Preventing Avoidable Sight Loss

Cheryl Gillan Excerpts

Tuesday 28th March 2017 Westminster Hall

[Mr Cunningham]

The hon. Lady’s pronunciation is not as bad as mine. I would support a national strategy. More importantly, however, the cost of drugs for treatment is an area that creates difficulties. In 2014-15, the cost of two drugs alone to treat age-related macular degeneration was £287 million. There is room for discussion between the Government and the drug companies on the cost of drugs to treat people with eye problems.

[Mrs Cheryl Gillan (in the Chair)]

Order. I gently remind Members that interventions are supposed to be short. We seem to have plenty of time, but we have quite a few speakers, so I would like interventions to be short.

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[Jim Shannon (Strangford) (DUP)]

I have 27 minutes to speak. I jest, by the way; I am not going to speak for 27 minutes.

[Mrs Cheryl Gillan (in the Chair)]

Mr Shannon, you have plenty of time to speak. I feel I should declare an interest as I am wearing glasses to read my papers.

[Jim Shannon]

It is always a pleasure to serve under your chairmanship, Mrs Gillan. I give special thanks to the hon. Member for Wealden (Nusrat Ghani), who very capably set the scene for us all on a subject that is obviously close to her heart; I believe it is close to the hearts of those of us who are here to participate in the debate as well.

As someone who has needed glasses from eight years of age—I am over 50; well over 50, let me tell you—I have never really known any other way; that is the fact of it. I can well remember those first glasses, with those round circles of glass like milk bottle bottoms. Those were the prescription glasses I wore in the ’60s; we have come a long way to the perfection of eyesight and glasses today. In my case, I wear varifocals, and others in this Chamber probably have the same. I look down to read and look up to look away. Varifocals give that better vision, and it is good to have that.

I certainly have compassion for those whose sight is deteriorating or lost completely. I think losing sight is probably one of the worst things that can happen to anyone. How much do we all appreciate seeing things in colour and all around us? There are some who cannot. My dad lost his sight at a late age in life, and I know it is one of the things that he particularly missed. He used to read his Bible in braille in the last few years of his life. To understand that sight loss can be prevented in some cases is something that we must all work towards achieving, and we must play our part in the House.

The Library pack has been quite helpful, and some of the information it gives is particularly applicable. The fact that sight loss costs the UK economy £28 billion is something that cannot be ignored when it comes to adding equations; we understand and appreciate that we have to balance the books, but when balancing the books we should sometimes do the necessary preventive action that the hon. Member for Wealden referred to.

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[Mrs Cheryl Gillan (in the Chair)]

Unless anybody else wishes to speak, we will move on to the Front-Bench contributions. I am pleased to call Marion Fellows.

Health Committee

Cheryl Gillan Excerpts

Thursday 16th March 2017 Commons Chamber

[Dr Wollaston]

We need to start right back at medical school recruitment and what happens in medical schools and beyond, to encourage more health professionals—not just doctors, but nurses as well—to consider psychiatry and mental health services as a career. One of the key issues is the lack of a workforce. I know the Government are working with Health Education England to improve the situation, but we would like to see them go further. Also, we need to ensure that resources get to the frontline.

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

I congratulate my hon. Friend on her chairmanship of the Select Committee and its recent report. She will know that recent studies, particularly one done in Sweden, have indicated that people with high-functioning autism spectrum disorder have a ninefold increased suicide risk. What more could be done to help those individuals and their families? How can we raise awareness among the agencies that intervene with them and their families, and particularly among health professionals, so that they are aware of the heightened risk?

[Dr Wollaston]

I commend the work my right hon. Friend has done over her whole career on autism and to highlight what more can be done to help those individuals and their families. She will know that one of the key barriers is having an assessment in the first place for people who suffer from autism. Too often, they fall between the gaps in mental health services. My key message would be that we must ensure that they receive the services and support that they need and that that is delivered in the right way.

NHS Fertility Services

Cheryl Gillan Excerpts

Thursday 19th January 2017 Westminster Hall

[Steve McCabe]

I certainly agree with the hon. Gentleman about a postcode lottery; there is a massive variation in service, so we must strive to achieve a cost-efficient system that is genuinely national in the way it is delivered. I agree with that absolutely.

This debate is about IVF and related services. At a time of so much concern about the NHS generally, the debate could easily drift towards becoming a series of questions about other aspects of the NHS, but I am clear that we asked for this debate to raise concerns associated with those who need treatment for infertility issues.

Infertility is a problem that does not get a lot of Government or parliamentary attention; in fact, it was not debated at all in the previous Parliament. Yet we know that it is an issue that affects one in six couples in the UK and is the second most common reason for a woman to visit her GP. The problems of infertility are recognised by the World Health Organisation as a condition for which medical treatment should be provided, but that is not how we approach the matter today in England.

I am immensely grateful to my constituent Louise Jackson for bringing this issue to my attention and for giving me permission to share some of her experience with people today. Louise and her partner have been together for more than 13 years and have been trying for a baby for nearly six years. After tests confirmed that they would need IVF treatment, they were refused it because Louise’s partner already had a child, as a result of a previous relationship in 1975. That child is actually older than Louise herself, who has said:

“Anyone who is experiencing fertility problems will understand the agonising pain and upset it brings on a daily basis. The fact that we have been refused treatment on the NHS just adds to the anguish. We cannot express enough how hard it is to not be able to have children naturally, never mind being faced with the fact we’ve been saving for years for the thousands needed for this treatment. I hope one day these laws will be changed for couples like us and others in the near future.”

My information is that four clinical commissioning groups in England—Mid Essex, North East Essex, Basildon and Brentwood, and South Norfolk—have already decommissioned their assisted conception services, essentially as a cost-saving measure. Also, more than one in 10 CCGs in England are currently consulting on reducing or entirely decommissioning NHS fertility treatment. That means that more than 60 Members of Parliament represent seats where the provision of IVF services is at risk.

The guidelines produced by the National Institute for Health and Care Excellence are fairly clear on the provision of IVF services. NICE recommends that all those women who are eligible for IVF should have access to three full cycles of IVF if the woman is aged under 40, and in 2013 it updated its guidance to recommend further that women aged between 40 and 42, and who meet some additional criteria, should have access to one full cycle.

Fertility Fairness is an umbrella body that has the support of several organisations, including the Royal College of Nursing, the Association of Clinical Embryologists, the British Fertility Society, the National Gamete Donation Trust and the Miscarriage Association. In 2016, it undertook an audit of every CCG in England and found that only 16% of CCGs offer three cycles of IVF, which is the NICE recommendation. That was down from 24% in 2013, while the number of CCGs offering just one cycle of NHS-funded IVF treatment has leapt to 60%. The Minister is on record as saying that she finds the decommissioning of such services “unacceptable”, so she will not be surprised if I ask her what she plans to do in response to these figures.

According to NICE, a full cycle of IVF treatment should include one round of ovarian stimulation and the transfer of all resultant fresh and frozen embryos, but only four out of 209 CCGs comply with the NICE definition of a “full cycle”. As a result, in many parts of England, these efforts to provide IVF on the cheap are—perversely—wasting resources, because this incomplete offer is rarely successful and compromises the cost-effectiveness of IVF as a treatment. It is a bit like giving less than the recommended dosage of any other drug or treatment.

As I have said, NICE offers guidance on age appropriateness for IVF. However, without being required to offer any kind of explanation, some CCGs have lowered the maximum age for IVF to 35; others have introduced non-medical criteria, such as refusing couples treatment if one of them has a child from a previous relationship, as happened in the case of my constituent, Louise Jackson; and apparently even more criteria are applied for same-sex couples, including a requirement to demonstrate that they have already paid privately for six cycles of treatment before they can be considered by the NHS. Those requirements do not look like medical criteria to me; they look like crude, discriminatory rationing, based on pseudo-moralistic prejudices.

In Birmingham, CCGs justify their approach by testing their proposals via public consultation, and in 2014 a consultation covering the criteria for eight CCGs across the west midlands was undertaken. Of the 351 people who responded, 40% were against providing IVF to a couple where one party has a child from a previous relationship; 40% disagreed with that view; and 20% did not know. Nevertheless, those proposals are now the criteria that must be met. I cannot imagine such a crude approach being adopted for determining treatment eligibility for any other medical condition, but that of course is part of the problem.

Too many people think, in defiance of the World Health Organisation, that it is a lifestyle issue and not a medical condition. That is not helped by the fact that the Department of Health merely asks that CCGs “have regard to” the NICE guidelines. This recognised medical condition can have a number of related impacts. If left untreated, it can result in stress, anxiety, depression and the breakdown of relationships. A recent survey of almost 1,000 people with infertility problems conducted by Middlesex University found that 90% of respondents reported feeling depressed and 42% reported feeling suicidal, which was up from 20% when a similar study was conducted in 1997. Some 70% reported a detrimental impact on their relationship, and 15% said that it had led to the break-up of their relationship.

The debate is not about statistics, though; it is about real people and the devastating impact that being denied treatment for infertility problems can have on their lives. On Monday afternoon, I took part in a digital debate with many members of the public, and they helped contribute to our debate today. Hundreds of people shared their experiences. I cannot name them all, but I would like to take this opportunity to thank them for their contributions. I want to briefly share just a few examples that illustrate the kind of problems that mean we need to see some significant change in the delivery of this service.

Kelly Da Silva from south Derbyshire said:

“This is such an important issue for me, the anxiety and depression caused as a direct result of infertility and involuntary childlessness has affected every aspect of my life and caused me to leave a successful 12-year teaching career. The emotional and social impacts are absolutely devastating.”

Becky Thomas is from Hertfordshire, and comes under the direction of a Cambridgeshire CCG. She said:

“My local CCG cut the amount of cycles they offer from three down to one and are considering getting rid altogether. I live in one area that actually offers three full cycles however I come under a completely different CCG. It shouldn’t be a postcode lottery. It’s not a lifestyle choice. It’s a medical condition.”

Erin Nina Desirae from Sheffield said:

“I am in a same-sex marriage. My wife and I have been together for six years and have always talked about having children. We assumed that the law in this country would support us and enable us to try for a family with help from the NHS. Unfortunately, we were surprised and hurt to find that same-sex couples are not offered fertility treatment on the NHS until we have first self-funded at least six cycles ourselves. Whilst a heterosexual couple can receive NHS treatment after two years of trying to conceive. This feels like discrimination. Why should we be treated differently?”

What of the costs? Evidence suggests that many of the decommissioning and service reduction decisions are driven largely by budget considerations. Reports show that the cost to CCGs of commissioning one cycle of IVF can range from £1,300 to £6,000. It varies dramatically across the country. For example, it is much cheaper in Newcastle than it is in Birmingham, without any obvious explanation. What kind of way is that to run a health service and provide a vital treatment? Is it not a classic example of the fragmentation of the NHS that many predicted would follow the Lansley reorganisation?

In England, more than 200 CCGs are responsible for setting their own criteria and commissioning their own IVF services. To make matters worse, research suggests that the high cost of IVF in the private sector is forcing people to travel to such countries as the Czech Republic, where IVF treatment is far cheaper. The problem is that IVF is not anywhere near as well regulated in those countries as it is in the UK. As a direct result of reducing services in the UK, the NHS is being saddled with the high cost of complicated multiple pregnancies and births and other postnatal issues. There is also the additional cost to mental health services, which I touched on earlier. [Interruption.] As you can see, Mrs Gillan, I have successfully transposed a page of my notes. I hope you will bear with me for one second.

[Mrs Cheryl Gillan (in the Chair)]

Mr McCabe, this sort of thing happens to people all the time. We will bear with you.

[Steve McCabe]

I cannot believe I have done it, but I am extremely grateful for your patience.

As I was saying, the costs of people having to go abroad fall on the NHS, and that leads to further complications that may impact on our mental health services.

In the course of my speech, I have concentrated on the impact on women, but the issue does not solely affect women. It affects couples, same-sex couples and men. I understand that CCGs that are cutting back on IVF generally are also cutting back on ICSI—I am told that it stands for intracytoplasmic sperm injection and is the most common treatment for men with infertility problems—and I worry that men’s experiences of infertility are not fully appreciated. They may also suffer hidden trauma and stress as a result of their problems. I am grateful to Richard Clothier from Dunstable who said:

“The emotional strain served to us when our infertility was confirmed was absolutely horrific and debilitating. However, this does not touch the sides when compared with the mental health deterioration we endured from the precise point at which we learned our entitlement has been slashed by two thirds. Luton, in the same county, has three cycles, the rest of us in Bedfordshire get just one cycle.”

What do I hope to get from this debate? I hope that the Minister, by the time she has had a chance to reflect on all the contributions and the terrible experiences of so many people, will have heard enough to be convinced that she should set up an investigation into the provision of IVF services in England. I hope she will be persuaded to offer much stronger guidance to clinical commissioning groups that in all normal circumstances they should be expected to comply with NICE guidelines and at the very least offer a clear and unambiguous explanation for their reasons when they choose not to follow NICE guidelines. I hope she will be persuaded to look again at the case for setting a national tariff for the provision of IVF. It is simply ludicrous that when NHS resources are so stretched, as the hon. Member for South West Bedfordshire (Andrew Selous) said earlier, the same treatment can vary in price between £1,300 and £6,000. Those who have suffered with this condition feel they have been ignored and mistreated for far too long. They are entitled to expect that we will now act to address the problem.

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[Colleen Fletcher (Coventry North East) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Gillan. I congratulate my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) and the right hon. Members for Carshalton and Wallington (Tom Brake) and for Wantage (Mr Vaizey) on securing this extremely important and timely debate. As we have heard, difficulty conceiving is a problem that will affect around one in six couples in the UK. I want to highlight the experience of one couple whom I know personally, although many elements of their story will resonate with others who have been affected by fertility problems and experienced difficulties accessing IVF treatment on the NHS.

When that couple made the decision to start a family of their own, there was no doubt in their minds that they would have a child together. Even as the early months of trying yielded no success and as many of the people around them, their friends, family members and colleagues, started to fall pregnant, they remained hopeful and expected that it would simply be a matter of time until they themselves conceived. After more than a year without success, and as the doubts that were absent at the beginning started to emerge, the expected did not happen and a sense of heartache, frustration and anxiety began to replace the hope that had gone before. They visited their GP to ask for help and advice, and so ensued a lengthy process involving tests, hospital referrals, and invasive and non-invasive procedures alike, yet the root cause of the problem remained unexplained.

Just as the couple had all but given up hope of conceiving naturally, they fell pregnant, nearly three years after initially making the decision to start a family together. Here, amid the darkness of their difficult journey towards prospective parenthood, emerged a shining beacon of hope. Yet, as we know, beacons can be so easily and cruelly extinguished, and so it was that only 10 weeks later they endured a devastating and heartbreaking miscarriage. The almost one and a half years that followed the miscarriage were punctuated by a continued inability to conceive, further visits to their GP, more tests and, ultimately, referral back to the hospital. The couple were eventually told in November of last year, nearly five years after starting their journey, that their last, best hope of conceiving was through IVF treatment.

More devastating news was to follow, however, because the couple were told that, despite having a clear clinical need for treatment, they were ineligible to access IVF on the NHS in their area. The reason: their local CCG uses arbitrary access criteria that are not applied in other areas of the country in order to ration access to treatment for financial reasons. A miscarriage in the previous three years is one of the criteria used to deny funding—in essence penalising our couple for experiencing a tragic event over which they had absolutely no control.

The unfairness of the situation is further exacerbated by the knowledge that were the couple to live in a different part of the country—my own area of Coventry, for example—they would be eligible for at least one fully funded cycle of IVF on the NHS. In other areas, they would be eligible for three fully funded cycles. That inequitable postcode lottery adds insult to injury for a couple who, like many others, are already trying to cope with the distressing effects of infertility. The couple are now faced with a situation in which their only opportunity for treatment comes with an enormous financial outlay. Therefore, treatment is reduced to a simple financial decision: those who can afford it have the treatment they need, and those who cannot do not—hardly a just system.

That couple, like many other couples throughout the country who are experiencing fertility problems, deserve fair and equal access to treatment. They deserve an NHS that fulfils its guiding principle of delivering care and treatment free at the point of delivery and according to need. To achieve that, the Government must act to eliminate the regional variations in IVF treatment provision, including the use of arbitrary access criteria, and ultimately seek to ensure that all CCGs routinely commission fertility treatment in line with NICE guidelines. That would mean eligible couples having access to three full cycles of IVF, which would significantly increase the chance of successful conception. I hope that the Minister will make such a commitment.

[Mrs Cheryl Gillan (in the Chair)]

As no other Members are seeking to catch my eye, I will now move to the winding-up speeches. I call the Opposition spokesman, Mr Justin Madders.

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[Steve McCabe]

I thank the various Members who have taken part in this debate: the right hon. Member for Wantage (Mr Vaizey), my hon. Friends the Members for Coventry North East (Colleen Fletcher) and for Ellesmere Port and Neston (Justin Madders) and the hon. Member for South West Bedfordshire (Andrew Selous), who has now left. It is never easy on a Thursday afternoon, but I really felt we had to have some focus on this issue in this place today.

I am extremely grateful to the Minister for the tone she adopted in her response. One reason why I asked her to instigate an investigation into what is happening is that I understand, from a parliamentary question I submitted, that the Government do not, as a matter of routine, centrally collect information on the provision of infertility services. While I acknowledge her point about provision being locally determined, the extent of the disparity has been a revelation to me. It is difficult to believe we are talking about a national health service when we see that level of disparity. I gently say to her that there would still be some merit in a further investigation into the extent of the variation in England at present.

I am extremely pleased to hear that the Minister plans to write to NHS England. I interpret that as meaning she will put pressure on NHS England to put pressure on the CCGs that are not complying with the NICE guidelines. I will certainly take the opportunity to write to NICE about the experience of same-sex couples, as she suggested, although the key here is obviously that the NICE guidelines have to be followed. That is the central problem.

I was extremely pleased to hear that the Minister is taking steps on benchmark pricing, which may well lead to the construction of a national tariff. All I will say on that is: the sooner, the better. If she were able at some stage to offer us a realistic timescale for that, it would be some comfort to the very many people who have contacted all of us to explain the pain and anguish they have suffered as a result of this condition. I am grateful to Members for their contributions and to the Minister for a thoughtful response.

[Mrs Cheryl Gillan (in the Chair)]

This has been a very valuable and important debate.

Question put and agreed to.

Resolved,

That this House has considered decommissioning of in vitro fertilisation and other NHS fertility services.

Diabetes Technologies

Cheryl Gillan Excerpts

Wednesday 23rd November 2016 Westminster Hall

[Mr Howarth]

I see the Minister nodding. This really is a problem. Schools need to be advised on how to deal with these situations, so that in every classroom the teacher is aware, whether or not they have a type 1 diabetic in their class, of what they are supposed to do in those circumstances. The lack of understanding in many schools—not all of them, as some deal with the matter very well—must be tackled.

However, I do not want to be overly gloomy about the problem. Organisations such as the JDRF and Diabetes UK, in conjunction with others, including the all-party parliamentary group for diabetes, of which I am a member, are both raising the profile of the way type 1 diabetics are being failed by the healthcare system and suggesting constructive ways of improving the situation. Later today there will be the launch of a report, not specifically on type 1 diabetes but on how services can be better organised. That is the result of many months of taking evidence from expert organisations. I hope that Ministers will study that report closely.

With regard to progress, scientific research is making great headway. The hon. Member for St Ives, who opened the debate, highlighted some of the scientific research going on and the technologies that are available. It is in my view highly likely that a cure will be found well within the lifetime of today’s young diabetics. Building on the technology that already allows automatic continuous glucose monitoring and automatically pumped insulin, an algorithm for combining the two into an artificial pancreas already exists. The hope is that it will not be long before that technology becomes the norm. More development work is going on, but the research and tests that have been carried out indicate that that system works and can bring about a massive improvement in the lives of young people and others who suffer from diabetes, because it enables them to keep their blood glucose at an even level.

I want to say a few words about a particular problem that some young type 1 diabetes sufferers experience. As we know, as a society we face a problem—particularly, although by no means exclusively, among young women—as regards body image. The media, magazines and society in general put forward an idealised view of what a woman or, for that matter, a man should look like. We know about eating disorders that arise from that wholly inappropriate promotion of a “perfect” shape. I do not profess to be an expert on this issue, but my experience of life is that human beings come in all shapes and sizes, none of which is more acceptable than another—but that is just a personal view. However, some young type 1 diabetics discover—this is easy to find out through social media—that by manipulating their insulin intake, they can achieve rapid weight loss. To some young people, that sounds like a great thing to be able to do. Someone can lose perhaps half a stone in a week simply by not taking the amount of insulin that they require. Of course, the problem is that it leads to major medical complications and, in some cases, can end fatally.

Those who do fall into the habit, which amounts to a highly specialised eating disorder, need to be able to access support from diabetologists and from either psychological or psychiatric specialists. All too often, though, that support is not available—at least not in one place—at the time when the young person needs it most and they are left trying to negotiate a sort of medical specialists ping-pong game between, on the one hand, diabetologists, who do not understand the psychological problem that the young person is experiencing, and on the other hand psychologists or psychiatrists, who do not understand all the scientific and medical issues about their diabetes. I know that that is not the Minister’s specific area of responsibility—[Interruption.] Oh it is, she tells me, great—but I put in a plea for her to really give some thought to how those services can be co-ordinated in such a way that means those young people are not left travelling from one place to another, often with long distances involved, to try to access support, when all they can get is somebody who understands one aspect of their disease and the particular manifestation of that disease they have. We are not talking about tens of thousands of young people; we are talking about hundreds, but nevertheless these are young lives and they need to have proper access to all the services that they require.

I will conclude with a couple of questions, which are asked in an entirely constructive spirit. Can the Minister give an assurance that the Government will take an active interest in the research that is going on into technology, and that it will be properly supported? Does she agree that the achievement of making these technologies normal, particularly the artificial pancreas, needs to be pursued with absolute rigorousness? That could be delivered very quickly if the Government took an active interest in it. Will she commit—both through the technological means and better treatment design—to ensuring that the various services that can prevent serious complications are properly integrated so that the medical ping-pong is overcome?

I hope that I have not gone on for too long. Knowing you as I do, Mrs Gillan, I know that you would have told me if I had. Again, I thank the hon. Member for St Ives for giving me the opportunity to say the things that I wanted to say. I am sure that the young diabetics around this country who have the opportunity to do so, will be glad that at least their plight has been raised by at least one Member of this House.

[Mrs Cheryl Gillan (in the Chair)]

Unless any other Members are seeking to catch my eye, we will move to the wind-ups. I call Mr Martyn Day.

NHS Funding

Cheryl Gillan Excerpts

Monday 31st October 2016 Commons Chamber

[Mr Hunt]

When the right hon. Gentleman and I worked in government, we both campaigned hard on many occasions for more funding for the NHS, including mental health—a particular priority for both of us. The answer to his question is yes, and that is why we are putting in more money in this Parliament. My own view is that in future Parliaments we will need to continue to increase the amount of funding going in to the NHS. The only point I would make is that what funds the NHS is a strong economy, so we have to make sure that increases in NHS funding are sustainable and compatible with a strong economy. That is something that this Conservative Government have a very good track record of delivering.

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

The plans to achieve savings from community pharmacies are causing a great deal of concern in my constituency. The patients group at the John Hampden surgery and residents in and around Prestwood believe that the plans may result in the closure of our excellent rural pharmacy in Prestwood. What reassurances can the Secretary of State give to my constituents today that no pharmacies will close that are more than a mile from any other pharmacy? Will he make sure that he takes into account the implications for GPs’ workloads when looking at pharmacies?

[Mr Hunt]

First, the people of Prestwood are lucky to have such an assiduous MP to campaign for their interests in Parliament today; indeed, my right hon. Friend always does so. I can give her that reassurance, because in the package of efficiencies we set out—it is right that we ask pharmacies to make efficiencies in the way they are run, just as we are asking the rest of the NHS to make efficiencies in the way it is run—we are protecting all pharmacies that are a mile or more from any other pharmacy. In that sense, we are absolutely determined to protect provision for her constituents and all our constituents who depend on rural pharmacies.

Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis

Cheryl Gillan Excerpts

Wednesday 13th July 2016 Westminster Hall

[George Freeman]

Many of these conditions have been known about for years, but it is only now that we are really beginning, through genomics and infomatics, to get a handle on how we might track, spot earlier and use big data to analyse cause and effect and develop new medicines that could intervene. Some of these conditions that have been thought of as never treatable are now becoming treatable because of the pace of biomedical progress. We need to inform our trainee clinicians not to think, “Well, I’m sorry. You’ve got a diagnosis; there is nothing we can do about it. People have suffered for 80 years.” There is a genomics programme, an accelerated access review for new medicines and an early access to medicines scheme, and we are beginning to accelerate getting new cures through into treatment. I will raise the issue of greater awareness of rare disease and what is available for them with the agencies responsible for training medical students.

The right hon. Lady raised the idea of an awareness week, which I think is an excellent idea. The truth is there are many rare diseases and I foresee a clamour for every rare disease to have a week, for which there would not be enough weeks in the year. It may be that one has a rare dermatological conditions awareness week, which would heighten awareness. There may be different ways to do that but her idea is first class. She also talked about money for research; she would not be doing her job if she did not. The Government spend a considerable amount of money on research. The NIHR has a policy of not identifying particular diseases and earmarking money to them but, following the debate, I will raise with the NIHR how much is being spent that would be relevant for sufferers of SJS. I know it is taking steps to amend its research criteria in the years ahead so that it is responding to the progress made in the genomics programme and others.

The right hon. Lady made an excellent point about gene testing. The reason I am so inspired by that quiet revolution is that we are now at a point at which we can start to gene test patients, profile them and get targeted medicines to them. That is already happening with cancer and some other diseases. For the new drugs we have launched in the NHS this year for Hep C, it turns out we can profile which patients will respond in six weeks, in eight weeks or in 12 weeks. That is driving a new model of reimbursement that sits at the heart of my accelerated access review.

Lastly, the right hon. Lady raised the important issue of side effects and the wider science of drug side effects, which the Government are investing in through a whole series of programmes in the Department of Health and NHS England. Understanding side effects can be a cue to the science of new cures. I hope she is reassured that we are taking that seriously and I will follow up—or will ensure my successor follows up, if I am no longer in post after today—the points she has sensibly raised.

[Mrs Cheryl Gillan (in the Chair)]

Order.

Motion lapsed (Standing Order No. 10(6)).

Oral Answers to Questions

Cheryl Gillan Excerpts

Tuesday 10th May 2016 Commons Chamber

[Alistair Burt]

The concerns the hon. Gentleman raises are very real, and they are shared by GPs around the country, which is why we put so much work into analysing them. The recently published “GP Five Year Forward View” addresses a number of concerns brought to us by GPs, but the determination to have 5,000 more doctors working in general practice by 2020 is a reflection of the fact that making sure there are enough doctors physically to work in general practice is an important aim of the Government’s.

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

T8. My constituent Archie Hill and his parents, Louisa and Gary, were really excited when, on 15 April, the National Institute for Health and Care Excellence recommended that the drug Translarna—a breakthrough drug for children with Duchenne muscular dystrophy —should be funded by NHS England. Hon. Members can imagine what happened when, on 4 May, NICE unexpectedly announced that it required extra time to come to an agreement with NHS England. What is going on? We thought this drug had been cleared. Time is of the essence, because the boys affected are eligible for this drug only if they are still walking. Can we please look into this issue, and can we please go back to the original timetable? After all, these boys have had to wait several years to get to this stage.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

I commend my right hon. Friend, and we have had numerous discussions over the last year on this subject. She can rest assured that I am actively doing everything I can to make sure we expedite this. She will understand that there are important negotiations with NHS England, NICE and the company at the moment, which are key to making sure we can get this drug accelerated quickly.

World Autism Awareness Week

Cheryl Gillan Excerpts

Thursday 28th April 2016 Commons Chamber

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

I beg to move,

That this House notes that World Autism Awareness Week was held from 2 to 8 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 diagnosis waiting time and support a public awareness campaign so that people can make the changes that will help the UK become autism-friendly.

We were on recess during World Autism Awareness Week. I want to put on record my thanks to the Backbench Business Committee, which has granted this debate, and to you, Mr Speaker, for indicating that you may be willing to extend the debate because of the demand from people who want to speak in it. I know that there are conflicting Committees going on in other parts of the House, which will cause some problems for people who want to speak in the debate.

I also put on record my thanks, as chairman of the all-party group on autism, for the genuine cross-party view on the subject, and for the help and support I have received from Members of all parties. It is commendable that the House should work in such a way. It is nice to record that the all-party group on autism is, I think, one of the all-party groups that has the largest number of members. That shows the significance of this topic.

In 2015 the National Autistic Society carried out a YouGov poll and found that more than 99.5% of people in the UK had heard of autism. That means that, more or less, we are all aware of autism, which is a jolly good thing. However, just 16% of autistic people and their families whom the National Autistic Society spoke to as part of its recent research said that the public had a meaningful understanding of autism. Despite all the progress that has been made, there remains an enormous gulf between awareness and understanding. The key point here is that although more understanding may seem like a soft issue that everyone across the House can easily get behind without much thought, it is understanding that goes to the core of what people and families who live with autism every day have to deal with.

[Catherine West (Hornsey and Wood Green) (Lab)]

I congratulate the right hon. Lady on all the work that she has done over the years on this crucial subject. She mentioned the National Autistic Society, and I praise it for its wonderful work. Does she agree that stigma around autism among the general public, in educational institutions and among many employers still holds all of society back?

[Mrs Gillan]

That is true to an extent, but I want to balance that by saying that in some areas, many people who are on the autism spectrum are welcomed into the world of work, by GCHQ and other organisations that can take advantage of their unique capabilities. The hon. Lady is right in many areas, however, hence the debate.

[Kevin Brennan (Cardiff West) (Lab)]

I pay tribute to the right hon. Lady for the work that she does. I also thank the Minister, who met some constituents of mine this week; they do not wish to be named in public. The right hon. Lady raised the question of awareness. Does she agree that it is important to have such awareness in our criminal justice system? Adults with autism, in particular, sometimes come into contact with the criminal justice system, and there is an inappropriate level of understanding of issues that may have led to that happening.

[Mrs Gillan]

That is an astute observation. Later in my speech, I will come to the criminal justice system. I hope to set the scene across a range of areas, because there is not a part of government that autism does not touch. There are a range of implications, particularly in the criminal justice system, in which I believe people with autism are disproportionately represented in many areas.

For people and families who live with autism every day, improving understanding is fundamental to ensuring good levels of health and wellbeing and an ability to participate in society. The implications are all too real. The National Autistic Society survey that I mentioned found that 79% of autistic people feel socially isolated; half of autistic people and families sometimes do not go out because they are worried about how the public will react to them; and 28% of autistic people have been asked to leave a public space because of behaviour associated with their autism.

To help to address the lack of understanding and tackle social isolation, the NAS has, as many Members know, launched a three-year campaign called “Too Much Information”, during this year’s World Autism Awareness Week. I was glad to support the launch of that campaign in Parliament. The cornerstone of the campaign is a short film, shot from the point of view of a child with autism, which tries to give the viewer some sense of what it is like to live in the overwhelming world that someone with autism lives in every day. Many parliamentary colleagues joined me for the event, and I am glad to report—this is almost unbelievable, but it is a very good sign—that, to date, the video has been viewed online more than 50 million times. That film marks only the start of the campaign, however, and there is clearly much more that must be done to help tackle social isolation among the nearly 80% of people on the spectrum who say that they feel isolated.

Over the years, Government have shown huge leadership on the awareness of other issues, with more than £2.3 million spent on dementia awareness and £20 million on mental health awareness. [Interruption.] Thank you so much. I wish it was gin.

[Mr Robin Walker (Worcester) (Con)]

rose—

[Mrs Gillan]

At last—the relief of Mafeking.

[Mr Walker]

While my right hon. Friend avails herself of a relieving glass of water, may I ask her whether she agrees that organisations, such as ASPIE in my constituency, that help people with Asperger’s and people on the spectrum to socialise play a really important role in helping to build their confidence and ensure they have the support they need to go into what can often be a very threatening world?

--- Later in debate ---

[Mrs Gillan]

I am doubly grateful to my hon. Friend. He is absolutely right that the achievements of such organisations and programmes should be congratulated by all of us in the House.

Action is needed for the 700,000 people in the UK who are on the autism spectrum and their families. I am aware that the Government have invested £325,000 on autism awareness work, but that is a drop in the ocean if our aim is to ensure, as I believe it should be, that this generation of autistic children grows up in a world that understands them.

At this point, I want to pay tribute to the Minister. Quite honestly, he has attended every autism meeting and function that I have asked him to attend. He shows a great deal of understanding of this area, so I am looking forward to a really meaningful response from him when he winds up the debate at the end of the afternoon. More leadership is definitely needed from the Government.

[Julie Cooper (Burnley) (Lab)]

I am very grateful to the right hon. Lady for the work she does on this really important subject. Does she agree that it is extremely worrying that only 15% of adults suffering with autism are in full-time employment? Would it be right and proper for the Government to support the work of organisations, such as Ambitious about Autism, to help them in the transition into work that could be so crucial for so many?

[Mrs Gillan]

The hon. Lady is absolutely right. I will mention some of the organisations involved at the end of my speech. Ambitious about Autism is just one of the many organisations that are trying to help people with autism into employment. I want to mention that later as well, because it is very important.

To build on the intervention on the criminal justice system by the hon. Member for Cardiff West (Kevin Brennan), I should say that I recently visited Her Majesty’s young offenders institution in Feltham to see at first hand how a deeper understanding of the issues and how some adjustments in the physical environment can help people on the spectrum. The prison recently underwent accreditation from the NAS, and the prison staff’s enthusiasm in, and dedication to, helping the young people in their charge is absolutely admirable and really wonderful to see. I very much hope that members of the all-party group will go there on a visit to see exactly what Feltham has done. Custody can be a really traumatic experience for anyone, but without specific adjustments for those with autism, it is much harder for them to engage in their own rehabilitation. Familiarising staff with autism, allowing prisoners to use communal areas at quieter times, and reducing posters and notices to prevent over-stimulation are just some of the small things that can make a significant difference to the experience of autistic prisoners in custody.

I now want to pay tribute to the Minister for prisons, the Under-Secretary of State for Justice, my hon. Friend the Member for South West Bedfordshire (Andrew Selous), who wrote to every prison in this country asking them to undertake autism accreditation. Currently, over 20 have been in touch with the NAS and its accreditation team and, alongside Feltham, four are going through the process. We want this kind of Government leadership and we want such leadership to be sustained. When I ask the Government to do more on the awareness and understanding of autism, I expect to get this type of response. Far more could be done in the criminal justice system, particular in the Courts Service.

Following the example of Feltham, the public sector can and should do much more to make sure all its services and buildings are more accessible to autistic people, so that they and their families can feel confident that they can visit public buildings and use public services in the same way as everyone else. For example, I was very pleased at the weekend to read that Asda is piloting a “quiet hour” in one of its stores in Manchester, when it will turn off escalators, screens and music for an hour to create a more comfortable shopping experience for those with autism. That is to be commended.

At this point, it would be remiss of me not to mention that Parliament is itself working, under the leadership of Mr Speaker, towards an autism access award and to make sure that autistic visitors to our place of work feel confident that they will be understood and treated well right across the board. In the light of this positive work on the parliamentary estate, I hope the Minister will meet me and representatives from the all-party group and the NAS to discuss how, together, we can build on the early successes of the “Too Much Information” campaign and ensure that all public buildings become accessible to people on the spectrum.

I want to turn to one of the biggest issues facing people with autism and their families, which is the time it takes to get a diagnosis in the first place. I can see from the nods that that rings a bell with everyone in the Chamber. Recent research suggests that, on average, adults have to wait more than two years for a diagnosis. For children, the figure stands at 3.6 years. An autism diagnosis can be life-changing, explain years of feeling different and help to unlock professional advice and support. Government guidelines say that a diagnosis should not be a barrier to putting in place the right support, but 58% of people on the spectrum have told the NAS that a diagnosis led directly to getting new or more support. How can the right support be identified without the clarity of a diagnosis?

[Helen Whately (Faversham and Mid Kent) (Con)]

It is fabulous that we are having this debate today. I want to back up my right hon. Friend on her point about the delay in diagnosis. I have spoken to many families in my constituency who have waited for months for a diagnosis for a child, while the child could and should have been receiving help for their enormous difficulties, but months if not years have been wasted. Yet we cannot even get the data about diagnosis from either the county council or the NHS. Not only are there delays, but there is a lack of transparency about waiting times for a diagnosis.

[Mrs Gillan]

Absolutely. It is clear that, despite the best intentions of the Government, getting such a diagnosis is still crucial, as my hon. Friend says.

[Norman Lamb (North Norfolk) (LD)]

Will the right hon. Lady give way?

[Mrs Gillan]

I will give way for the last time, because I must make some progress.

[Norman Lamb]

May I join in with the overwhelming tributes that have been made to the right hon. Lady for the work that she has done on this incredibly important subject? I do not know whether she saw the in-depth report in The Economist a couple of weeks ago. It reported that a Swedish study has found that the cost of lifelong care for someone with autism could be cut by two thirds with early diagnosis and treatment. Again, the moral case and the economic case for this are overwhelming.

[Mrs Gillan]

I agree. NHS England should collect, publish and monitor key information on how long people are waiting for diagnosis, and how many people are known by their GP to have autism. It should also ensure that waiting times standards on mental health, which are currently in development, reflect national guidance that no one should wait longer than three months between referral and being seen for diagnosis. The Government must share this commitment and ensure that NHS England meets its aims. Timely access to an autism diagnosis should be written into the Government’s mandate to NHS England.

I want to touch on autism and mortality. A recent Autistica report highlighted distressing findings from research in Sweden. The research found that autistic people, taking the population as a whole, have a lower life expectancy than the overall average. The research from Sweden shows that autistic people are at risk of dying younger from almost every cause of death. On average, this is 18 years earlier than the general population. For autistic people with a learning disability, the gap is even larger. The research shows that autistic people with a learning disability in that country die on average 30 years before their time. It also shows that autistic people who also have a learning disability are more likely to die early from epilepsy, and that those without a learning disability are at greater risk of suicide. It is worth remembering that the Swedish healthcare system is different from ours, but given the seriousness of those research findings, it is vital to find out whether they also apply in the UK, and if so, to understand the reasons for that. The Autistica report calls for this to be investigated as a matter of urgency, and I urge the Government to heed that call.

I want to comment briefly about the autism hospital passport, which has been endorsed by the Department of Health. The passport is designed to help people on the autism spectrum to communicate their needs to doctors, nurses and other healthcare professionals. It has been developed by Baroness Angela Browning in collaboration with the NAS. The motivations for starting the project were simple: when it comes to healthcare, the passport enables people on the spectrum and their families to have a much better experience of their interaction with the health service and to gain better, more timely and more fitting healthcare at the right time and in the right place.

I want to touch on various areas that I hope other Members will pick up, so I now turn to education. In specialist schools—the NAS is about to open a new one in the Epping forest area, supported by the Anderson Foundation—we have no fears about teachers’ ability to understand autism. But the training that teachers receive on autism has to be looked at carefully. Nearly 60% of children who responded to a survey said that the single factor that would make school better for them was if teachers understood autism. Teachers agree, and they want that training. A 2013 survey by the NASUWT found that 60% of teachers believed that they did not have enough training in autism. I am aware that work is going on to develop a new framework of core content for initial teacher training courses, but we need to make sure that no teacher enters the classroom without the tools they need to support those in their charge.

An intervention touched on employment, so I turn now to what children on the spectrum want after they leave education. They want the same things we all want out of life: stable, secure and fulfilling opportunities that allow them the same opportunities to lead independent lives. However, currently too few people on the spectrum enjoy the opportunity to find a job to help them maintain that independence. The Government have pledged to halve the disability employment gap—that was welcomed by Members on all sides of the House—and we await the Government’s White Paper, to be published soon; we also note recent assurances from the Secretary of State for Work and Pensions that that is a key priority for him. However, research by Scope has shown that the disability employment gap has remained static over the past year. Clearly the Government cannot rely on an improving economy alone to fix the issue. More will need to be done to close the gap.

The autism employment gap is even worse. The latest data indicate that only 15% of autistic adults are in full-time paid work at all and that 26% of graduates on the autism spectrum are unemployed, by far the highest rate of any disability group. The NAS hears from autistic people that the Government’s mainstream generic programmes do not feel relevant to them and are not addressing the specific and long-term needs of people with autism.

More autism-specific programmes are needed. Research shows them to be more successful. For example, research into one specialist support scheme found that 70% of adults found work when supported by autism professionals. The all-party parliamentary group on autism plans to return to that work later this year. In the meantime, I have several questions. Will the Government’s disability employment White Paper include proposals for ensuring that people on the autism spectrum can access specialist support? Will the Minister report on progress by condition in seeking to halve the disability employment gap, so that low employment rates of people with conditions such as autism can be specifically tackled? Crucially, will he ensure that the new work and health programme records whether someone on the programme is on the autism spectrum?

Autism touches so many areas of Government work that it is difficult to address them all today. For example, I have not discussed social care, mental health issues or benefits. I know many colleagues want to speak and so I do not want to take up too much more time. In summing up, I return to public awareness. Survey after survey of people on the spectrum tells us that better understanding of the condition among both the public and professionals would be the one thing that would help them to feel more secure and allow them to have fulfilling lives. People on the spectrum are reasonable, and do not expect an ordinary member of the public with no knowledge of the condition to be aware of technical details about the diagnostic criteria for autism. However, they feel that just a little more understanding, compassion and awareness would make all the difference to their lives. If we see a child having a meltdown in a supermarket or an adult acting a bit differently on a train, we should stop and think for a moment. They may be autistic, and need our kindness, not our judgment.

I thank all the organisations that have contributed to the knowledge of Members here today, in particular those charities and groups with whom we work closely, including the National Autistic Society, which provides the secretariat for the APPG, Ambitious about Autism, Autistica and the Children’s Services Development Group. I also thank the many individuals who have got in touch with me, and with all other Members here, in the past week. I hope that together we can improve the lives of those with autism and make some real progress in this area.

[Several hon. Members rose—]

--- Later in debate ---

[Norman Lamb (North Norfolk) (LD)]

I have done it already, but I will do it again because everyone is doing it: I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on her leadership on this matter. What she has been involved with, and what we are all involved with as a society, is learning how to understand autism much better and recognising that we fail people badly through our ignorance of the potential and capacity of people with autism to lead fulfilling lives and to contribute massively to society. The hon. Member for Livingston (Hannah Bardell) and the right hon. Member for Clwyd West (Mr Jones) made the point strongly that there is much that people with autism can do in the employment sphere. They can be fantastic employees, contributing a great deal and leading fulfilling lives, but we often fail them. Also, it costs the Government and the economy a great deal when people with autism end up depending on the state because we have failed to provide them with the necessary support early on. That is the big challenge.

[Mrs Gillan]

I notice that we have just been joined on the Front Bench by my hon. and learned Friend the Member for South Swindon (Robert Buckland), who was my predecessor as chair of the all-party parliamentary group on autism. I want to pay tribute to the work that he did. I also want to stress that in bringing in the Autism Act 2009 and in securing this debate today, I was supported by many other Members across the House. It was not just me on my own; it was a real team effort.

[Norman Lamb]

That brings me nicely on to my next point, because I was going to say that this is not one Government’s responsibility; we all have to learn and understand more. The article in The Economist made clear the strong economic case that if we invest in diagnosis and early intervention, we will save a fortune in lifetime care. As we learn, the Government have to respond. That is the challenge. This Government, because they are here now and because new learning can lead to improvements, have a responsibility to respond.

--- Later in debate ---

[Marion Fellows (Motherwell and Wishaw) (SNP)]

Two weeks ago I would not have been able to speak in this debate, but because of a pressing constituency issue I have found myself suddenly having to read up and listen, and I have learned so much today about autism. My only previous experience was teaching some autistic young men who passed through my hands when I was a further education lecturer.

I have become more and more aware of the crying need to raise awareness of autism at all levels—in the general public as well as in public authorities. My hon. Friend the Member for Argyll and Bute (Brendan O'Hara) mentioned the Scottish Government’s plans for autism and their strategy. As part of that strategy, they opened six centres across Scotland to provide a one-stop shop experience for parents and people with autism. The one-stop shop in Motherwell will probably close in June this year. Since that has been announced, I have had innumerable emails from people in my constituency and outwith it, because the shop covers the whole of Lanarkshire. There are two local authorities involved—North Lanarkshire Council and South Lanarkshire Council—which will no longer fund those services. As hon. Members can imagine, that is a devastating blow to my constituents and people across Lanarkshire.

The one-stop shop provides workshops, training for parents and professionals, and support services for those who have autism. Those services are available even before diagnosis: anyone who thinks there may be an issue can go there and get advice. The shop was planning to run further courses for girls with autism, which is a very important area, and it was hoping also to run other specific and technical courses for parents and professionals.

My local authority, North Lanarkshire Council, has indicated that it will continue to fund an organisation called HOPE for Autism, which does good work with families in North Lanarkshire. However, the organisation’s services can be accessed only after diagnosis and its work focuses mainly on socialising and is for children only. There is also an annual fee per child for parents who join.

The reduction in services is devastating news. I do not want to stand in this place and denigrate anything that HOPE for Autism in North Lanarkshire has done and will continue to do, but it does not provide a range of services that parents can access at present. That is causing great distress.

I was unable to attend a meeting at the one-stop shop on Monday, but my office manager went and came back almost in tears at some of the stories that she heard. She said she found it most moving when parents said that they almost wished that their children had a visible disability, or they wished their children had something else, because then they would get more help and more hope and people would understand what was happening with their children. That heartfelt wish brought home to my office manager how little she knew about autism.

I do not think for one moment that North Lanarkshire Council’s motives are bad. I know that there are funding difficulties all over the UK, but I do not think the council understands what the one-stop shop provided. I have a list of some of the wonderful work that it has done. It ran workshops on visual issues and autism, workshops on sleep strategies by Sleep Scotland, workshops on support for young carers, on autism and diet by NHS Lanarkshire, and on autism and play by a Scottish Autism support team, a workshop on demand avoidant behaviour by the paediatric autism consultancy team, and a safe talk autism awareness training workshop by the Richmond Fellowship. All that will be lost in my area.

[Mrs Gillan]

I hope I am buying the hon. Lady an extra minute. What she is saying is very important. Does she think there is any possibility of that decision being reversed, as she is making such a powerful case for keeping the one-stop shop open for her constituents and people beyond her constituency?

[Marion Fellows]

I thank the right hon. Lady for her intervention and the time it may buy me. As she can imagine, the parents are fighting hard to retain the shop and to convince both North and South Lanarkshire Councils that the service must be funded, because of the great work that it does and the benefit that it brings to anyone in North or South Lanarkshire who is affected by autism. Some of the emails that I have had are heart-wrenching, telling of social isolation and nine-year-old children trying to kill themselves. Those emails are full of praise for the help that has been received, the work that has been done and the staff in the one-stop shop, two of whom are seconded from Scottish Autism and two of whom will lose their jobs. I will go on and fight for that very valuable shop in Motherwell.

[Mike Wood (Dudley South) (Con)]

I am proud to be a governor at Halesbury School, which has become a specialist autism school where more than a third of pupils have autism, many undiagnosed when they join the school. I am grateful to the deputy head, Amanda Appleby-Payne, for the insight she offered ahead of this debate.

Two special schools in my constituency are doing excellent work for children with autism. The Brier School has been rated “outstanding” in every category in its two most recent Ofsted inspections, and Pens Meadow provides an incredible level of education, care and support for children with very severe and complex special needs. I was pleased to open its new post-16 facility last autumn, which means that more young people with autism will be able to access further and vocational education.

Autism is a lifelong condition that affects people very differently. It affects how they communicate and how they make sense of the world around them. While many people live largely independent lives, others need more specialist support. Unfortunately, many people live a life full of anxiety, depression, mental health issues and sensory sensitivities that make it extremely difficult for them to function or to access the normal situations and public services we take for granted.

A 2012 study found that about 1.1% of adults were on the autistic spectrum, and a later study found a similar prevalence among children. If this House is representative of the population at large, therefore, we would expect at least seven Members to be on the autistic spectrum.

Unfortunately, the excellent support and education provided to children with autism at Halesbury, The Brier and Pens Meadow are not always reflected in the education system as a whole. There are 120,000 school-age children in England on the autistic spectrum, more than 70% of whom are in mainstream education. The implication is that many teachers in mainstream schools are likely to have children with autism in their classes—if they do not at the moment, they almost certainly will at some stage during their careers.

I pay tribute to the NASUWT for the valuable work it has done on this issue and particularly for the report my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) referred to, which showed that 60% of teachers do not believe they have enough training to meet the needs of pupils with ASD.

[Mrs Gillan]

My hon. Friend is making some powerful points about the education of young people with autism. Is he aware of the work being done by Ambitious about Autism, which shows that the number of special educational needs appeals at tribunals went up from over 1,000 in 1995 to over 4,000 in 2014? Among the most common types of appeal are those involving autism.

[Mike Wood]

Having met Ambitious about Autism and discussed that very point, I certainly recognise the challenge to which my right hon. Friend refers.

Difficulties in the classroom and for families of children with autism often arise because of a lack of knowledge and understanding about the condition. Children on the autistic spectrum often get chastised for not behaving in exactly the same way as other children. Their exclusion rates are extremely high, and figures from the Department for Education show that autistic pupils are four times more likely to be excluded than pupils with no special educational needs.

Teacher training must equip teachers with the knowledge and tools they need to provide all pupils with the best possible support throughout their time in education. That is why I support the call by Ambitious about Autism and the National Autistic Society for autism to be included in the new teacher training framework.

If I may, I will conclude with the words of Mr and Mrs Whitmore, the parents of a pupil at Halesbury:

“We want our son to be accepted—and for him to be accepted equally as a citizen of this country, as his peers are...Autism is only a small fraction of our son; it is not everything he is. Will is so much more than the label society has given him.”

It is for people such as Will and the families who are working to make sure their children and everybody affected by autism can have the best possible chance to fulfil their full potential, whether that is in the workplace or in society as a whole, that we are having this debate. This debate is a huge and positive step forward, and we have seen the quality of the contributions that have been made. I therefore look forward to hearing the Minister’s response.

--- Later in debate ---

[Mrs Gillan]

The debate has had an instant effect. A green card was brought to me with the message, “Thank you so much, but please don’t let it just be kids, kids, kids. Don’t forget the older adults.”

This debate has brought out the best in Parliament and in parliamentarians across the board. There have been important contributions and some amazing personal testimony from Members who are clearly concerned about the subject and about what is happening to their constituents. There is no doubt that progress has been made, but the theme of the debate has been that there is not enough support and understanding. That has come across only too clearly.

I thank all the colleagues who have participated in the debate. I know that the Government are listening. I raised with a Cabinet Minister the lack of people on the autistic spectrum being put forward for public appointments. Yesterday I received a letter saying that he had asked the Centre for Public Appointments to work with Departments across Whitehall to improve diversity and the representation of autistic candidates. That means that people on the autism spectrum can achieve right to the top of our system.

I thank the Minister particularly for his assurances on data collection. I look forward to reading his letter, which he is placing in the Library for all of us. I thank him for the work that he has done but, more importantly, I thank him for the work that is yet to come.

Question put and agreed to.

Resolved,

That this House notes that World Autism Awareness Week was held from 2 to 8 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 diagnosis waiting time and support a public awareness campaign so that people can make the changes that will help the UK become autism-friendly.

NHS: Learning from Mistakes

Cheryl Gillan Excerpts

Wednesday 9th March 2016 Commons Chamber

[Mr Hunt]

The hon. Lady had the chance to be constructive. I do welcome her commitment to a safer NHS, but we need actions and not just words from the Labour party if its conversion to improving patient care is to be believed. She mentioned the junior doctors’ strike. Patients and their families will have noticed that, when it came to the big test for Labour—whether to back vulnerable patients, who need a seven-day NHS, or the British Medical Association, which opposes it—Labour has chosen the union. She brought up the topic, so let me just remind the House of what Nye Bevan, the founder of the NHS, said about the BMA:

“this small body of politically poisoned people have decided to…stir up as much emotion as they can in the profession…they have mustered their forces on the field by misrepresenting the nature of the call and when the facts are known their forces will disperse.”—[Official Report, 9 February 1948; Vol. 447, c. 36-39.]

Bevan would have wanted high standards of care for vulnerable people across the whole week and so should she.

The hon. Lady also challenged the Government on safety, so let us look at the facts. Under this Government: MRSA down 55%; clostridium difficile down 42%; record numbers of the public saying that their care is safe; the proportion suffering from the major causes of preventable harm down by a third during my period as Health Secretary; and 11 hospitals with unsafe care put into special measures and then taken out of special measures, with up to 450 lives saved according to that programme. Before she gets on her high horse, she should compare that with Labour’s record: avoidable deaths at Mid Staffs, Morecambe Bay, Basildon and many other hospitals; care so bad we had to put 27 hospitals into special measures; the Department of Health under Labour a “denial machine”, according to Professor Sir Brian Jarman; and contracts that reduced weekend cover in our hospitals passed by the last Government. They made a seven-day NHS harder—we are trying to put that right. The hon. Lady mentioned money, but she stood on a platform to put £5.5 billion less into the NHS every year than this Government. On the back of a strong economy, we are putting more resources into the NHS. A strong NHS needs a strong economy, and Labour had better remember that.

Let me look at some of the other points the hon. Lady raised. What I said in my statement about the GMC and NMC guidance was that, having said it would change, that guidance has changed and it is now clear that people are going to be given credit in tribunals for being open and honest about things that have gone wrong. She challenged me about the timing for the introduction of medical examiners, so let me remind her of the facts: the Shipman inquiry third report recommended medical examiners in 2003, Labour failed to implement that over seven years, and in six years we are implementing it, which is what I announced today. I am confident that there will not be additional burdens on local government.

The hon. Lady talked about the issue of supporting trusts that do not have the right reporting culture, and that is exactly what we are doing today, because we have published the names of not only the trusts that do not have a good reporting culture, but the names of those that do have a good reporting culture—trusts such as Northumbria Healthcare NHS Foundation Trust, Oxleas NHS Foundation Trust and many others. The trusts that are struggling with this can learn from them.

The hon. Lady says that I need to do more, but, with respect, let me say that the measures we have taken on openness, transparency and putting quality at the heart of what the NHS does and needs to stand for go a lot further than anything we saw under the last Labour Government. I say to her that it says rather a lot that, on a day when this Government have organised a summit, with experts from all over the world, on how to make our hospitals safer, the Labour party is lining up with unions against safer seven-day services. I urge her to think again and to choose the more difficult path of backing reform that will help to make our NHS the safest healthcare system in the world.

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

What a shame that the hon. Member for Lewisham East (Heidi Alexander) did not take the opportunity today to condemn the strikes. Supporting unions and not patients will not impress anyone.

May I welcome my right hon. Friend’s excellent statement, join him in paying tribute to the people who work in our NHS, and particularly welcome the setting up of the healthcare safety investigation branch and the system of medical examiners, which will contribute to better results and better outcomes in the health service?

The Secretary of State has taken a personal interest in sepsis, particularly by responding to the UK Sepsis Trust and Dr Ron Daniels, the Mead family, who tragically lost their son, William, and other relatives of patients who have died of sepsis. He knows that the ombudsman report of September 2013 contained many recommendations, including a request for a public awareness campaign, which could save lives. Will the Secretary of State tell us what progress he has made with that, because the relatives who are campaigning seem to have been waiting a long time for this public awareness campaign that they believe will help greatly?

[Mr Hunt]

I thank my right hon. Friend for her campaigning work on sepsis. Indeed, I have met the Mead family with her. She does a fantastic job with the all-party parliamentary group on sepsis. We announced a plan in January last year as this is a major area where we need to increase knowledge both inside the NHS and among the general public. As I mentioned a couple of weeks ago at a meeting organised by the all-party group, we are now looking at putting in place a public information campaign. We need to establish whether that should be about just sepsis, or whether it should be a more general public information campaign to help parents to understand when they need to worry about a fever, which is very common among small children and might be due to reasons other than sepsis, with meningitis being an obvious one. We are doing that detailed work now and we want to get this absolutely right, but I commend her persistence in ensuring that we deliver our commitments in this area.

Autism Diagnosis Waiting Times

Cheryl Gillan Excerpts

Tuesday 8th March 2016 Westminster Hall

[Jo Cox]

Absolutely. I bow to my hon. Friend’s experience, expertise and doughty campaigning on this issue, and I could not agree with him more. Tragically, as we know, many thousands of people up and down the country, including children, wait far too long for a diagnosis. For children, on average the current wait is now more than three and a half years.

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

I congratulate the hon. Lady on obtaining this debate, which is very important to a large number of people beyond this Chamber. As she knows, I hold the honour of being the elected chair of the all-party group on autism, which has been going for many years now. Diagnosis waiting times are a very important issue for Members of Parliament involved in this area. Does she also hope that we will hear in the Minister’s reply about the importance of NHS England’s collecting and monitoring those diagnosis times for each clinical commissioning group in England? That is important and will mean that we have the data.

[Jo Cox]

I agree entirely. Let us hope that we have an answer on exactly that point from the Minister. I applaud and bow to the right hon. Lady’s commitment and experience on this issue.

While the average waiting time for children is more than three and a half years, many adults receive a diagnosis only five years after concerns first emerge and often two years after seeking professional help. Some 61% of people who responded to a National Autistic Society survey said that they felt relieved to get a diagnosis when it finally came, and more than half—58%—said that it led to their getting new or additional much-needed support. It is of particular concern that children are having to wait so long for a diagnosis. Not only does that place tremendous strain on their whole family, but it means that many children do not receive the early intervention that could have a big impact on their formative years. Indeed, in many cases, children are being locked out of the services available to them, and that support can be life-changing.

Snowflakes is a nursery for children with an autism diagnosis or who are awaiting an autism diagnostic observation schedule assessment. The nursery is run by my sister-in-law, Stacia. One of its children was lucky and got an early diagnosis aged three. He joined Snowflakes and the team worked with him and his family for two years. The dedicated staff managed to help him into a mainstream primary school with support, and he is still in that school and is thriving. Another child came to Snowflakes because her mainstream nursery was unable to cope with her challenging behaviour. She is now on an 18-month waiting list for a diagnosis, but is due to start primary school in just six months’ time. She is making good progress within the specialised setting and is now a role model for other children. Her parents want her to move on to a primary autism resource, but to get a place she needs a diagnosis.

--- Later in debate ---

[Jo Cox]

Absolutely. My hon. Friend again raises a very valid point. We are talking specifically about diagnosis delays, but once someone has a diagnosis, that opens up a whole range of issues that I hope the Minister will address.

[Mrs Gillan]

Further to the intervention by the hon. Member for Huddersfield (Mr Sheerman), one of the key things that the all-party group has been pushing for is better data collection in local areas so that we can more effectively plan and commission services. Nationally, it would mean that we could then ensure that each area is meeting the needs of its local population. Does the hon. Lady agree that it will be interesting to see whether the Minister can tell us what discussions he has had on that and how he intends to take the subject forward appropriately and properly with NHS England?

[Jo Cox]

I agree entirely, and one of the worrying things that became apparent to me in my research for this speech is the growing regional disparity in autism diagnosis waiting times, as well as in the service someone gets once they have a diagnosis. Let us hope that the Minister addresses that point.

My constituent from Batley has given up his job so that his son can attend school every day. As I have said, the problem exists not just in my constituency, but up and down the country, and stories from the NAS highlight that. There is Mel from Watford, whose son waited nine years. Noah, who is four, waited two years for his diagnosis—that is half his life. Meanwhile, data from Public Health England from the latest adult autism strategy show huge regional variation in adult services, with waiting times between referral and first appointment —not even the whole diagnosis journey—in the south-west reaching 95 weeks. In my region of Yorkshire and the Humber, it is 84 weeks. The NICE quality standard on autism is clear: once referred, people should wait no longer than three months before having their first diagnostic appointment. For this to happen, the Government, local authorities and NHS England need to act.

In my own local authority, Kirklees, despite strong leadership and a clear commitment to protect and safeguard vulnerable children and adults, there is an acknowledged crisis in children’s mental health and autism services. Some families have been waiting more than two years for a diagnosis, often longer. I have been encouraging Kirklees and its clinical commissioning groups to clear the backlog and redesign their services, and I am pleased to announce that, starting last Friday, a plan to clear the backlog within 12 months is now being rolled out regionally. This will quadruple the number of diagnoses that can take place in my constituency.

--- Later in debate ---

[The Minister for Community and Social Care (Alistair Burt)]

It is a pleasure to serve under your chairmanship, Sir Roger. I congratulate the hon. Member for Batley and Spen (Jo Cox) on securing the debate and on how she has represented her constituents’ particular interests and also the wider interests of those with autism. I thank colleagues for their interventions. The hon. Lady is right: there are a number of colleagues in this room with considerable experience in autism. Before I get into specifics, let me say that I will not have time to answer all her questions, but I will write to her on those that I cannot answer.

The debate raises once again one of those issues that in the course of my parliamentary lifetime has changed markedly. Only a generation ago, recognition and understanding of autism was extremely vague, but now it is very different. Recognition of the need to treat and to understand the families involved is beyond where it was, but that creates pressures in the system.

I want to say a little bit about what is happening locally. What the hon. Lady has described is a good example of how things can be recognised over a period of time. As she said, it is not the responsibility of one particular Government, but the responsibilities have grown over time, and what has been done about them might be a pattern for others. I will also say something about what we are trying to do nationally. I also want to recognise the work done not only by parents and those who are intimately involved, but by the National Autistic Society and the Autism Alliance—organisations that have done much work to represent those involved and will continue to do so.

Before I forget, I should respond to the hon. Lady’s last question: I would be very happy to spend more time discussing autism in the House. We ought to have a three-hour debate, or longer, and I would be very happy to respond to that. There are a number of questions out there about autism, not only in the House but in other places, and I would be happy to try to answer them, although I would have to deal with the general rather than the specific.

[Mrs Gillan]

As chair of the all-party group on autism, I am hoping to apply for a three-hour debate so that we can celebrate national autism week. I hope that the Backbench Business Committee will look on my application favourably, and I am sure that several colleagues present would not mind signing up to it as well.

[Alistair Burt]

I am sure it is of little interest to the Backbench Business Committee whether or not a Minister welcomes a debate, but if it is in any well helpful, colleagues can be sure that I would indeed welcome such a debate.

Before addressing the national picture, I shall discuss briefly the situation in Batley and Spen. Why has it taken so long to resolve the issues there? The list built up over a period of time because of pressures on both autism services and child and adolescent mental health services, and because of how services were commissioned. The number of referrals has increased to a level greater than one would expect based on national prevalence, so the clinical commissioning groups involved—North Kirklees and Greater Huddersfield—had to identify a service that had the right capacity and expertise to meet requirements. Colleagues who made points about training and the need to ensure that professionals are in place were absolutely right.

The CCGs have been working on the service for some time. As the hon. Member for Batley and Spen said, the issue has been identified and they are investing £340,000 over the next 12 months to bring down the backlog, including agreed funding for additional diagnostic capacity. The CCGs recently appointed Socrates Clinical Psychology, an independent sector organisation, to deliver extra assessments over a 12-month period, and they are about to begin writing to parents and guardians to inform them of developments. Appointments will be prioritised based on the length of time patients have been waiting for an assessment. As the hon. Lady said, the extra capacity will see the number of assessments rise from four a month to around 16.

The CCGs are currently in the process of redesigning adult social care services to meet national guidelines, to provide a greater number of assessments and to avoid the development of long waiting lists in future. A draft service specification and business case, which includes several options, will be discussed by the CCGs in the coming months, and the new service is to be in place by, at the latest, March 2017, when the existing contract comes to an end. Their response in recognition of the pressures that have built up is to be commended.

It is important to understand what is happening nationally as well as locally. We are all agreed on the importance of the timely diagnosis of autism. Although diagnosing someone with autism can be complex and involve a number of different professionals and agencies, it is clear that some children and adults can wait too long. Getting an autism diagnosis can be particularly important for families who are worrying about their children or for adults who did not have their condition recognised when younger and who need support to live their lives.

Yes of course early diagnosis saves money, but as my hon. Friend the Member for Tonbridge and Malling (Tom Tugendhat) said, it is not simply a question of saving money later in the system: early recognition makes such a difference for the families involved, as well as the individual. That is taken as read, which is why there is now much more concentration on early diagnosis than there used to be.

Young people with autism face challenges to their education and wellbeing in all areas of their lives, and that can have an impact on their academic attainment and their ability to make the transition to independent adulthood. For adults who have not been diagnosed, their life to date may have been affected by a sense of not fitting in and not understanding the way they respond to situations or why they find social settings difficult.

Let me outline the framework that is in place to improve the lives of adults with autism. The 2010 cross-Government autism strategy, which came out of the Autism Act 2009, was updated in 2014 as “Think Autism”. New statutory guidance was issued in March 2015 which set out what people seeking an autism diagnosis can expect from local authorities and NHS bodies. The aim of the adult strategy is to improve the care and support that local authorities and NHS organisations provide for people with autism.

Nevertheless, we know that there is more to do to ensure that all those with autism get the help and support they need. In January, the Government published a progress report to further challenge partners across Government in areas such as education, employment and the criminal justice system—the latter was mentioned by my hon. Friend the Member for Tonbridge and Malling. The reforms to the special educational needs and disabilities system that came into effect in September 2014 represent the biggest change to that system in a generation. They are transforming the support available to children and young people, including those with autism, by joining up services across education, health and social care to identify and meet their needs.

The Department of Health’s mandate to NHS England for 2016-17 sets the priorities for the NHS and signals what the Department will hold the NHS accountable for. It includes an important call on the NHS to reduce health inequality for autistic people. Waiting too long for a diagnosis can be one of the health inequalities that autistic people face. Local authorities and the NHS should work in collaboration so that there is a clear pathway to diagnosis that is aligned with care and support assessments. Commissioning decisions need to be based on knowledge and awareness of autism and the needs of the local population, and, importantly, informed by people with autism and their families.

We know that in some parts of the country more needs to be done on developing diagnostic assessments. The hon. Member for Batley and Spen referred to the bane of the NHS system: local variability and the fact that things are not always done in the same way in the same place. I absolutely support the call by the National Autistic Society to ensure that good practice is shared across all areas. It is essential that the practice of the best becomes the practice of all, and I know that right hon. and hon. Members support that.

To help to standardise and improve the care and management of autism, particularly around diagnosis, and to enable health and social care services to support people with autism more effectively, NICE has published three clinical guidelines on autism and a quality standard. It recommends that there should be a maximum of three months between a referral and a first appointment for an autism assessment, and the NHS should follow that recommendation. Local areas will continue to be asked to assess their progress on implementing the adult autism strategy through Public Health England’s informal local area self-assessment exercise.

Let me address the point made by my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), as well as by the hon. Member for Batley and Spen. The Department of Health has discussed with NHS England the difficulties that can arise in getting a diagnosis. As a first step, NHS England, with support from the Association of Directors of Adult Social Services, is currently undertaking visits to CCGs and local authorities with the specific purpose of developing an understanding of the existing diagnostic process for children and adults, including engaging with people who have had experience of accessing the process, and their families. The focus is on identifying local barriers and how they can be overcome; how local areas measure quality and outcomes; the alignment with care assessments; and the identification of positive approaches that can inform learning for other areas. NHS England will issue an initial report in April, once the visits are complete.

To help with local planning, NHS England has also made a new commitment to collect data on the number of people in touch with learning disability and mental health services who have a diagnosis of autism. It is not for me as a Minister to task NHS England formally with monitoring waiting times; it is for NHS England to determine how it holds commissioners to account. Nevertheless, it will have to demonstrate effectiveness to me in meeting its mandate requirement. It is essential that waiting times are monitored locally by commissioners and included in their oversight of provision. I am interested to see the information that will be collected on the commissioning exercise that was mentioned. That information must be made public and will help with the provision of much-needed extra data about this subject. I hope that will help the new commission, the all-party group and others.

It is important to note that there are others involved. I draw particular attention to the service provided by our hard-pressed and excellent GPs. They are, of course, usually the gatekeepers to diagnostic services, and need to have a good understanding of the autistic spectrum and the diagnostic pathway that has been developed in their area. To build knowledge and expertise among health professionals, the Department has provided financial support to the Royal College of General Practitioners’ clinical priorities programme on autism, which is undertaking practical work on autism awareness and training for GPs. That will enable people who may have autism to be supported more effectively from the start of the assessment process.

In recent years there has been considerable progress on how effectively we identify and support the needs of people of all ages on the autistic spectrum. I do not deny that the complexity of autism and the multifaceted nature of the needs of those on the spectrum pose particular challenges to professionals and commissioners. CCGs locally and NHS England at a national level are working to bring down the waits in line with NICE guidelines, working with many different agencies, along with service users and their families, to create a more responsive environment of diagnosis and support. I know that the House will welcome that, although there is more to do.

Question put and agreed to.