes through everything that local partners do, whether providing interlocking services or commissioning the right pattern of services.

How can we push forward these aims and create a sustainable settlement for social care? In March, the Secretary of State for Health and Social Care outlined seven principles for the Green Paper on care and support and for adult social care reform, and he put a key focus on the need to integrate services around the individual for a seamless, whole-person approach to both health and care. We have committed to publishing the Green Paper by the summer, and when it is published there will of course be a full public consultation, through which we want to seek the broadest possible range of views. I look forward to the contributions of Members under that national discussion.

[Dame Cheryl Gillan (in the Chair)]

The hon. Member for High Peak has a couple of minutes to wind up if she so wishes.

[Ruth George]

I will not take up that much of hon. Members’ time, but I will thank Members who have contributed to the discussion. I am pleased to have had the opportunity to have this discussion today—thank you, Dame Cheryl, for allowing me to do so. I hope it opens the door to looking more broadly at the impact of health and social care services on one another, and on patients and their carers.

[Dame Cheryl Gillan (in the Chair)]

I am most grateful to the Clerk for his advice in Westminster Hall today. I am very glad that we were able to have the debate.

Question put and agreed to.

Resolved,

That this House has considered the effect of social care provision on the NHS.

Autism

Cheryl Gillan Excerpts

Thursday 29th March 2018 Commons Chamber

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

I beg to move,

That this House notes that World Autism Awareness Week 2018 runs from 26 March to 2 April; believes that there is a lack of understanding of the needs of autistic people and their families; and calls on the Government to improve the support provided to autistic children in school and to autistic adults in or seeking employment, to reduce waiting times for autism diagnosis, and to promote a public awareness campaign so people can make the changes necessary for the UK to become autism-friendly.

I welcome to the Front Bench the Minister for Care, who will be responding to the debate. I gather that she chaired an autism accountability meeting on Monday, so she brings knowledge of that to the debate, and I look forward to hearing what she has to say. I thank the Backbench Business Committee for granting this debate during World Autism Awareness Week itself.

I want to put on record my great pride at chairing the all-party group on autism, which is a really good cross-party group that embraces people from both sides of the Chamber. It is important that we continue this debate on a cross-party basis because, as we must remind ourselves, in each Member’s constituency we probably have approximately 1,000 autistic people. The accepted statistic is about one in 100 people. This is therefore a subject that we share between us, and one on which we can make good progress when we all work together.

I am also aware that many Members have family members who are on the autism spectrum. I wish to put on record my thanks to colleagues who have shared their own experiences, because those experiences add to the body of knowledge and to the effective way in which we can improve situations for people with autism and their families.

The fact that this is such an important issue is reflected particularly in the National Autistic Society’s Too Much Information campaign, with which many of us will be familiar. Only 16% of autistic people and their family members think that the public really understand autism in any meaningful way. As a result, an alarming number of people—79% of autistic people and 70% of families—feel socially isolated. At a time when our Prime Minister has put in place a Minister for loneliness, we must not forget the isolation that can be caused for autistic people through behaviour or a lack of understanding in this area. Half of autistic people and their families sometimes do not even go out because they are worried about how people will react to autism, while 28% of autistic people have been asked to leave a public space because of behaviour associated with their autism.

[Mark Tami (Alyn and Deeside) (Lab)]

Does the right hon. Lady agree that the situation is also very frustrating for those who fail to get a diagnosis of autism, particularly when their local authority is not able to provide one, or says that it does not have the resources to do so? Even if a person pays privately for one, the local authority will not accept that as a diagnosis.

--- Later in debate ---

[Dame Cheryl Gillan]

The hon. Gentleman makes a valid point, and I will come on to diagnosis a bit later in my speech.

May I put it on record that while many people associate autism with mental health, it is in fact a developmental condition—a lifelong developmental condition—and not necessarily a mental health condition? Autistic people are as likely to suffer from a mental health problem as anybody else—any neurotypical person. I really want to make sure that nobody in this House ever confuses that, and I hope that that puts the record straight.

I wish to touch on the Autism Act 2009. Almost 10 years ago, I was very privileged to draw No. 1 in the ballot for private Members’ Bills and then to take through the Bill that became that Act. We are coming up to the 10th anniversary of the Act, which is really important. A key element of the Act was to mandate the Government to produce an adult autism strategy, and the 10-year anniversary will coincide with a year in which that strategy is up for review. The all-party group is working towards holding to account every Government Department involved, and making sure that their feet are held to the fire, because this affects almost every area of public life and public policy. Ahead of the review, I want all areas of our Government to consider how they can better support people with autism and people on the autism spectrum.

It is also important to look at the good that that Act has done. Almost 10 years on, the National Autistic Society had a look at this, and it is worth reflecting on the fact that autism really is on the agenda now for an awful lot of people, and locally as well. Almost everyone is aware of autism. NAS polling showed that 99.5% of people were aware of autism, and almost every council—93% of them—has an autism lead.

[Mr Jim Cunningham (Coventry South) (Lab)]

The right hon. Lady does the House a great service by bringing forward this debate on autism. Can she tell me—perhaps she does not have the figures—about employers’ attitude to employing people with autism? Are there any statistics on that?

[Dame Cheryl Gillan]

The hon. Gentleman anticipates another bit of my speech. That is really important, because people with autism are disproportionately not being taken off the unemployment register. In fact only yesterday, with the all-party group for disability, I had a joint meeting with the Minister for Apprenticeships and Skills to look at the problems and consider how, working with employers’ organisations and the Government, we can try to improve the situation.

More councils now include autism in their joint strategic needs assessment, and almost every local area has a diagnostic pathway—those that do not will know who they are, but all but three are covered. That is really significant progress, but let us face it there is not a person in the House who does not know that we need to make more progress in this area, so I do not say that with any sense of complacency whatsoever.

I want to touch on a few areas, but I have only limited time. I have been very impressed by the number of Members on both sides of the House who have put in to speak, and it is really important that I hear from them.

I will start by talking briefly about education. My hon. Friends the Members for Bexhill and Battle (Huw Merriman) and for Lewes (Maria Caulfield) recently chaired an inquiry into autism and education under the umbrella of the APPG. They did some fantastic work, looking at how the education system in England currently works for children. The inquiry involved evidence sessions and surveys, and took additional evidence from more than 3,000 parents, professionals and people on the autism spectrum. It found that children are being held back from achieving their full potential because they are autistic. In our surveys, nearly 70% of parents told us that they had waited for more than six months for support at school, and 50% had waited for more than a year.

[Robert Halfon (Harlow) (Con)]

I congratulate my right hon. Friend on leading this debate. As a distinguished former Cabinet Minister, she could be drinking piña coladas in her garden in Amersham, yet she dedicates her life to helping with autism. Is she aware that autistic children are four times more likely to be permanently excluded than other children?

[Dame Cheryl Gillan]

My right hon. Friend, who chairs the Education Committee with distinction, is absolutely right. That is why I am so pleased that this year, for the first time, the Government are putting a compulsory autism module into initial teacher training. That is significant, and I hope that my right hon. Friend’s Committee might look into that provision.

The inquiry of my hon. Friends the Members for Bexhill and Battle and for Lewes also found that four in 10 families were initially turned away when asking for the extra help that their child needs. To address these challenges, we have recommended that the Department for Education develops an autism strategy. That call has been enthusiastically taken up by the National Autistic Society and Ambitious about Autism, which launched the Held Back campaign to support the report’s recommendations.

More than 20,000 people, including 70 Members of this House and the House of Lords, have signed an open letter to the Secretary of State for Education calling for the report’s recommendations to be implemented. It is really important that Lord Agnew, the Under-Secretary of State for the school system, comes forward with the Department’s response, as it has confirmed that it will respond to the inquiry. It will be good to hear what it is doing to make improvements in this area.

I turn to the autism employment gap, which is a major problem.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

I thank the right hon. Lady for the work that she does on the APPG, which is much needed and welcomed. I agreed with what she said about children in school, and I think that everybody here knows of such cases. My constituent, Lucy, has a bright seven-year-old son who is in year 4 but is working at year 1 level because he has not had his diagnosis. That an absolute disgrace for the child, who is missing out on his education, but Lucy also wrote to me to say, “I am exhausted”. She is fighting with all her energy, but says,

“I still have fight in me, but the whole family is exhausted”

because they feel that there is a barrier at every step.

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[Dame Cheryl Gillan]

That is a common theme for parents who face this continuous battle. That is why we need to provide assistance. Every Member must know which routes they can take to provide as much assistance as possible.

[Mr George Howarth (Knowsley) (Lab)]

Will the right hon. Lady give way?

[Dame Cheryl Gillan]

This will probably be the last intervention, I am afraid.

[Mr Howarth]

I am grateful. I hesitate to intervene on the right hon. Lady because she is making a powerful point, but before she moves on to employment, will she agree that any new system has to take account of the frustration that parents feel as they attempt to get appropriate support for their children? In some cases, that frustration is overpowering.

[Dame Cheryl Gillan]

I agree entirely. The right hon. Gentleman shows that there is great understanding of the issue on both sides of the House.

Some 60% of employers worry about getting support for an autistic employee wrong, and 60% of do not know who to ask for advice or support about employing an autistic person. Given the huge success of the Government’s Access to Work programme, it is a real shame that there is not better awareness of it among employers. I want to hear about that from Front Benchers. The NAS recommends that we ensure that Jobcentre Plus staff, work coaches and disability employment advisers all receive training in how to deal with autistic people.

[Alex Burghart (Brentwood and Ongar) (Con)]

Will my right hon. Friend give way?

[Dame Cheryl Gillan]

This really is the last time.

[Alex Burghart]

I apologise to the House that I am losing my voice. My right hon. Friend is being extremely generous with her time. She quite rightly points out that Access to Work is a valuable initiative that helps people, but in my experience it helps people once they already have a job. Does she agree that it would be wonderful if that sort of initiative and expertise were brought forward to help people with autism to prepare for work so that they were less intimidated by applying for jobs?

[Dame Cheryl Gillan]

I am also afraid that I am slightly losing my voice; I am sounding a bit Fenella Fielding. It is important that the Government promote the positives of employing autistic people and ensure that advice about supporting autistic people at work is made available to employers.

In the recent Command Paper “Improving Lives: The Future of Work, Health and Disability”, the Government acknowledged that autistic people were one of the groups that struggled most with employment. I would welcome the Minister addressing this point when she winds up, as well as giving us an update on the potential progress towards putting autism into the labour force survey, which would be an important step.

I want to touch on three other points: criminal justice; diagnosis waiting times; and access to democracy. The subject of people with autism in the criminal justice system does not often get the profile that it deserves. Because of the nature of autism, autistic people can find themselves being caught up in the criminal justice system inadvertently. We need to work hard to ensure that we are doing all that we can to support people not to enter the system in the first place, and we also need to get it right by ensuring that we do the best we can by those people when they do enter the system.

I have always been very impressed by Feltham young offenders institution, which has achieved accreditation from the NAS as an autism-friendly institution. I understood that 20 other prisons were going through accreditation. Will the Minister update us on what is happening with the autism accreditation system? Furthermore, we would like to see training for professionals across the criminal justice system. Will she take that point on board and give us an update on what progress the Government are making? The APPG will be launching a call for evidence on criminal justice over the next few weeks and I urge every Member of this House to get in touch with the secretary of the group if they have case studies and examples of autism and the criminal justice system to share.

As the hon. Member for Alyn and Deeside (Mark Tami) mentioned in his intervention, waiting times for diagnosis are critical. Diagnosis is a critical milestone for people on the spectrum, but individuals are having to wait far too long for an autism diagnosis. Research by Goldsmiths and City, University of London, shows that the average wait for children for an autism diagnosis is over three and a half years, while adults receive a diagnosis after around two years. The Government have committed to record and publish waiting times. Recording will start in April and publication will begin next year. That is incredibly important, and I hope that the Minister will update us on that.

Finally, I want to talk about autism and access to democracy. I sit on the Public Administration and Constitutional Affairs Committee, and our inquiry into the work of the Electoral Commission has just touched on this subject. Research suggests that voter turnout among those with a disability is much lower than that of the general population, and the Government, rightly, have a duty to close that gap and ensure that everyone is able to cast their vote. There are special access requirements around buildings, and the Government also commission guides on voting for people with different disabilities, such as those with a learning disability. However, I would welcome clarity from the Government on whether the adjustments that autistic people may need are considered in the Electoral Commission guidance, and on whether the Government are planning any autism-friendly guides for voters on the spectrum.

Autism affects so many areas of government that it is difficult to address them all in one speech. I am being held to about 15 minutes, but I could stand here for the next half hour and opine on where we need to go, what is happening, and where we need to have the drivers.

I want finally to return to World Autism Awareness Week and the reason why we are all here today. Autistic people tell the National Autistic Society that the thing that would make the biggest difference to their day-to-day lives would be if people understood autism. I have a personal aim that all those who play a role in public services, no matter where in this country, should be trained to appreciate the challenges faced by autistic people in the workplace, in schools, on public transport, and in other public places. If we all show just a little more awareness of how autism can affect others, we can make great strides in making autistic people feel at home and more welcome in all our communities.

[Several hon. Members rose—]

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[Mr Sheerman]

My hon. Friend is right. We need to spread the knowledge. We need to get the Government, right across the piece—there almost ought to be a Minister for autism—making sure that seamlessly, across all Departments, there is a high level of awareness.

On early diagnosis, the commission heard evidence on what happens in Sweden. Sweden seems to be one of the places that one looks to: I believe that the professor we interviewed was the man who actually minted the expression, “the autism spectrum”. The evidence we were given was that every child in Sweden is evaluated to see whether they are on the spectrum very early on—at seven years of age, I think—so why not every child in the United Kingdom? That is what we should be looking for—early diagnosis and early support of the family.

A lot of people on the autism spectrum fall foul of the criminal justice system. A person on the autism spectrum can get on a bus in a normal way in the morning, then if the bus is cancelled or something else happens that disturbs their routine, that has a very big impact on them. They may behave rather antisocially. The police may be called and they end up in a cell. I have heard this story so many times. The criminal justice system has to look very carefully at the needs of people on the autism spectrum.

[Dame Cheryl Gillan]

I wonder whether the hon. Gentleman has seen the National Autistic Society’s latest film, “Too Much Information”, which is about exactly that problem of somebody being overwhelmed when they are travelling on public transport.

[Mr Sheerman]

The right hon. Lady knows that I accept that wholeheartedly.

I want to finish by saying that it is wonderful that we are having a short debate on autism, but we have to keep coming back to this. It is a very important part of all our lives as Members of Parliament. We must know more, do more and help more, and if that is part of what we manage to achieve this week, I will be very proud of this House.

[Mrs Anne-Marie Trevelyan (Berwick-upon-Tweed) (Con)]

Every time we have a debate on autism, we bring the issue forward, as the hon. Member for Huddersfield (Mr Sheerman) pointed out.

As someone who has family experience of this—my wonderful 18-year-old son, who has been through the mill, has Asperger’s—constituents are starting to contact me and come and talk to me. They are stepping out into the light and saying, “How do I cope?” Having these debates is genuinely giving confidence to families, particularly mothers, to ask for help and ask how they might find support. As ever, I add my continued gratitude to my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) for all the work she is doing.

[Dame Cheryl Gillan]

My hon. Friend gives me a good opportunity to say to all those people who email me and contact me on social media that I cannot deal with all the questions and issues that come into my inbox, but I encourage those people to contact their MPs directly, because it is their own MPs who can help them—

[Mr Deputy Speaker (Sir Lindsay Hoyle)]

Order. This is a very important debate. I put a seven-minute limit on speeches to try to give everybody a chance to speak. Given the interventions, I will have to drop the limit for Members lower down the list. I do not think it is fair. Interventions have to be short, and Members should think about whether they need to intervene—especially when they are summing up at the end.

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[John Howell (Henley) (Con)]

It is a great pleasure to follow the hon. Member for Bristol West (Thangam Debbonaire) and all my other colleagues who have spoken on this matter. I congratulate my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan). I am very pleased to support World Autism Awareness Week.

I have a constituency interest and a personal interest in this issue. The constituency has a large number of centres that provide support to those with autism. We also have a spectacular charity, Music for Autism. I was interested to hear the comments on the link between music and those with autism, which has been enormously helpful. I hope to come on to my personal interest in due course.

Young people and adults with autism are some of the most loyal and hardworking people I have ever come across. All they need is a chance, and that chance comes through early diagnosis. The more I have looked at this issue, the more I have become attached to the idea of one-stop shops for parents or guardians. Provision varies depending on where one is in the UK. I refer Members to the Department for Education report that covers that, by our former colleague Lee Scott.

On school exclusions, what has shocked me the most is that young people with autism face more exclusions than any other group. That is a frightening thing to take on board. It is perhaps not surprising when we have heard that some schools are excluding people when they know that Ofsted is coming—a disgraceful use of the system.

My personal interest is as an ambassador for a scheme that goes by the names of the Glyn Hopkin Foundation, the Sycamore Trust, and Space—Supporting People with Autism into Continued Employment. The charity does a lot of the work that hon. Members have been talking about the Government providing. It not only provides people who are fully ready for work; it provides advice to employers on how they should go about changing their own operations to make them autism friendly. What I have taken away from its work is a reminder that minor, easy adjustments to recruitment and the workplace can make a huge difference. I am currently trying to take a young person with autism into my office here in the House of Commons to work alongside me, initially for a few weeks on my first attempt. It is a great privilege to be involved in this area.

I will finish a little earlier for similar reasons to those given by the hon. Member for Bristol West, but I will say that the Department for Education has done great work over many years. This is not a question of funding, but attitude. It is a question of getting the attitude right in the Department to face this opportunity to make the most out of those with autism, so that they can better contribute to our society.

Teaching has been mentioned. I am very appreciative of all that has been said about the provision of training for teachers, but actually I would not blame the teachers at all on this issue. I blame a number of local education authorities. It is currently very hit and miss as to whether a local education authority is autism friendly, and can cope and provide all the support services. There are many good examples, but I will not name them now.

[Dame Cheryl Gillan]

Does my hon. Friend agree that not only is it important that schools do not exclude a pupil with autism when the Ofsted inspectors are coming into the school, but that those Ofsted inspectors should be fully trained to understand autism? They could then inspect a real class in a real situation and see how the school handled it.

[John Howell]

My right hon. Friend makes a very good point. I expect Ofsted inspectors to be trained to ask the question, “Who has been excluded who has an autistic condition?” That should be fundamental to what an Ofsted inspector asks before beginning an examination. My criticism of local education authorities includes the fact that many do not pass on all the funding given to them by central Government. There is a great need for ring-fencing such funds so that LEAs can carry out what we are asking them to do.

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[Dr Cameron]

That is an apt intervention, and I agree entirely. It is not just the postcode lottery, but the widespread variation right across the United Kingdom. Through the all-party group, we hear that people from different parts of the UK feel that they have to battle the system repeatedly at every stage. This is very important. In Health questions, I have asked the Secretary of State whether the Department might consider putting individuals who can diagnose autism into every child and adolescent mental health services team. I know that the Department is looking at data and waiting times. That is so important to getting some degree of stability in the services provided and to ensure that everyone has adequate access moving forward. Knowing where we are to start with can only be a good thing when we look at the progress being made.

As has been mentioned, autism spectrum disorder affects people across their lifespan, so it has to be at the core of policy across many Departments, including those responsible for education and community. This is also about our surgeries. I have taken on the excellent points made by the hon. Member for Bristol West (Thangam Debbonaire) and I will start my own such surgery in the near future. We have discussed it since our last debate on this subject and it is an excellent idea. I recommend that, as MPs, we all move forward in the same manner, walking the walk, not just talking the talk.

The management of our local shopping centres have been positive about having autism-friendly opening hours so that families can come at particular times. The setting will be made appropriate and people will feel included and relaxed when they go about their daily life. There is so much more to be done. On employment, the autism employment gap is so much higher than the disability employment gap. We must take that forward.

[Dame Cheryl Gillan]

Has the hon. Lady heard about the autism exchange programme, which Ambitious about Autism developed in partnership with the civil service? It has found that employers are pleasantly surprised at the benefits they get from employing people with autism.

[Dr Cameron]

That sounds like an absolutely wonderful initiative, and I hope that it is rolled out to many more organisations. We should all be working with local business communities to champion the potential of people with autism in the workplace. They have great skills to offer and should certainly be given the opportunity to be part of our workforce.

Before I finish, I want to touch on mental health and criminal justice. The last such debate that I took part in in the Chamber was about people who have not only autism, but mental health issues. That is extremely important; it is another reason why they should not be excluded from services—they need quick access as a priority. The Royal College of Psychiatrists estimates that those on the autistic spectrum are seven and a half times more likely to commit suicide. That is an absolutely startling statistic. If we put up barriers before people get to services and support, that figure can only rise. I ask the Minister to address access to services and the understanding of comorbidity within primary care.

On criminal justice, I recently met the Minister of State, Ministry of Justice, to discuss this issue, because I feel that those on the autistic spectrum are often lost in the criminal justice system and are very vulnerable within it. They are subject to bullying and have difficulty adapting and coping in that situation. We must do all that we can, so I was pleased to meet him and discuss some issues and practices from Scotland, and to share best practice right across the United Kingdom on special witness measures, support for those going through a court process and pre-arrest. In my constituency, we have a wonderful police training college at Jackton. I spoke to Police Scotland, which assures me that all its officers have undertaken mental health training and autism awareness training. That is excellent and just what is needed. We must continue to build on that.

I am pleased to speak in this debate, but the more I speak about autism, the more I realise how much more work we have to do. I am pleased to be moving forward on a cross-party basis. I will always be a champion for autism in my constituency and I like to work with like-minded Members across the House, of whom there are many and of whom I am very proud.

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[Patricia Gibson (North Ayrshire and Arran) (SNP)]

Like all the speakers who have gone before me, I am delighted to speak in this important debate on autism, particularly as it takes place during World Autism Awareness Week. In common with colleagues across the House, I also want to put on the record my thanks to the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), who has blazed a trail in this area.

Today’s debate is important because for far too many people living with autism there is not just the actual condition to cope with, but, as we have heard, the isolation and often bullying and judgmental attitudes from a society or community that too often does not comprehend the condition. That is why we all need to work hard to raise awareness of it. In the longer term, the challenges that the condition brings can leave those living with it emotionally scarred, which in turn can lead to difficulties accessing employment and living a fulfilling life.

We know that 700,000 people in the UK are autistic, but many others we do not know about will be awaiting a diagnosis. Even if we take the 700,000 figure, however, and then factor in the relatives, it means that living with autism is a fact of life every single day for 2.8 million people. It is right and proper, therefore, particularly during World Autism Awareness Week, that we debate this important matter and recognise the challenges of the condition and how much more we must do as a society to meet them. Attitudes towards and awareness of autism are changing, but we still have some way to go.

We also need to understand, as the right hon. Lady pointed out, that autism is not a mental health condition. That said, as many as 71% of children with autism also live with a mental health challenge, such as anxiety, depression or obsessive compulsive disorder. Such mental health challenges are not inevitable, however, but the result, it seems, of the social isolation that autism too often brings. The Association of Graduate Careers Advisory Services found that 26% of graduates on the autism spectrum were unemployed—by far the highest rate of any disability group and more than double the average unemployment rate for disabled adults—and, although figures are hard to establish, it is thought that only 15% of autistic adults in the UK are in full-time work.

A large scale study in the British Journal of Psychiatry in November 2015 found that people with autism were more than twice as likely as their peers in the wider population to die prematurely, and recent work by the National Autistic Society found that only 16% of those living with autism and their families felt that the general public had a meaningful understanding of autism. Moreover, young people with autism are 28 times more likely than their peers who do not live with autism to have suicidal thoughts. That is the scale of the challenge; we have a significant way to go, despite having made some progress.

[Dame Cheryl Gillan]

I do not know if, in common with me, the hon. Lady received a briefing from the Royal College of Psychiatrists for this debate, but I was surprised to find that one in 10 psychiatry consultant posts were unfilled. We have a shortage of psychiatrists, which inhibits progress in this area, particularly in diagnosis and treatment.

[Patricia Gibson]

As the right hon. Lady’s intervention shows, meeting the challenge will not be easy. We still have huge mountains to climb to make life better for people living with this condition.

All these challenges show why we must continue to highlight the condition. It is important not just that people living with this condition can access the support they need but that they feel supported and that they live in a society that does not overlook, shun or ignore them, as has happened too often in the past. The challenges facing those living with autism are not inevitable. With work and education, and by raising awareness and understanding of autism in our communities, much can be done to counteract the negative outcomes they too often face. That is why I want to put on the record the sterling work done in my constituency by community campaigners Suzanne Fernando and her family, Jordan, Arron and Kester. The Fernando family live with autism every day and have worked tirelessly to raise awareness of the condition in their local community of Ardrossan and beyond, and have met with considerable success in doing so. Every year, they put in a huge amount of work to hold a coffee morning to disseminate information on the issue and offer support to those in the community living with the challenges of autism every day. As I have said, we know how isolating this condition can be.

--- Later in debate ---

[Angela Crawley (Lanark and Hamilton East) (SNP)]

It is a pleasure to speak in this debate on a condition that affects more than 700,000 people in the UK but that is often misunderstood.

I welcome World Autism Awareness Week and the opportunity to have this debate in the Chamber. I thank all the contributors, and I will acknowledge each in turn, but I particularly thank the hon. Member for Strangford (Jim Shannon), who rightly outlined that some of the welfare changes have had a detrimental impact on those with autism. The hon. Member for Bristol West (Thangam Debbonaire) highlighted that this Parliament could benefit from being autism friendly, which would be a benefit to all.

I thank my hon. Friends the Members for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), for Glasgow South West (Chris Stephens) and for North Ayrshire and Arran (Patricia Gibson) for their initiatives in their local communities and for their carer-friendly and autism-friendly surgeries. I hope to be able to follow in their footsteps.

[Dame Cheryl Gillan]

The hon. Lady will be pleased to know that Parliament has been accredited as an autism-friendly destination, of which we are very proud. We want to try to maintain that across the board, so we are constantly keeping the administrative authorities up to their mettle so we retain that accreditation.

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[The Minister for Care (Caroline Dinenage)]

I will start by heaping praise on my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) for securing this important debate and her incredible work over many years to raise the awareness of autism both within and outside this place. It is thanks to her ground-breaking private Member’s Bill on autism that we now have an adult autism strategy. Next year, it will be 10 years since her Bill became the Autism Act 2009, transforming services for autistic adults and having a huge impact on public awareness of autism. That is entirely down to her.

[Dame Cheryl Gillan]

Will the Minister give way?

[Caroline Dinenage]

I am not going to give way too much because I have a lot to get through, but I will definitely give way to my right hon. Friend.

[Dame Cheryl Gillan]

I thank the Minister and other Members who have acknowledged that I have had a part to play in this. She is sitting next to my hon. and learned Friend the Member for South Swindon (Robert Buckland); he and Members of all parties have contributed to this work. I assure the Minister that no one MP can do this on her own. My tribute is to all those people who have done the hard work and the heavy lifting.

[Caroline Dinenage]

My right hon. Friend is as honourable and modest as ever. I also want to thank all the other Members who have worked long and hard on this over a number of years, and those who have contributed so beautifully today. This high-quality debate has included strong personal stories and great examples of fantastic constituency work.

I thank the Backbench Business Committee for enabling this debate to happen during World Autism Awareness Week. It has given us the opportunity to draw much-needed attention to the challenges that autistic people, and their families and carers, face on a daily basis. Members who have spoken are absolutely right to say that we need to understand more about autism across all sectors of society and in all parts of government. I share their determination to address this important issue.

Since the introduction of the autism strategy in 2010, it has done much to improve the lives of those living with autism, but we know that there is still much to be done. As hon. Members may be aware, we have recently put in place revised governance arrangements to continue taking forward the strategy. On Monday I had the pleasure of chairing the first annual accountability meeting, where I heard from key stakeholders, self-advocates and partners about the challenges facing autistic adults across England and how we can keep making progress in realising the ambitious autism strategy.

Organ Donation (Deemed Consent) Bill

Cheryl Gillan Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

[Mr Robinson]

We would encourage that across the board. Although my hon. Friend draws attention to a vital area, it is only one of those that we hope to address. As I am sure he will understand, different issues seem equally important to those who are in other categories. I do not claim that my Bill on its own is a panacea for our problems, but I am convinced that it is a vital prerequisite to the imparting of a new impetus to the increase in organ donations that we know the country urgently needs.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

I congratulate the hon. Gentleman on the Bill, which I support. May I pursue the point made by the hon. Member for Rochdale (Tony Lloyd)? I believe that in 2016-17, after Wales had introduced presumed consent, 13 out of 33 families withdrew that consent when they were asked about it. Can the hon. Gentleman assure me that the Bill will allow room for relatives still to be consulted and to withdraw the consent? After all, it is being asked for at a very sensitive time. I want us to ensure that families are given that latitude, while trying to do everything possible to increase organ donation.

[Mr Robinson]

The right hon. Lady raises a difficult but important issue. As part of the soft opt-out, there will certainly be arrangements for families and close friends to express their opinions. It is interesting to note that in Spain, which has no register and operates what is effectively an opt-out system, there is always consultation with every family who can be reached in time in the absence of a register, and as a result of those consultations there is a tremendous rate of consent. It can, of course, work the other way as well, and the Bill will make full provision for that. It needs to be carefully worded, and I invite those with a particular interest to look at it, but the intention is to give families in that position an effective veto. I may not have fully picked up the point made by my hon. Friend the Member for Rochdale (Tony Lloyd).

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[Mr Robinson]

That is a very moderate intervention from the hon. Gentleman, for which I am grateful. He is probably looking at the recent remarks and quotes from the Nuffield Council on Bioethics, which relate back a year, if I am not mistaken, to 2016 or ’17, but we are now in 2018 and the situation has evolved. I recommend to him an article I have here in The BMJ; I will leave it out for him if he would like to read it. It gives a full account of the situation in Wales, and is very hopeful. But, as I have said, we are going to monitor this carefully, and we should be cautious, practical and realistic in our approach to the introduction of the system in the UK.

[Dame Cheryl Gillan]

May I give the hon. Gentleman some good news on Wales? The legislation in Wales was pioneering, and was much discussed when I was Secretary of State for Wales. I have been looking at the details of some of the statistics from Wales in the latest report on organ donation and transplantation activity data, and the hon. Gentleman will be pleased to note that back in 2013-14 some 1,005,213 people were opted into the organ donation register in Wales, while for the first three quarters of the years 2017-18 that number increased to 1,220,331. The fact that more people are opted into that register is very positive news from Wales.

[Mr Robinson]

It was because the figure was so low in 2013 that the Welsh Government decided to move to an opt-out system. I agree with the right hon. Lady, and disagree with those who, for some reason or another, will not look at the most recent facts and move with the situation that is developing. The situation in 2013 was bad, which the Welsh Government recognised and they then went for an opt-out system. Then there was a period of bedding-in and there appeared to be no change, but the most recent figures for 2018—as opposed to 2017 or ’16—are showing a marked improvement, and I am sure we can all rejoice at that. This is not a matter of trading economic figures across the Chamber; that is a sheer fact and one that I think we can all take great satisfaction from.

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[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

Thank you very much for calling me to speak so early in the debate, Mr Speaker. I add my congratulations to the hon. Member for Coventry North West (Mr Robinson) on the compassionate way in which he introduced his Bill, and on bringing it before the House. I hope that I am not assuming too much when I say that I think there is good support for it on both sides of the House. More importantly, I believe that the Under-Secretary of State for Health, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), who will be speaking from the Front Bench today, will also be giving it her support. For me, this is a bit like déjà vu, because I went through all these arguments back in 2010 when the Welsh Assembly was looking at introducing what finally became the Human Transplantation (Wales) Act 2013, which took effect in 2015.

The permitting of a system involving deemed consent is quite a complex concept. To be truthful, it received many objections from a large number of people in Wales at the time, on a large number of grounds. I was approached by the Kidney Wales Federation, which did a fantastic job, along with a lot of other organisations, in lobbying politicians and explaining the position of families who were waiting for organs and families who had been approached to donate the organs of a deceased relative. The debate got quite heated at times, and it also gave rise to a lot of myths. Looking at the evidence, I have always found that the medical profession and others surrounding bereaved relatives, or those who are about to become bereaved, have handled these matters with great sensitivity and achieved good outcomes. Indeed, the legislation in Wales still permits families to withdraw the so-called deemed consent, which means that their views can be taken into consideration. That is extremely important.

One thing I looked at was the success rate of the 2008 organ donation taskforce, which helped to increase donation rates greatly in the five years of its operation. There was a 50% increase in donors and a 30.5% increase in transplants, which are impressive statistics. At the time, I was exceedingly worried that, by introducing controversial legislation, we might do damage to a campaign that was yielding positive results—that needs to be taken into consideration.

The truth is that there are more people on the donation list than there are organs available. For many people in this Chamber, and beyond, it is worth noting that there was a particular problem in the black and minority ethnic population because, in those days, 23% of the people waiting for organ donation were from the BME population and only 1.2% of the people on the register were from the BME community. That huge discrepancy and disparity caused a lot of aggravation.

I was unsure about the legislation in Wales, but I am pleased to stand here as a politician and openly admit that I have changed my mind. There is no disgrace in that—when the facts change, I change my mind, which is important. One reason why I changed my mind is that I have a dear friend who, for the purpose of this debate, I will call Jane. I have known her son since he was born, and I will call him John.

John has primary sclerosing cholangitis, a chronic liver disease whereby the bile ducts, the passages that carry bile from the liver to the intestines, become blocked and narrowed by inflammation, so scar tissue builds up and the liver itself stops functioning. The symptoms can include tiredness, aching, itching, pain in the abdomen, jaundice, chills and fevers. The progression of the disease, although highly variable, usually leads to one conclusion—that the patient needs a liver transplant.

John has been told that, because of the shortage of transplants, he has to be in cirrhosis before he can be put on the list, and then he will have to wait for a match. By that time, he may not be well enough to have a transplant. I am close to the family and have seen the effect on them. Jane wrote to me:

“This has obviously affected the whole family. John still lives with us at 25, and we are, in fact, his carers in some respects, as we know he will only get worse in time. We do not know how much time he has, and he cannot plan for his future. As well as physically, mentally it takes a great toll on him, as he does not know if he will get a transplant when he needs one. Organ donation would help a great deal in this.”

When you have a friend with a boy—he is now a man, and he is a highly intelligent and wonderful human being—in that position, you have to reconsider where you stand on such legislation.

The Bill will not be enough in itself, but it will do absolutely no harm and it will again stimulate a debate. If the Bill continues to be accompanied by campaigns to encourage people to register and to donate, it will help to raise awareness, which will help to increase the statistics, as we did in the first five years following the organ donation taskforce.

We are all living longer, and if we in this House can prolong the life, and improve the quality of life, of people such as John who suffer from rare diseases, we should do so. I will give this Bill a fair wind. Obviously the devil will be in the detail, and we will need to consider the Bill carefully. I would like us to consult, and to learn from the experience in Wales, because there will be a lot to learn—Wales has forged the way.

I do not want a hard system, as in Austria—that is not what I envisage. I want this whole area still to be surrounded by the care and consideration of the medical profession, and I want the latitude that allows families and people with genuine reasons not to participate, but I want to see increased numbers of people on the register. I want to see increased organ donation and more lives saved. I give the Bill a fair wind.

Acute and Community Health

Cheryl Gillan Excerpts

Thursday 8th February 2018 Commons Chamber

[Stephen Barclay]

The hon. Gentleman raises a number of important points, but particularly regarding whistleblowers. That was one warning signal that clearly failed here. The regulations have been changed, as he will be aware. In the past, there was a culture in which compromise agreements were applied with gagging clauses attached. That prevented visibility of the compromise agreements. That is why I asked, on receipt of the report, why the compromise agreements that were paid were not escalated to the board, and indeed what sight, if any, regulators had of those compromise agreements. Clearly financial payments will have been made, so there should be an audit trail.

The hon. Gentleman asked what changes had been made. An area on which my right hon. Friend the Secretary of State has placed a huge amount of importance, and in which he has given a huge amount of leadership, is patient safety guardians and ensuring that there are people in trusts tasked specifically with giving voice to patients. One of the many sensible pieces of advice that my predecessor, my hon. Friend the Member for Ludlow (Mr Dunne), gave me was that when visiting a trust, I should have a one-on-one meeting with that individual, not only because of their status within the trust but to gather information from them. He did so assiduously on all his visits.

The wider point is how, from a regulatory structure point of view, we can ensure that there are safeguards when there are cost improvement programmes and ask what visibility there is of them. NHS Improvement has set out a series of measures to ensure that trusts learn the lessons of Francis. Obviously the period covered by the report goes back as far as 2010, but it is important that the NHS learns from the issues that Dr Kirkup sets out.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

May I add my tribute to the hon. Member for West Lancashire (Rosie Cooper)? She is a formidable parliamentarian and has done some very good work on this. The report is shocking. Back in March 2015, following other incidents, the Public Administration Committee produced a report investigating clinical incidents in the NHS, in which it recommended the setting up of the health service’s safety investigation branch. The Government have now published the draft Bill for that. When will it enter pre-legislative scrutiny, so that we can change the culture and have the open learning culture that we should have in our NHS, very much as is seen in the airline industry?

[Stephen Barclay]

My right hon. Friend raises an important point on the draft Bill and the consultation. I am not in a position to announce a date; that will be announced by business managers in the usual way.

My right hon. Friend is right to allude to that Bill as one of a suite of measures following Sir Bruce Keogh’s review and the Francis report, which are all part of changing the culture. I acknowledge the importance of those measures, but I want to signal to the House today that Dr Kirkup’s report identifies remaining issues that need to be tackled. He has done us that service, and that is where I am keen that we focus as a Government.