Epilepsy

Cheryl Gillan Excerpts

Thursday 26th February 2015 Commons Chamber

[Laura Sandys]

I very much welcome that intervention. I was going to mention that case, which is extraordinary for two reasons. First, why would the young woman lose her job? She already had the job and was succeeding in it, so why was the sudden revelation of her epilepsy a reason for losing it? Secondly, her manager said that it had absolutely no impact on her ability to perform her role.

This is, in many ways, a 19th-century attitude. It is the expectation that when one tells somebody that one is epileptic, they expect one to be dropping to the floor foaming at the mouth. Many in this Chamber may not know that until the 1970s I, as an epileptic, would not have been allowed to marry—although I am sure that many did because they did not declare that they had epilepsy. That is the sort of stigma that we were dealing with not so long ago. It is a Dickensian, 19th-century perspective. I believe, fundamentally, that that lies a little at the heart of why, for a chronic condition that impacts one in 100 people—more than many other conditions—epilepsy does not get the right level of attention. This is an important task for us here in the Chamber and for the all-party group on epilepsy, and for me to continue outside this place. Many other conditions have overcome embarrassment and stigmatisation. It is absolutely crucial that we start to address this through our public services, our schools and education system, and our hospitals and GPs.

It is important that those of us with epilepsy are much more vocal. I hope that the Serjeant at Arms will not come and arrest me, but my hon. Friend the Member for Blackpool North and Cleveleys and I have actually broken the rules of the House. We did not exactly sneak up Big Ben, but we broke the very clear rules saying that anyone with epilepsy is not allowed to go and look at it. We thought, “You try and catch us!” We broke the rules of the House, and went up to the top. We have used that as a platform for saying that we should both contest it when epilepsy is not supported effectively enough, and challenge people who do not understand epilepsy enough and are fearful of those who have it. We think it took 150 years for somebody with epilepsy to go up Big Ben, and we are trying to identify other rules that we can break, so if hon. Members hear that my hon. Friend and I have got into trouble, they will know what it is all about.

Epilepsy has a very wide range of symptoms. I am very lucky to have very mild epilepsy. It is controlled and I am on medication, so there is no issue and I am very unlikely to have a seizure. However, it is incumbent on people such as me to be a voice for people who are suffering, and who may have a seizure every 10 to 15 minutes. I know that my right hon. Friend the Member for Chesham and Amersham, like Young Epilepsy and Epilepsy Research, very much focuses on people with chronic epilepsy. Such people do not necessarily have a voice, and it is for us to make their voice heard.

The issue that has arisen in relation to the lady from London Underground is not the only example. Several people have e-mailed their Member of Parliament and asked me to raise their concerns. A young woman with a masters degree cannot find a job because employers say that she has declared she has epilepsy and they are concerned that she may become a problem for the company. That has now happened 12 times, but it must not continue. We must ensure that employers, the police and hospitals—even in a hospital, someone having a seizure has been accused of being drunk and disorderly—understand people with epilepsy and recognise their condition for what it is.

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

May I congratulate my hon. Friend on leading the charge in getting this debate? She will be very sadly missed in this place, where she has made a tremendous contribution. Does she agree that it is very important to understand more about the condition of epilepsy? Another area in which I take a great interest is autism, and it is estimated that 46% of children with autism also have seizures. Does she agree that we do not yet know enough about the relationship between epilepsy and other conditions, such as autism, to enable us to succeed on behalf of such people?

[Laura Sandys]

Absolutely. I totally agree. In many instances, people with epilepsy also have other chronic conditions, which are no doubt contributory factors. The level of support for research on epilepsy is significantly lower than for other conditions. Again, it is seen as a secondary or tertiary priority when it comes to research funds. It is absolutely crucial to understand the interrelationship between epilepsy and autism, as well as between epilepsy and school achievement and all sorts of not only chronic conditions but life-restricting—as well as life-enhancing—problems. I believe that we need a lot more research, but this comes down to people being clear that epilepsy matters.

--- Later in debate ---

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

It is an honour to follow the hon. Member for Vauxhall (Kate Hoey), and I hope that she obtains justice for her constituent. It is also an honour to follow my hon. Friend the Member for South Thanet (Laura Sandys). As I said earlier, she will be a great loss to the House, and I am personally sorry that she is leaving this place because I think she has added a great dimension to it, particularly on the subject of epilepsy.

I declare an interest because the Epilepsy Society is based in my constituency and I am proud to be a vice-president. It has been working with and for people affected by epilepsy for 123 years. Although the detail of its aims and objectives have altered over the years, fundamentally it remains true to the vision set out by the group of philanthropists and neurologists who established it in 1892—to cure, treat and prevent epilepsy. It is unique.

At the Epilepsy Society’s Chalfont centre, groundbreaking epilepsy research laboratories are co-located with England’s only dedicated epilepsy assessment and treatment centre. Led by medical director Professor Ley Sander and head of genetics Professor Sanjay Sisodiya, some of the world’s pre-eminent epilepsy researchers and clinicians undertake research and clinical practice at the Chalfont centre. The Epilepsy Society’s researchers have been central to new scientific discoveries, in particular research that demonstrates the breadth of genetic influences in epilepsy. The society also brings together state-of-the-art diagnostic tools for epilepsy in one place, including the UK’s only dedicated epilepsy MRI scanner and a specialised epilepsy therapeutic drug monitoring service that is provided to hospitals across the UK and Europe.

The Epilepsy Society is also part of a unique three-way partnership with the NHS and with academia—the national hospital for neurology and neurosurgery at University college London—that has the benefit of translating research into clinical practice, providing access to funding, attracting top researchers and clinicians and providing the flexibility to innovate. The partnership has been recognised by the World Health Organisation.

[Steve Baker (Wycombe) (Con)]

My right hon. Friend has taught me something today—I did not know that my constituency was adjacent to such a fantastic centre. Will she confirm that it is a national centre serving a population wider than just our constituencies?

[Mrs Gillan]

That is absolutely right—it is a national centre.

Under our new chair, Helen Pernelet, and the new chief executive, Angela Geer, the Epilepsy Society has an ambitious new vision to leverage its medical research strength to revolutionise how epilepsy is diagnosed and treated. Of course, there are issues facing the society’s specialised medical and research facilities, but sadly, with only eight minutes in which to speak, I might not get through them all. For the Minister, there are co-commissioning concerns. Under the Health and Social Care Act 2012, the responsibility and budget for specialised services were brought together in NHS England as the sole national commissioner of specialised services, but since May 2014, it has U-turned on national commissioning. Instead, the new proposals for co-commissioning would see responsibility for the vast majority of specialised services shared with local clinical commissioning groups.

The Epilepsy Society is opposed to the co-commissioning of specialised epilepsy services for several reasons. NHS England asserts that national service specifications will continue to apply to co-commissioned specialised services, but it is uncertain how that will be achieved, given that CCGs are independent bodies. If CCGs are allowed to reinvest savings from specialised commissioning in other areas of their budget, it might create an incentive to underspend on specialised services, raising questions about the level of investment. There is also evidence that CCGs are not in a position to engage with specialised commissioning in areas such as neurology. For example, the Minister will know that the Neurological Alliance’s recent report, “The Invisible Patients”, found that only 26% of CCGs had assessed the prevalence of neurological conditions locally and that only 14% had assessed the cost of neurological services.

I also wish to highlight the Epilepsy Society’s opposition in principle to the introduction of a marginal rate in specialised commissioning and its concern about the lack of clarity in neuroscience specification. There is an ongoing lack of clarity over the division of responsibility between NHS England and CCGs for commissioning neurological services, and there is continued confusion about precisely which services fall under the scope of specialised commissioning arising from inconsistent statements in the manual for prescribed specialised services and the neurosciences service specification. I hope that the Minister can respond to the society’s calling on NHS England to clarify this important service specification to ensure nationally applied standards for specialised epilepsy services.

I encourage the Minister to improve access to the Government’s flagship 100,000 Genomes Project. It is an exciting development that the Epilepsy Society strongly supports, but the project’s focus is largely on cancer and rare diseases, making it unlikely that more than a handful of epilepsy genomes will be sequenced as part of the groundbreaking initiative, despite the huge potential that genome sequencing has for transforming epilepsy. I would like to see the Government continue to invest in genetics research and its translation into clinical practice and to ensure that it benefits patients with epilepsy, but I would particularly like to see the genome project embrace epilepsy.

The need to reform the current system for accessing effective medicines will become ever more important in the context of increasing the availability of personalised medicines. I have been working locally with Daiichi Sankyo on patient access to novel oral anticoagulants, and there is a gap that the Department of Health needs to address across the board.

In my remaining minutes, I would like to draw attention to the issue of laser ablation surgery. I have recently dealt with a distressing case of a constituent who sadly lost a family member to epilepsy. The constituent expressed great distress that a surgical treatment known as laser ablation therapy had not been made available to her and her child as a treatment option. Laser ablation is a relatively new surgical technique that burns away accurately targeted tissue with a surgical laser. The technique is much less invasive than traditional brain surgery, and enables surgeons to operate deeper in the brain. It is also much more accurate and carries fewer risks of complication. Laser ablation can be a good choice for patients who have few other treatment options either because medication does not control their seizures or because the lesions in their brain that cause their epilepsy are deep and hard to reach using open brain surgery.

A significant minority of epilepsy patients—approximately 12,500 in the UK—would benefit from surgical treatment, including laser-guided surgery. In around 60% of these cases, surgery can be curative. Evidence shows that it also contributes to reducing premature mortality in epilepsy. Sadly, despite these benefits, only around 300 patients a year are currently given this treatment. I think that the Department of Health should urgently review the number of patients with access to neuro-surgery each year, particularly surgery that uses the new and less invasive techniques such as laser ablation.

Finally, I mentioned the connection with autism, to which my hon. Friend the Member for South Thanet responded during her opening speech. It is obvious that although we have made great strides on epilepsy since the days when epileptics were not allowed to marry, we still have a long way to go. I hope that the Minister will respond positively to the questions raised on both sides of the House about the future of epilepsy in the hands of the NHS.

--- Later in debate ---

[Steve Baker]

I am extremely grateful to my right hon. Friend.

Mr and Mrs Monks feel that there was a significant breakdown in the care of their daughter, and I certainly agree with them. The speed and severity with which her mental health deteriorated due to her epilepsy medication were not considered a priority—they were not adequately prioritised—and they feel they have been badly let down by the medical professionals they saw in the days leading up to Jessica’s death.

Jessica’s death was apparently avoidable. We need to know why it was not avoided. There are a number of questions to be answered by the NHS and the investigation is ongoing, as, indeed, is the coroner’s inquest. I contacted the coroner before raising this case and they were content for me to do so. I will not run through all the questions, some of which are apparent, but I should like to ask in particular why was the consultant neurologist not more available? Why, when it is well known, as the Library brief explains, that some of this medication can cause these side effects, was more immediate, perhaps telephone, support not available in the event of an episode?

[Mrs Gillan]

Among other things, I sit on the Public Administration Committee and we are responsible for the health ombudsman. Will my hon. Friend make sure that the details of this case are passed to the Committee and to the ombudsman, because we are looking into how complaints are dealt with and how we can learn for the future from such tragic experiences?

[Steve Baker]

I am extremely grateful to my right hon. Friend. I have already passed the details to the Minister. I am aware of the inquest and the NHS investigation, but I will certainly take her advice and give those other bodies the opportunity to investigate.

That brings me on to the specific issue of consent. I have spoken to Mr and Mrs Monks today and they say that at no point was it explained to them that this medication could have these side effects. Jessica was 17 when she started taking it, and I feel that that possibility really should have been explained to her parents. They should have had the opportunity to take very strong action. Of course, they did take very strong action—they took the strongest action they could—and it seems to me, without wishing to pass judgment, that the key problem was that they could not get hold of the neurologist.

Jimmy Savile (NHS Investigations)

Cheryl Gillan Excerpts

Thursday 26th February 2015 Commons Chamber

[Mr Hunt]

The hon. Gentleman makes an important point, and I have great sympathy for his constituent. The information was not collated centrally. There were a number of reports about which we might have been sceptical if we had read them in isolation, but when we read them together with other reports, we see a pattern and we can conclude, as the investigation has done, that those incidents did indeed take place. That is one of the big learning points: we have to collate information that different victims provide at different times, to ensure that proper judgments can be made and that action can be taken.

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

It has been truly sickening to read in the report that over two decades, money, influence, celebrity and people being star-struck could allow Savile the licence serially to abuse so many people, particularly in our local Buckinghamshire hospital at Stoke Mandeville. I really welcome the apologies from the Secretary of State and from our local chief executive officer, Anne Eden, who has given a heartfelt apology and praised the courage of those who have come forward. May I press the Secretary of State further on mandatory reporting? It is exceedingly important that we start that consultation as rapidly as possible. It was obvious that the proposed clause in the Serious Crime Bill was flawed in many ways. When will he start the consultation, and when will the terms of reference be available? Will he now undertake to legislate as soon as the consultation has produced results?

[Mr Hunt]

I can certainly give that undertaking: we will start the consultation as soon as possible and if the conclusion is for legislation, we will legislate as soon as possible. I hope that my right hon. Friend understands that there is a great deal of complexity involved in getting this right. It is very important to talk to victims and to people who are looking at the evidence on mandatory reporting, which happens in other parts of the world, with very mixed results. Most importantly, we want to avoid the unintended consequence of a decision being taken against the interests of a child or vulnerable person because people are following a legalistic process which undermines the proper professional judgment made on the ground.

Francis Report: Update and Response

Cheryl Gillan Excerpts

Wednesday 11th February 2015 Commons Chamber

[Mr Hunt]

I welcome the broadly constructive tone that we have heard today. May I say, in that spirit, that I hope that that represents a change in substance from some of the other exchanges we have had on these topics? The right hon. Gentleman tried to vote down the legislation that set up the new chief inspectors and he opposed the holding of a public inquiry into Mid Staffs. If we are to have constructive agreement across the House, I do think we need to agree on substance as well as on tone. Let me just take the individual points he mentioned.

We are completely committed to death certification. That was recommended in the wake of the Shipman inquiry. The right hon. Gentleman’s Government took a very long time to do anything on this and we have been trying hard to do it. It is a complicated thing to get right. On the question of looking properly at avoidable deaths, I just want to say this. It is very difficult, when one looks at case notes, to work out whether a death was avoidable or not, but we think we have a methodology to do that. It is more difficult to relate that to individual trusts, but we want to try to achieve that as well. I was disappointed at the weekend that when we announced that, his response was that it was unambitious. Two weeks earlier, he had published Labour’s 10-year plan for the NHS, which did not actually mention reducing avoidable deaths at all. What we are proposing is the most ambitious thing that any health care system has proposed anywhere in the world, and I hope it will have his full support.

On the right hon. Gentleman’s comments about not generating a climate of fear, he is absolutely right; it is really important, in getting the culture right, to make sure that people are supported to speak out and that there is not, as an unintended consequence, the kind of bullying and intimidation that Sir Robert says is all too common today. I suggest to him that one of the reasons for that climate of fear has been over-dependence on top-down targets as a way of running the NHS. That is what has created the fear in managers that sometimes has led them to treat their staff in the wrong way. What would be very constructive would be a recognition from Labour that that top-down targets culture did go too far, and that we need to rely on transparency as a way of improving performance as a much better tool than endless new targets.

In anything we do—this is something else where I agree with the right hon. Gentleman—we must look very closely at making sure that we learn these lessons in the social care sector as well. That is particularly clear when we look at the scandal of what happened in Rotherham. That is why, when we introduced the new CQC inspection regime following the original Francis public inquiry, we did not just set up a chief inspector for hospitals but set up a chief inspector for general practice and for adult social care. We are now getting the same Ofsted-style transparent rankings of how good care is in care homes, and indeed in domiciliary care. I know that he, like me, is concerned about 15-minute care visits. I think those inspections will help to root out those problems.

With respect to nurse numbers, I really do think that is something on which, if the right hon. Gentleman wants to be constructive, he should commend the Government’s efforts. We have 8,000 more nurses in our hospital wards than we had four years ago. Of course, as a short-term response a lot of hospitals are employing nurses through agencies. That must only be a short-term response. We need proper long-term commitment to institutions, which we do not get with agency staff, but I commend hospitals that have said, “While we try and get enough staff in place for the long term we are not going to wait, because we need to make sure that patients are safe today.” They want to do what it takes to do that.

Finally, on the risk register, I simply remind the right hon. Gentleman that when he was Secretary of State he blocked the publication of the risk register. As a Minister, he said:

“This would inhibit the free and frank exchange of views about significant risks and…management, and inhibit the provision of advice to Ministers.”—[Official Report, 23 March 2007; Vol. 458, c. 1192W.]

More broadly, I just want to say this. There are many patients and whistleblowers looking at today’s exchanges and wanting to see constructive agreement on the way forward. I think we can get a measure of that. What they say they want is not just words, but actions.

As we put staff and patients first in England, will Labour do the same for patients in Wales and today commit to a Keogh review of high mortality hospitals, commit to a chief inspector of Welsh hospitals and commit to protect staff who speak out in Wales, as we want to do in England? Will he commit to putting right a top-down culture that prioritised the needs of the system over the needs of individuals? Will he, as we do, recognise that that is always the danger of treating the NHS as a political possession and not as a service for patients? Patients must always come first. Staff who want to do the right thing for patients should always be heard. Our NHS deserves nothing less.

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

May I endorse the Secretary of State’s remarks on Wales, having seen it at first hand? Having seen at first hand a constituent who was a whistleblower, and how her career and her family life have been so badly affected after she did the right thing, I know that what the Secretary of State has done today will be widely welcomed.

On the Public Administration Committee, we took evidence from the CQC and others, and it became very obvious that there is still a major problem with complaints procedures for patients and their relations. Patients often tell me that they are afraid to complain about the way that they are being treated in whatever NHS establishment they are in. Is there some way in which the Secretary of State can ensure that there are clear instructions in all NHS establishments on how patients and their relations can raise their valid concerns without their worst fears being realised?

[Mr Speaker]

Order. The right hon. Lady, whom I know extremely well as a Buckinghamshire colleague, rather like Treebeard does not believe in unnecessary or undue haste, but if I could suggest to colleagues that questions could be pithy rather than too leisurely I think we would all profit from that. The same goes, of course, for the Secretary of State, from whom we expect characteristically pithy, succinct responses.

Human Fertilisation and Embryology

Cheryl Gillan Excerpts

Tuesday 3rd February 2015 Commons Chamber

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

I am most grateful to the hon. Lady for setting out a balanced case. Can she clear something up for me? I understand that there are two sources of mitochondrial disease: the DNA in the nucleus as well as the mitochondrial DNA. Can she confirm that mitochondrial disease from the nuclear DNA will remain in our population even after this treatment is licensed?

[Luciana Berger]

I hope the Minister might be able to address that in her response to the debate, with the support of her officials. It is not something I have been made aware of, and it certainly has not come up in any of the discussions or debates that I have attended.

I will now conclude, as I know that many Members wish to contribute. The research has been done, the reviews carried out and the experts and the public have been consulted. Time is precious for those parents at risk of passing on mitochondrial inherited disease to their children, and I believe that we must not delay any further.

--- Later in debate ---

[Mr Willetts]

It is absolutely true that mitochondria can be inherited through the mother, but it does not change the character of the baby.

Secondly, let me consider the health and safety objection. Sometimes that objection is being used as a cover for what is really an underlying objection in principle. The scientists say, with typical caution and care, that there is no evidence that this is unsafe. It is true that nobody can have 100% certainty about that, but there have been 15 years of research and seven years of scrutiny, including by various scientific bodies and ones promoted under this Government, and so far no one has been able to come up with a concrete and powerful objection that suggests that the process is unsafe. It is right for us today to be considering moving on to the next step.

[Mrs Gillan]

Will my right hon. Friend give way?

[Mr Willetts]

Let me make some progress, as others want to speak.

Thirdly, I hear a rejection on the grounds that we are somehow rushing because we are going to be first. People ask, why us? Why now? Why in Britain? I must say, having had the privilege of serving as the Minister responsible for science, that we are first because we have world-leading research in this area. We should be proud of the fact that it is in British labs and British universities that this fundamental research is happening. It was in our country that the structure of DNA was discovered and I had the privilege of going to the Nobel prize ceremony for Robert Edwards, who won the Nobel prize for his work on IVF, which would properly not have passed through the levels of scrutiny we require of research today.

That brings me to my fourth and final point. What is our role in this Chamber today, faced with this very difficult question? We must make a judgment on whether any ethical issues stand in the way of tackling a clear human need. We are not agreeing that any specific programme of treatment should be licensed or should go ahead. We are very fortunate in this country to have a regulatory structure that is different from that in the US. In the US, if Congress voted for such legislation to go ahead, that would be the end of the matter. If we vote for the regulations today, as I hope that we will, we are saying that the HFEA can decide whether or not to license specific uses of mitochondrial DNA donation after it has assessed all the risks. There is that further safeguard. All we are doing is saying we require it to make that assessment and we are not objecting in principle. My sense of the mood of this House is that there are not many people who object in principle.

Drugs (Ultra-rare Diseases)

Cheryl Gillan Excerpts

Tuesday 20th January 2015 Westminster Hall

[Greg Mulholland (Leeds North West) (LD)]

I am delighted to have the opportunity to raise this hugely important issue, which affects a number of children across the country represented here today by a good number of right hon. and hon. Members. Although the debate is scheduled for only half an hour, I will take interventions from Members who wish to raise constituency cases. I am happy to do so because this is an important issue that affects families across the country. At the moment, 88 children in the United Kingdom have Morquio. There are 2,500 people with Duchenne muscular dystrophy, but 50 have a nonsense mutation, which falls into the category of an ultra-rare disease. We are talking about 138 people, 111 of whom are currently on treatment trials with the two drugs that are relevant to this debate.

I am delighted that there was a powerful lobby last week on behalf of the group with the nonsense mutation of Duchenne muscular dystrophy. Families from across the country gathered in Portcullis House and then presented a 24,000-strong petition calling for Translarna. I was with the hon. Member for Blaydon (Mr Anderson), who chairs the all-party group on muscular dystrophy, and the right hon. Member for Chesham and Amersham (Mrs Gillan), who was there with her constituent Archie Hill. We were joined by Liam and Saul, two other boys with the condition. We were all delighted that the hon. Member for Blaydon managed to ask a question at Prime Minister’s Question Time, and the answer gave hope to all those children because the Prime Minister gave a very personal answer comparing his own son to Archie—he had a picture of Archie playing football. The Prime Minister came to speak to us, and he said that he would personally do what he could, which echoes the Minister’s work. I thank the Minister for his personal assistance, which has been extremely helpful. I have met him twice, and I know he is very engaged on this matter, which I appreciate.

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

I am grateful to the hon. Gentleman for giving way. I pay tribute to him for his work on this subject, which is second to none. I also thank him for mentioning my constituent Archie Hill and his parents, who have campaigned tirelessly for Translarna for their son. Does the hon. Gentleman agree that it is important that NHS England takes on board what the Prime Minister said to us, and to the families whom we represented, at Downing street last week by introducing a plan that enables Translarna to be available to those children who could benefit now, rather than waiting for the bureaucracy that is tying the drug up in knots? It could be available for those children now.

[Greg Mulholland]

Absolutely. It is a pleasure to be working on this issue with the right hon. Lady and other right hon. and hon. Members from both sides of the House. This is a personal issue for me, too. My attention was drawn to the issue when Simon and Katy Brown came to see me with their son, Sam, in 2012. Sam was then four, and he is now six. Sam is receiving Vimizim, which is the only drug that clinically works for Morquio. Both drugs have been shown to have a very significant impact on the health of these individuals, changing what they are able to do with their lives, which is crucial.

--- Later in debate ---

[Greg Mulholland]

It is crucial, but that also tallies with the medical evidence. It has been shown that that particular treatment stabilises symptoms, slows deterioration and has a hugely positive impact on quality of life. Children can do more and lead more normal lives; they have more energy and stamina. People with Morquio can live full lives and go on to education and employment, but childhood is their only opportunity to take a drug to slow the effects of the disease.

Duchenne muscular dystrophy, also caused by a mutation, affects young boys specifically. It also has no cure and gets worse over time. It begins by affecting a particular group of muscles and then muscles more widely, leading to difficulty walking, running, jumping, standing up and climbing stairs. Children with Duchenne muscular dystrophy may end up in a wheelchair fairly young, and are certainly predicted to become wheelchair-bound between the ages of eight and 14 as their muscles weaken and they lose their ability to walk.

[Mrs Gillan]

The thing that came home to me was that those children need to access such drugs quickly, while they are still walking. Is that not why the time scale is so urgent? As soon as the child is no longer ambulatory, the drug will not have an effect. That is why we must have a speeded-up timetable and access to personal budgets for such drugs.

[Greg Mulholland]

The right hon. Lady is absolutely right. Without such drugs, boys with Duchenne and children with Morquio are deteriorating now while waiting. They were expecting a decision on 15 December about whether they would be able to access those two drugs.

Translarna changes the natural course of the mutation in Duchenne muscular dystrophy, slows the decline in physical functioning and can therefore also play an important role in reducing the burden that the condition places not only on the boys who have it but on their families. They can do more, lead normal lives and see their boys do normal things with their siblings.

The number of people affected by the nonsense mutation in Duchenne is very small: there are only 50, 34 of whom are currently in the Translarna trial. The number expected to be eligible for Translarna is about 80 to 90 people, so we are not talking about huge numbers. Some of those people, incidentally, are not yet diagnosed; it is believed that that is the largest potential figure. Vimizim is already licensed in various countries: more than 20 European countries have access to it outside clinical trials, including France, Germany, Italy, Denmark and the Czech Republic. Translarna has been given conditional approval by the European Medicines Agency to treat boys with the nonsense mutation. Data gathered from clinical trials of Translarna indicates that the drug, as well as being effective, is safe. Results of the phase 2B trial were encouraging. Boys who received a low dose of Translarna could walk an average of 31 metres farther than boys receiving the placebo. Translarna is already available in Italy, Germany, Spain and France.

The clear message from all the families and organisations representing people with both those conditions is that we cannot wait for the drugs. NHS England has a responsibility, but so does the Department of Health, because the abolition of the previous highly specialised commissioning service led to an unfit-for-purpose process that had to be scrapped in the face of the pre-action. There is a moral and potentially a legal responsibility to find a way to make that decision. We are now already more than a month past the day when those families were expecting a decision that could literally be life-changing for them.

We understand, of course, that NHS England must put in place a proper process, but I urge the Minister to carry on doing what he is doing and the Prime Minister, who has taken a personal interest in the issue, to find a way to allow all those children to access these two drugs, which have been shown to be effective and to have a hugely transformative effect on their lives and those of their families. I will carry on working with the Minister and the two drug companies, but I urge him to listen to this message. We cannot wait 90 days. We need an interim solution, and I hope that we can have that by the end of January, soon as that is. I will carry on working with him and colleagues throughout the House until we get that news.

[The Parliamentary Under-Secretary of State for Business, Innovation and Skills (George Freeman)]

I congratulate the hon. Member for Leeds North West (Greg Mulholland) on his tireless work on this issue, and colleagues across the House, including the hon. Member for Blaydon (Mr Anderson), my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) and others here today.

I thank the hon. Member for Leeds North West for his kind words about the work that I have been trying to do for him, and about the Prime Minister’s signal of support. The issues are incredibly complex and do not lend themselves to an easy waving of a ministerial wand, but we are committed to finding a solution.

The hon. Gentleman has been tireless in his support of one of his constituents, six-year-old Sam Brown from Otley, who has the very rare Morquio syndrome. A new treatment is now available called Vimizim, from which Sam has already benefited as part of a clinical trial. I wish to state my support for Sam and his family, and for all those who suffer from the disease, including those in the trial who have access to the drug when others currently do not. I also pay tribute to the hon. Gentleman’s support for the family of another young boy, Archie, who has Duchenne muscular dystrophy, a very rare form of muscular dystrophy that affects only boys. Archie’s family want him to be treated with a new medicine, Translarna.

I will say a little about the background to the diseases and what we are trying to do about them. Both conditions are very rare—there are about 80 children living with Morquio syndrome in England, and about 140 boys with Duchenne muscular dystrophy—so we are talking about a very small number of children with those life-limiting conditions. However, rare diseases are not rare: there are between 5,000 and 10,000 known types of rare disease, and an estimated one in 17 people will be affected by a rare disease in their lifetime, amounting to some 3 million suffers in the UK alone.

The truth is that the more we know about the human genome and the behaviour of genes in disease development, the more we understand its complexity. In cancer particularly, we know that the tumour itself mutates at different stages of the disease. The more we know about genetics, the more we discover that diseases that we thought yesterday were one disease in fact break down into different bundles of rare disease. New knowledge, technology and advances in biomedicine are a wonderful thing, but that does not detract from the fact that the NHS operates with finite resources and that difficult funding decisions must be made daily.

I was delighted to meet Sam’s mother and Archie’s family early in December, along with the hon. Gentleman and representatives of the Society for Mucopolysaccharide Diseases, to whose work I pay tribute, and of the Muscular Dystrophy Campaign. As the hon. Gentleman mentioned, we had a number of meetings over the Christmas period. I was delighted to meet patient groups and the manufacturers of Vimizim and ataluren just before Christmas. In that meeting, I asked the patient groups and companies to set out their proposals, which they have now done. I am grateful to them, and I have passed on that information to NHS England.

This morning, I met NHS England’s clinical director of specialised services, James Palmer, and its director of specialised commissioning, Richard Jeavons, and I will convene a further meeting shortly to pursue the issues that the hon. Gentleman has raised this morning. Since he first made me aware of this issue, I have been absolutely determined to bring as much ministerial focus to it as I can. I am also grateful for his acknowledgement of the Prime Minister’s support. The Prime Minister and I are both determined to ensure, without compromising due process, that the case for these children and their families is properly heard, and that the system works as it is supposed to.

I am acutely aware of the urgency behind the hon. Gentleman’s comments today and that is why I have taken the unusual step of trying to broker an agreement on what we might do to help children affected by these diseases, but I must stress that it is for NHS England, which in the end is the responsible commissioner, to make any decisions about making funding available so that the treatments are available on the NHS. It will act on the best clinical advice from the UK’s specialist body, the National Institute for Health and Care Excellence.

I will say a little more about the options for accelerating that process in a moment, but first I will talk about our approach to improving access to treatments for rare diseases generally, because I know that this debate is being watched closely by others who have an interest in a number of other drugs and conditions, in the commissioning process, and in NHS England’s prioritisation and decision-making framework. In setting the scene, I remind right hon. and hon. Members of the pressures that the NHS faces, particularly on budgets for rare diseases. The emergence of new treatments, the increasing personalisation of medicines, the end of the one-size-fits-all model and the possibilities offered by the rapid advances that we are making in genomic medicine and diagnosis are all putting immense pressure on NHS England’s resources for the commissioning of services for rare conditions.

Ideally, of course, we would want to fund all the treatments that are shown to benefit patients in any way, but we have to make difficult decisions about how we spend the money that we have available. That is why we have put clinicians in charge of the process, so that they can make decisions based on patient benefit and on the best health economic assessments that we can make. The painful truth is that with finite resources, when we make a decision in one case to accept a drug, we will make a decision elsewhere to reject, and we have a duty to all to ensure that we make those decisions fairly.

For people with rare conditions, their families, carers and clinicians, having access to the latest and most effective treatments is obviously critical, and I am absolutely committed to ensuring that patients with rare diseases have access to the latest and most effective treatments that represent value to the NHS and the taxpayer, as well as delivering benefits to patients. That is why we recently introduced the early access to medicines scheme, which aims to give patients with life-threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorisation or licence where there is clear unmet medical need. I am delighted that initial products have been brought forward in the last six months under that scheme.

More generally, our strategy for life sciences sets out an ambitious longer-term plan to improve the wider environment for health and life sciences companies in this country. Recently, I launched a major review of the landscape in the UK for bringing innovative medicines and medical technologies to patients much more quickly, and I will soon announce the chair, the terms of reference, the scope and the timetable of that review.

We are not in any way complacent. The truth is that the challenges in this sector, which are being driven by the pace of technological change, demand that in our policy-making framework, in the Department of Health and in NHS England, we adapt the way in which we handle these processes. Because of their rarity and the low patient populations, services for rare conditions are directly commissioned nationally by NHS England as specialised services. They account for approximately 14% of the total NHS budget and represent spending of about £14 billion a year. Both Morquio syndrome and Duchenne muscular dystrophy fall within these national specialist commissioning arrangements.

As right hon. and hon. Members are aware, NHS England is considering draft clinical commissioning policies for both Vimizim and ataluren. I understand that they are being considered as part of NHS England’s wider prioritisation process for funding in 2015-16. NHS England’s clinical priorities advisory group formulates recommendations on the commissioning of new treatments for rare diseases in England. It is made up of clinicians, patient representatives and commissioners of health services.

In summer 2014, a decision-making aid for the prioritisation of new interventions and treatments was developed by a partnership of stakeholders, including more than 250 patient representatives. It was due to be used for the first time in early December 2014, but on 28 November 2014 NHS England decided to postpone its introduction, in response to concerns that some patients affected by rare diseases might be disadvantaged by its application. The legal process about that must now run its course. I understand that NHS England is, rightly, reviewing the appropriate approach to prioritising new treatments and interventions within specialised commissioning in response to those concerns. A 90-day consultation on the prioritisation framework and decision-making process for commissioning decisions on new treatments will be launched by NHS England shortly. This morning, I again raised the importance and urgency of that consultation process.

I know that patients and their families are understandably concerned that it may take a long time for a decision to be made by NHS England on whether it will fund the drugs, and that in the interim the children affected will not receive them. However, I am delighted to say that NHS England has assured me that the consultation will have no impact on the decision-making timetable for commissioning NHS services from April 2015 onwards. In addition, it has assured me that existing treatments will continue to be commissioned, ensuring that support for patients is maintained. NHS England understands that the manufacturer, Bio Marin, is providing Vimizim under an expanded access arrangement to those patients who are on the clinical trial until an NHS England policy decision has been made.

Since April 2013, NICE, which is responsible for the evaluation of selected high-cost low-volume drugs under its highly specialised technologies programme, has been playing an important role in ensuring that commissioning decisions are based on a robust and thorough assessment of the available evidence. NICE has recently been asked to evaluate Vimazim under this programme, and it is also considering whether to develop guidance on Translarna. That is a very positive step, and I look forward to receiving NICE’s proposals on future topics that will be considered. I know that NICE will also be keen to learn lessons from its recent experiences with the new highly specialised technologies process, to make that process as efficient and effective as possible.

For my part, I am absolutely determined to continue playing the active role that I have taken on in the last few months, to drive this process and give it the focus that it requires. I am delighted to have confirmed with NHS England that it will continue to meet the treatment costs. I have signalled, and will continue to signal, to NICE, without compromising its processes, the strength of the case that has been made by Members and patient groups to put Translarna on the list, and to consider whether it can expedite its process in any way, but I do not want to compromise that process in any way. I will also ask NICE to ensure that it uses its review of the experience of the HST programme to explore how we can speed up both this process and others in due course.

Finally, I am committed to continuing to work with the companies to see whether I might be able to help broker some kind of planning arrangement that might encourage NICE to make the decision that I know everyone in Westminster Hall today would like to hear.

[Mrs Gillan]

I am grateful to the Minister and I congratulate him on taking up the cudgels on this issue and trying to move it forward. The Muscular Dystrophy Campaign has asked whether the individual funding requests from patients would be a route to secure access to Translarna while the Minister is waiting for due process to take its course, because I am afraid that muscular dystrophy waits for no man and no process.

[George Freeman]

I understand; my right hon. Friend makes an important point. In fact, I raised it this morning in my meeting with NHS England. My understanding is that NHS England will continue to consider individual applications for Translarna through its individual funding request process from patients who may be exceptional. However, my understanding is that such cases really do have to be exceptional. In reality, the members of the whole group that we are considering are more or less suffering from the same condition and therefore they may not qualify under those criteria. I merely share that with my right hon. Friend because I myself raised that point this morning with NHS England.

Oral Answers to Questions

Cheryl Gillan Excerpts

Tuesday 13th January 2015 Commons Chamber

[Mr Speaker]

Order. Let me explain to the Minister, which I have done several times, that we have a lot of business to get through. We need answers to questions and no more than that.

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

Last month, I contacted one of my excellent GPs in Chesham concerning the waiting time for one of my constituents. In his response, he reminded me that Buckinghamshire patients receive less funding per head than almost anywhere in the country. What can be done to address that inequality, so that my constituents can benefit from the same level of funding for services and treatment enjoyed by other parts of the country?

[Dr Poulter]

As my right hon. Friend will be aware, the funding formula is now reviewed regularly. That is done independently and is free from political interference. Looking at areas such as hers, where there are a lot of frail and elderly patients, is now more paramount in the funding formula. In the future, I am sure that the funding formula will better reflect local health care needs.

Oral Answers to Questions

Cheryl Gillan Excerpts

Tuesday 25th November 2014 Commons Chamber

[Norman Lamb]

Inexplicably, when the last Labour Government introduced access and waiting time standards, they left out mental health. That was an extraordinary decision, and it drives where the money goes. The introduction of mental health waiting time standards next year, for the first time ever, will help to achieve equality for mental health. We have also published a vision of the next five years explaining how we will secure genuine equality for mental health, which is something that the last Labour Government did not achieve.

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

The Minister will know that the statutory guidance of the adult autism strategy in England is the keystone of the provision of services under the Autism Act 2009. The updating of that guidance is now imminent, and concern has been expressed to me about the draft wording produced by the Department. Can the Minister assure me that the Department does not intend to weaken the requirements for local authorities to provide services for people with autism and their families?

[Norman Lamb]

I am delighted that my right hon. Friend has become chair of the all-party parliamentary group on autism. She has fought for many years to secure a fair deal for people with autism. I am grateful to her for alerting me to the issue that she has raised, and I shall be sure to look at the guidance. It is absolutely not the intention to water down guidance for local authorities in any way.

Adult Autism Strategy

Cheryl Gillan Excerpts

Wednesday 5th March 2014 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Ms Clark. As you know, I always approve of a woman being in the Chair. It is a great privilege to open this debate today. I am pleased to see so many colleagues from both sides of the House joining the debate, which reflects the importance of the subject.

I understand that the Department of Health plans to publish its revised version of the adult autism strategy for England on 2 April, coinciding with world autism awareness day. Today’s debate is therefore timely for us to identify for the Minister what we think and what our constituents have told us are the key priorities for the revision of the strategy. I look forward to hearing from the Minister about the Government’s plans, particularly those to take forward the actions that people require, because we need support for the estimated 460,000 adults with autism in this country.

It is just over four years since my private Member’s Bill on autism became the Autism Act 2009. I still thank colleagues on both sides of the House for making that possible. The passing of the Act was an important landmark in the battle to improve the lives of adults with autism in England. I want to thank everyone, including the people who at first opposed the Bill but who came round to my way of thinking, because they made the Act the first disability-specific legislation ever to be passed in this House.

As we all know, autism is a lifelong developmental disability that affects how a person communicates and makes sense of the world around them. It is a spectrum condition, meaning that it affects people in different ways, making awareness of the diagnosis even more important.

Back in the ’90s, my colleague, Angela Browning, now Baroness Browning—some hon. Members will remember her—made me only too well aware of what happens to adults with autism, particularly if they are being isolated or ignored. Over the years, awareness grew of the needs of adults and children with autism, but even by 2009, there was still no meaningful recognition at Government level of the challenges faced by adults.

[Robert Halfon (Harlow) (Con)]

I congratulate my right hon. Friend on securing this debate on a subject that is incredibly important. Is she aware that 85% of adults with autism in the UK are not in full-time employment? Translating that to my own area, Essex, that is around 7,000 people. The Government have set up Disability Confident, which helps people with disabilities to get into work, but it does not focus on people with autism. My local autism charity—

--- Later in debate ---

[Robert Halfon]

My local autism charity, Parents and Children Together for Autism, has set up a pilot apprenticeship scheme focusing on people with autism. Does my right hon. Friend agree that that should be rolled out across the country?

[Mrs Gillan]

I congratulate my hon. Friend’s local charity on setting up that apprenticeship scheme. That is important. When I started looking at autism all those years ago, one of the interesting things I realised was how valuable people on the spectrum can be. They can make a fantastic contribution to businesses right across the board. Apprenticeship schemes should be looked at quite carefully by the Government. If there is an example in my hon. Friend’s constituency, I am sure that the Minister will take it on board and perhaps even arrange a visit to see how it operates.

Adults with autism were still being overlooked by local services back in 2009. They were falling through the gap between learning disability and mental health services, because no one had responsibility for taking a lead locally to ensure that appropriate services and support were being developed for adults with autism.

The diagnosis can become more complex as a person gets older and often needs a referral to a specialist centre, for which out-of-area contracts are often needed. Some local authorities are doing that, but some, I am afraid, are not. That is why the Autism Act was so important. As a piece of disability-specific legislation, it set a legislative framework for that gap to be closed and for the responsibility to improve support for adults with autism to cover every local area.

[Tim Loughton (East Worthing and Shoreham) (Con)]

I congratulate my right hon. Friend. I remember well the Autism Act and the many hoops that she needed to go through to get it passed. I am sure that she is aware of the findings from the National Autistic Society, which said that just one in three people said that, in their experience, social workers had a good understanding of autism. There is a big cliff edge between children and adults, with services completely changing or becoming non-existent when someone reaches 18. Does she agree that, given the big emphasis now being placed on the better training of social workers, particularly regarding vulnerable children, we need to do a lot better with training social workers to deal with adults as well, in terms of the sensitivities and requirements of people with autism?

[Mrs Gillan]

I agree entirely with my hon. Friend. When I come to talk about the actions I want the Minister to take, I will ask him to ensure that local community care assessors have autism training.

[Kate Green (Stretford and Urmston) (Lab)]

I congratulate the right hon. Lady on securing this debate. I apologise that I will not be able to stay for all of it, but I am pleased that she secured it this morning. I agree with her that it has been a good product of the 2009 Act, for which she rightly claims credit, that local authorities now have to give special consideration to meeting the needs of adults with autism. As many local authorities have now raised their threshold for support to substantial and critical levels of need, does the right hon. Lady share my concern that that may begin to exclude some of those adults?

[Mrs Gillan]

That is a point to be taken on board. There is variation across the country that we are all aware of. The Minister will have noted the hon. Lady’s remarks, and it is important that we try to get more standardisation across the country.

The Act guaranteed the introduction of the first-ever adult autism strategy, setting out how adults with autism should be better supported. It was underpinned by guidance and placed duties on local authorities and the national health service to take action. The strategy has been well supported by the National Autistic Society; I think everyone in the Chamber and beyond would pay tribute to the NAS, which does the most amazing work right across the board. Its “Push for Action” campaign has captured people’s imagination. It calls for urgent action to end the wait for the everyday support that people with autism need.

[Annette Brooke (Mid Dorset and North Poole) (LD)]

I was delighted to support my right hon. Friend’s Autism Act, which was an enormous step forward, and I congratulate her on securing this debate, because it is exactly a push for action on what we have achieved so far.

I want to draw my right hon. Friend’s attention to a point raised by a constituent of mine who said:

“I have a bright son who is now 21 and spends every day isolated at home as there is no support or help available for him. I would like him to find a job and make friends but he will need help”.

When we get down to those individual cases and almost the waste of lives compared with what could be done, I certainly hope that we can secure something for this next push.

[Mrs Gillan]

I am grateful for that intervention. This place is about making legislation, both primary and secondary, but for each and every one of us as MPs, it is those individual cases that strike home to our hearts. It is a valuable role for an MP to bring individual cases to the attention of the House, as the hon. Lady has done, because it makes both our laws and their implementation better. I think that we will all have stories of families and individuals in our constituencies who need more help, and there is nothing more moving than a parent coming to plead for help for their child.

[Robert Halfon]

The NAS has highlighted that only 10% of adults with autism receive employment support but 53% would like to receive it. Does my right hon. Friend agree that we need to focus on that issue?

[Mrs Gillan]

Yes. I rely a great deal on statistics from the NAS, which does detailed work in this area. It is still a crying shame that we have wasted capacity and wasted lives in this area, and we should not stand idly by and let that happen.

Having said that, I am gratified by what has been achieved so far in improving the support at the front line. Just for starters, almost all areas now have someone who is responsible for improving services for adults with autism. It might not seem much, but that development alone has been a mighty step forward. I will also highlight some progress in my own constituency of Chesham and Amersham where there are two clinical commissioning groups and they have agreed that one of them will take the lead on autism issues for the whole county, identifying within the two CCGs a GP who will take work on autism forward. That is the sort of activity that I want to see being replicated across the country.

Elsewhere, I know that some excellent and innovative practice has emerged on issues such as training and diagnosis. Sadly, however, as I am sure other colleagues will testify, progress is still patchy and many areas have not made progress as rapidly as we had all hoped for when the Act was passed.

Research by the NAS shows that, four years on from the passage of the Act, many adults with autism are still waiting—unjustly, in my view—for the support they need. Seventy per cent of adults with autism who responded to the recent NAS survey said they are not receiving the help they need from social services, and more than a third of respondents said that they needed help with simply washing and dressing. In addition, two thirds of respondents said they needed help to prepare a meal and 83% said that they needed support to pay a bill or to deal with letters. Those are things that we all do every day of the week, but in the majority of cases adults with autism are unable to get help from their local council to deal with them.

There is also a lack of clarification between low-level and high-level support. Low-level support services are often right for individuals, as they can prevent them from developing more complex problems and therefore can be almost disproportionately cost-effective. My grandmother used to have a saying about such situations: “A stitch in time saves nine.” That is exactly the principle that we should apply in this area.

The impact of such a lack of support is quite clear. The NAS research indicates that a third of adults with autism have developed a severe mental health problem because they lack support. Of course, the statistics vary slightly, but one statistic I will cite is that just 15% of adults with autism are currently in full-time work. We must urge our local authorities to press on, and the necessary support and impetus must come from Government.

The good news is that we are to have a refreshed strategy—it is the Heineken moment for the Minister. I will turn now to the priorities for that refreshed strategy.

[Tim Loughton]

Before my right hon. Friend downs the Heineken, may I take her back to the alarming statistic she just cited about the number of people with autism in full-time employment? Does she agree that there is an onus on businesses to do more, as many of the smarter businesses have done in the past? Those businesses particularly took on board the sensitivities and requirements of people with autism, and considered how they might be encouraged to apply for a job in the first place; many people with autism never even get to that hurdle. Not surprisingly, many of those businesses turned out to be rather good employers, and we need some rather more enlightened employment practices from some more of our businesses.

--- Later in debate ---

[Mrs Gillan]

I agree entirely. I am amazed by the intellect and the unique and fantastic capabilities of some people on the autism spectrum. Many of them have the capability to repeat jobs that demand high intellect, such as the regular quality-checking of components. There are some really valuable people on the spectrum whose skills are being completely wasted, and if there is some way in which we can mirror the apprenticeship scheme and encourage employers to hire them and spread the word that they are the people they should be looking at, although they may require some rightly deserved special attention, that would be useful.

To start with, we must establish base camp. Therefore, I particularly want to hear some assurances from the Minister today that the core elements of the original strategy and statutory guidance will not be lost once the revised strategy is in place. Local authorities and the NHS are at differing points in implementing the current strategy. The strategy has set them on the right path to ensure that the needs of adults with autism are properly accounted for in local planning and commissioning, because it clearly sets out that there must be local leadership on autism to help bridge the gaps in local services and it also makes it clear that every area must have a pathway to diagnosis, as well as appropriately trained staff, which was the point made by my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton).

We must make sure that the progress that has already been made on those issues is recognised as the strategy is revised. I need to congratulate those areas that have taken forward all the key actions that were originally in the strategy, and I hope that the Minister will ensure that those areas that are yet to make progress on the fundamental aspects of the original strategy are clear that that is not acceptable and that they need to take immediate action.

Can the Minister reassure me and the House that the revised strategy will restate the importance of every local area guaranteeing to take the following actions, if they have not already done so? They are: first, appointing a local autism lead; secondly, establishing a local autism partnership board; thirdly, ensuring that autism is included in local data collection and the joint strategic needs assessment; fourthly, developing a local plan; fifthly, ensuring that there is a local pathway to diagnosis; sixthly, ensuring that autism is included in standard equality and diversity training for all staff across health and social care; and lastly, making sure that the community care assessors in the area have autism training. Of course, the restatement of those core actions will not be enough to ensure that change is happening at a local level, but the Government should set a timetable to check that those actions have been carried out across every area of this country, preferably by the end of this year.

I know that the Minister will say “What of the money that is available?” One of the key challenges that I and other colleagues regularly hear about is the financial constraints that face professionals when they seek to develop new and innovative local services. Gaining funding approval has been especially problematic, as there are few evidence-based models of good practice on which to base such approval, even though financial modelling has shown that these types of services can and do save money; it is my grandmother’s old adage again. Investment in new and dynamic service models will not only help local authorities to improve the services that are currently available to adults with autism, but will help to develop an understanding of the best way to deliver services and highlight areas of best practice.

I, and many other people, also place high importance on data capture between health, education and social services, so that those services have a better understanding of the number of children who will move into adult services. Capturing that data is not rocket science and it will mean that the provision of transition services can be better planned for and budgeted for. When I look at this area, it always amazes me that there is no co-ordination of the transition from childhood to adulthood, and people just fall through the gap.

I know that the Minister has agreed to consider the proposal from the NAS for an innovation fund as part of the review of the strategy, and when he responds to this debate I look forward to hearing an update from him about that proposal. I hope that he will be able to respond positively to what, in one way, is an ambitious proposal but, in another way, is very modest.

In conclusion, each and every person deserves the best possible chance to make the most of their talents and fulfil their potential, including people with autism. As illustrated by various reports on autism, including the National Audit Office’s report, with which the Minister is familiar, we are not only wasting large amounts of taxpayers’ money, but not providing adequate support to people with autism, we are also wasting human talent and lives.

The Autism Act has, with a lot of help from colleagues, been a catalyst for change, but more work needs to be done. I urge the Minister to make sure that he seizes this opportunity presented by the refresher to take forward ambitious actions, such as increased investment, which will help ensure that adults with autism throughout the country can be supported to live the life they choose and the life they deserve.

[Katy Clark (in the Chair)]

I remind hon. Members that interventions should be brief.

--- Later in debate ---

[Mr Buckland]

My hon. Friend, of course, has constituency experience with the Gary McKinnon case of how we can reach a dreadful situation where, because of a complete misunderstanding of the condition, serious consequences can flow. He makes an important point about Atos, and we have seen the difficulties that it has got itself into. It is unacceptable that we have a system that does not properly recognise these conditions. Frankly, it is a scandal. We can do far better than that, not only for adults with Asperger’s but for the range of invisible conditions—I do not call them hidden conditions, because the word “hidden” has connotations of its own—right through the gamut of mental health. We do not have a grip of that, either in the benefits system or with some other agencies.

[Mrs Gillan]

I pay tribute to my hon. Friend for his chairmanship of the all-party group. He has been driving forward progress in this area in a superb fashion. In my experience, the issue he is discussing also manifests itself in all sorts of strange areas. If a local authority or housing association dealing with an adult with Asperger’s has no idea of that individual’s sensitivities, it can positively harm that individual and others surrounding them, leading to immeasurable costs to the taxpayer and in the damage done to the individual.

[Mr Buckland]

I entirely agree. It is time that we recognise that conditions such as autism are particular disabilities that open a gateway to specialised housing. Unless we deal with that, we will carry on down the failed route of institutionalisation. We can see the logical conclusion of that in Winterbourne View and other serious examples. The Minister has a passion to deal with these issues, and I know he agrees that independent, supported living in properly tailored, properly built housing—it does not yet exist in any great measure—is what is needed for adults with autism if we are to avoid the tragedy that I and other hon. Members see week in, week out, whether we are canvassing or in surgery. We see young people sitting upstairs in the family home, without a job and they do not know what to do. They have no support, and their families are at their wit’s end in knowing what to do. We have to do better than that, and they deserve better.

On interface with agencies—I was talking about criminal justice—in many police areas, we now have autism alert cards. That system works well in Wiltshire, which is the police force area in which I live. We relaunched our autism alert card only last week. It is a simple thing: a bit of plastic with next of kin details on it. Importantly, the card tells the reader that the person carrying it has autism. That should trigger a series of events happening and make the police aware that autism is a factor. If various support services and care services are needed, they can be brought into the package and the family and the support network can also be informed about the incident or problem that the adult is having. Those simple measures can make a great difference.

--- Later in debate ---

[The Minister of State, Department of Health (Norman Lamb)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate, but more particularly on her brilliant work over the years to secure the 2009 Act and the strategy that followed it. I know from my ministerial role that she continues to show an interest and pursue the case for change, and that is incredibly valuable.

Ministers are normally under pressure to respond to requests for meetings, but although I have not had one today, I would like to offer my right hon. Friend the chance to come to the Department, before we reach the final point of the refreshed, revised strategy, to discuss where we are going with it. My hon. Friend the Member for South Swindon (Mr Buckland) spoke passionately as well. I was with him yesterday at a meeting of his all-party group on autism, and he should be part of the discussion. Other Members are welcome too—that would be very valuable.

[Mrs Gillan]

rose—

[Mr Buckland]

rose—

[Norman Lamb]

I will give way to both colleagues, but first to my right hon. Friend the Member for Chesham and Amersham.

[Mrs Gillan]

I thank the Minister for his generous offer. He took the thought out of my head, because I was going to ask whether my hon. Friend the Member for South Swindon (Mr Buckland) could accompany me, alongside someone from the National Autistic Society. That offer will be taken up, and communities across the country will appreciate that. Even if the Minister is unable to meet all the demands we have set out today, it is important that he can set out a path forward, so that we can achieve what we have been asking for across the board, so I thank him for his offer.

--- Later in debate ---

[Norman Lamb]

The hon. Gentleman makes a good point. I was going to come on to give an example of that. Sadly, we have also heard from many people with autism, and their families and carers, that things have not yet changed enough, or at all, for them. Gaps in provision or waits for diagnostic services continue to be reported. As my hon. Friend the Member for South Swindon made clear, diagnosis is the start of what can then happen; it is a condition precedent to an improvement in someone’s life, and is of course not enough in itself. Many people have told us that they have skills to offer employers that they cannot use. That is totally frustrating for them, and a waste for the individual and for the economy, as my right hon. Friend the Member for Chesham and Amersham made clear.

[Mrs Gillan]

The Minister has slightly moved on from the point that I wanted to make, but I will make it nevertheless. Will he also look at an initiative that the NAS and I took in my constituency with some parents of children who have autism? I brought them together with the clinical commissioning group in a non-crisis atmosphere, because most of the contact with parents and families with autism happens when they are in crisis. We held a meeting in my office in a non-crisis environment and it was helpful to have an exchange in a calm atmosphere about the issues and problems faced by those individuals and families. They were able to put those across to the CCG and the local authority, which meant that the professionals were then so much better equipped to know what such families and individuals are facing, and to give them the help and assistance that they require. Will the Minister also look at that as a model to roll out across the country?

[Norman Lamb]

I would. Bringing people with autism and people who use services together with those who are commissioning the services is a necessary condition for any good commissioning, but far too often it does not happen. As my right hon. Friend has demonstrated, there is a role for us here: we can act as local champions to bring people together and put pressure on institutions to change attitudes. I very much share that view.

We are in the final period of finalising the update to the strategy and are giving active consideration to ideas that others have contributed, such as the innovation fund, which my right hon. Friend mentioned, to help develop good practice, and an autism awareness scheme to help local volunteers and community groups. Autism should not be seen as an add-on to services or work programmes, and with well over half a million people on the autism spectrum, everyday services will already be seeing or in contact with many people who have autism. Thinking about and engaging with those people more effectively and making reasonable adjustments or adaptations to existing services will lead to better outcomes for people and a better use of public resources, as other hon. Members have said.

Monday was NHS change day. I was made aware, via Twitter, of a short video about a doctor’s pledge to ensure that instructions given to patients are clear and not ambiguous. The video followed a girl called Lucy who has autism. After a consultation in a room in a hospital, she was told to wait outside A and E, and so went outside the building, because she had taken the instruction literally, and sat waiting for hours outside in the cold in the car park, left entirely on her own. I encourage hon. Members to watch it: it lasts about 30 seconds and was distributed via Twitter. That simple and straightforward pledge, made by a doctor who recognised that there had been a complete failure by his service, will help to raise awareness within the service and increase understanding of autism. The hon. Member for Stretford and Urmston (Kate Green) made the point that this is not just a matter for the NHS; other organisations such as banks and other financial institutions have a responsibility to see how they need to raise awareness among their staff.

Many of the changes under way in public services, such as increased personalisation and choice for individuals, are essential to giving people with autism the right kind of support. Support for people with autism may not require huge budgets to achieve improvements, and much can be achieved with a degree of creativity, flexibility and determination.

This issue is relevant not only to health and care, however. Again, we can draw a comparison with the dementia situation. The Prime Minister’s challenge on dementia is about how not only health and care services but society need to change, and how we need to raise awareness across society. The same applies for people on the autism spectrum. It is about changing people’s lives, both where they live and where they work. We know that so much more could be done to promote autism awareness, but our society is becoming more aware of autism. We hear about local schemes to make parts of the community more accessible and welcoming to people with autism. For example, as was referred to earlier, cinema screenings are being made autism-friendly by simple adjustments such as having the lights on low and the volume turned down.

Services based around low-level interpersonal support, such as buddying schemes, have enabled adults with autism—including people who do not qualify for support from their local authorities—to participate in different social and leisure activities and have promoted social inclusion. The example of the special showing of a musical in London is a good demonstration of an organisation prepared to go the extra mile to make life enjoyable for people in those circumstances. Exactly the same can be done for adults as for children, as my hon. Friend the Member for South Swindon said.

The Care Bill also puts a duty on local authorities to develop preventive services for people within communities. The shadow Minister and I have been devoting a lot of our time to the Care Bill. It is great and groundbreaking legislation that puts a focus on individuals’ well-being and happiness. If we can change the way in which organisations such as local authorities behave towards people with care and support needs, so as to focus on their well-being and not the needs of the institution, we can effect real change.

The Children and Families Bill will bring significant improvements to the transition of young people with autism from school, through college and into adult life—a point made by the shadow Minister. It will introduce education, health and care plans for people from nought to 25, which will put greater emphasis on long-term outcomes for young people. We know that caring for someone with autism can be extremely rewarding, but it can also be incredibly challenging, both emotionally and financially. The changes to carers’ assessments that will be introduced if the Care Bill becomes law will ensure that many more carers can get support.

It is also important to improve training on autism for front-line public service staff, a point raised several times in our debate. Since 2010 we have worked with a range of organisations to produce a comprehensive set of resources for staff in the health and care sector. Health Education England has a role to play, along with initiatives from the royal colleges, such as the Royal College of General Practitioners, whose adoption of autism as a clinical priority from April this year is very much to be welcomed. The regulations to support the Care Bill will also require community care assessors to be suitably trained—again, an issue raised in our debate. Having autism-aware police officers, courts and probation services can make a great difference. The existing statutory guidance made it clear that autism training should be available to all staff working in health and social care.

To plan effectively, local authorities need access to data on numbers and needs that are as comprehensive as possible. From April this year, as an outcome of the zero-based review of adult social care data, they will have to record a person’s primary reason for support and any health conditions that person may have, including autism. That provides a basis for possible future measures on autism in the adult social care outcomes framework.

A key challenge for many older adults with autism is that they will have had significant support from their families, but as families age that becomes less possible. We are considering how to build on the recent NAS report that followed work by the House of Lords autism and ageing commission.

As we have heard, most people with autism want to work, and have skills and talents that would be incredibly useful in the workplace. The policy paper “The disability and health employment strategy: the discussion so far” outlines a more personalised and tailored approach to employment support for disabled people, including people with autism. As well as challenging negative behaviours and attitudes, the Disability Confident campaign launched last year by the Prime Minister is designed to help employers who are unsure about the benefits of employing disabled people.

Adults with autism are entitled to benefit from all the Government’s wider initiatives to get working-age people into employment. The Department for Work and Pensions is aware that more can be done to help people with autism make the most of those programmes and of themselves. Only this week, the DWP held an event with my Department and the NAS, for people on the spectrum and for employers, to improve people’s experiences in applying for jobs at the jobcentre and with employers.

We are only at the beginning of the journey to improve all aspects of the lives of people with autism, including when they are seeking employment or are in education, as well as the support they get in health and social care. We need to continue with concerted action and commitment both nationally and locally to make a difference. The update of the 2010 strategy will mark the next step in that journey, but there is still a long way to go.

Dermatology Funding

Cheryl Gillan Excerpts

Wednesday 4th December 2013 Westminster Hall

[Sir Edward Leigh (Gainsborough) (Con)]

It is a pleasure to serve under your chairmanship, Mr Turner. I am grateful for this opportunity to debate issues relating to the provision of dermatology in the NHS. This area has received little parliamentary attention over the years, given the considerable morbidity and mortality for which skin disease is responsible. Indeed, I think I am right in saying that this is the first debate in the House of Commons in several years on dermatology and how it is treated in the NHS.

I should declare an interest, because we are always supposed to. I have a skin condition called rosacea. It is not that serious; I take antibiotics every day and it is controllable, but it has, of course, led me to take an interest in this subject.

In preparing for this debate, I consulted widely among the different interests in skin disease, and I am grateful for the insights that I was given. It is noteworthy that the same themes emerged from all quarters. Skin disease is extensive and has a great impact. It results in profound psychological consequences for many, especially for those with severe variants of conditions. It is under-treated in the NHS, and there are commissioning issues that relate partly to dermatology’s continuing to be something of a Cinderella disease. Talking to people, I heard the expression “Cinderella disease” time and again.

Most crucially, there is wholly inadequate training, notably among general practitioners, to enable doctors to handle the dermatology cases that will come their way in day-to-day practice. Why is this? There is a view that dermatology does not matter and that it does not kill. This is both complacent and wrong. Many skin diseases have horrendous effects, even when they are not fatal. Skin cancer is a major killer, and there would be benefits from renewed focus on this disease, both to help people avoid it in the first place and to identify and treat it quickly where it occurs.

The statistics on the burden of skin disease are eye-popping. Some 54% of the United Kingdom population experience a skin condition in any 12-month period. Of those, 14% seek medical advice, usually from a doctor or nurse in the community. Some skin conditions will be trivial, but many are not. Skin conditions are the most frequent reason for people to consult their GP with a new problem. Some 24% of the population visit their GP with a skin problem each year.

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

I congratulate my hon. Friend on obtaining a debate on a subject that has not been discussed for a long time. I have looked at facts and figures on dermatology services in my constituency. Would it surprise him to hear that, in the first six months of the year, the trust’s dermatology department had 501 day cases, 4,160 new out-patient appointments and 7,951 follow-up out-patient appointments, and undertook more than 3,292 out-patient procedures? Does not that show the demand in the system for dermatological services?

--- Later in debate ---

[Sir Edward Leigh]

In a moment, I will address the fact that skin diseases can have fatal consequences. As GPs often do not have adequate training, they are not able to spot conditions that can be very dangerous.

Training is important. In a 2008 survey of final-year medical students, only 52% of 449 respondents said that they felt they had the necessary skills to manage skin conditions. A lack of education and training may lead to fatal errors, and I stress that point because skin disease is not only about psychological damage. Skin lesions mistakenly taken to be benign can lead to cancer. Conversely, inappropriate referrals to secondary care can be costly and are blocking up big parts of secondary care. As awareness of litigation increases in the NHS, GPs are, unsurprisingly, less and less willing to take risks, so they refer more and more patients to secondary care. I understand that the general hospital in Lincolnshire—this echoes the point raised by my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan)—has seen a 26% rise in dermatology referrals for secondary care in the past year, and it is not alone.

The exploding incidence of skin cancer, an ageing population and side effects from new potent drugs are all driving referral rates. It has been guesstimated that there are 100,000 cases of skin cancer a year in the UK, but the number is not known for sure because the NHS does not collect figures for cancers that are not melanomas. Work this year suggests that the number may be nearer to 700,000; that is what dermatologists tell me, because they are dealing with such a volume of cases, day by day.

Studies show that the skill of GPs in diagnosing skin lesions needs improvement, and other studies raise concerns about the standard of skin surgery offered in primary care. In 2012, the Royal College of General Practitioners updated its curriculum statement on the care of people with skin problems. The statement goes a long way towards recognising dermatology as a key component of a GP’s training. The statement sets out a number of expected key competences within the field, but crucially, dermatology remains an optional component. For undergraduates, the British Association of Dermatologists recommends a two-week full-time attachment to a dermatology unit, with a realistic assessment at the end of the course. The association thinks that dermatology should also be taught when undergraduates work with general practitioners in the community. When trainee GPs are undertaking their two-year hospital placement, a six-month post in dermatology alone, in a combined post such as dermatology and general medicine, or in a combined minor specialty rotation would go a long way towards helping trainee GPs to take a special interest in dermatology, which is what we need.

The GP training period is likely to be lengthened by 12 months. I urge all interested parties—Health Education England, the royal colleges, the General Medical Council and the ultimate employer, NHS England—to use half or all of that extra time on a proper dermatology rotation, which would ensure that the GPs of the future are properly equipped to address their future work load. If that is to happen, funding must be made available to ensure that there is adequate consultant time to train budding GPs and to pay their salary while they undergo the hospital training.

[Mrs Gillan]

My hon. Friend is making a powerful argument. Does he agree that there is a worrying lack of provision for the psychosocial aspects of skin conditions? Is he familiar with Changing Faces, which, among other things, provides skin camouflage clinics? It sent me an e-mail when I was preparing for this debate saying that the King’s Fund has stated that there are only 3.7 posts across the country providing support for the psychosocial aspects of skin conditions, and the funding for those posts is under threat. Does he propose that funding should be found to try to support that vital work?

[Sir Edward Leigh]

I entirely agree. I talked to a doctor recently who said that one of his patients had not dared to go out for 20 years without wearing enormous amounts of special make-up because she was so worried about her condition. We should take that very seriously, because it affects hundreds of thousands of our fellow citizens and their feeling of self-worth.

The lack of dermatology education applies not only to GPs but to nurses and pharmacists, who also play a key role in the management of patients with skin disease. High and ever increasing sales of over-the-counter skin products suggest that people buy many products from pharmacies, yet training of pharmacists in the management of skin problems is limited, and evidence that they are providing appropriate advice is lacking.

There is considerable potential for improving self-care through the provision of high-quality patient information and the development of the knowledge and skills of community pharmacists in skin diseases. That would save the NHS money, as well as improve patient care, and it is a nettle waiting to be grasped.

The General Medical Council, working with the Royal College of General Practitioners, the British Association of Dermatologists, the Royal College of Nursing and the Royal Pharmaceutical Society, plus Health Education England and NHS England, has a duty to ensure that urgent priority is given to the provision of proper dermatological training for all GPs, nurses and pharmacists. That training should surely emphasise that most inflammatory skin diseases are long-term conditions and are likely to need ongoing care, often throughout a patient’s life. Similarly, the psychological effects of skin disease should be considered an integral part of any dermatological training course; I echo my right hon. Friend’s important point on that issue. There is good evidence for the effectiveness of general practitioners with a special interest in dermatology working within appropriate accreditation frameworks. More needs to be done to expand that group of clinicians, which is still all too small.

In addition to poor training at primary care level, there is also an issue with the number of consultant dermatologists. I pay tribute to my consultant, Professor Chris Bunker, who is well known in the field and is president of the British Association of Dermatologists. Compared with mainland Europe, the ratio of consultant dermatologists to the general population remains low in the UK, at 1:130,000. It is estimated that there is a 20% shortfall in consultant numbers in the UK.

Furthermore, there are significant issues related to vacancies in dermatology consultant posts—there were some 180 consultant vacancies at the last count. That is due both to an inability to attract people to posts in remote areas and to the widespread problem of funding being available for a post but the relevant deanery refusing to provide a training number that allows the post to be filled by a trainee.

As well as being unpleasant and demoralising for patients, some skin conditions kill; that must be emphasised. Skin conditions are not just a psychological problem. There were nearly 4,000 deaths due to skin disease in 2005, of which 1,817 were due to malignant melanoma, which is now the UK’s most common cancer. That is against a background of 13,000 malignant melanomas each year, a level that has increased 50% in little more than a decade. Those figures continue to rise, driven by the wide availability of cheap holidays in the sun, the continued fashion for using sunbeds and the inadequate resourcing of awareness campaigns. We must do more about that; improved public funding for awareness campaigns, better training and stronger regulation of the use of sunbeds are some of the most obvious answers to the problem, yet very little, if anything, ever happens. Despite skin disease being very common, the direct cost to the NHS of providing skin care is relatively modest. The overall direct cost to the NHS in England and Wales was some £1.82 billion at the last estimate, in 2006.

As of October 2013, there is no policy lead for dermatology in the Department of Health or NHS England; I put that point directly to the Minister. The majority of dermatology services are commissioned by clinical commissioning groups, but national oversight is necessary to co-ordinate care across the country and to drive the agenda. Prior to the April 2013 switchover, primary care trusts were responsible for commissioning dermatology services, but the Department did at least have a policy lead on overseeing service provision. No similar post now exists in NHS England, so no one—I hope the Minister can reassure us on this—champions this area, spots good practice, or drives change.

Earl Howe recently stated in the other place that dermatology would be spread across the five domains of NHS England, and that it would not, as was previously thought, sit primarily under long-term conditions in domain 2. That surely only heightens the need for a director to co-ordinate policy across the five domains. Even if only a junior post were to be created, patients and health professionals would be given a clear line of accountability and a person to whom they could appeal who was above their local CCG lead for commissioning. Given the prevalence of skin disease, a national clinical director for dermatology, which is what I am calling for, would not look out of place among the long list of such posts at NHS England. I urge it to consider such an appointment.

There is a lack of sources of peer-group, independent advice for people with skin conditions. Patient support organisations are mainly charitable institutions that rely, for the most part, on donations from individuals and pharmaceutical companies. People with skin disease place great value on the information and help provided by dermatology patient support groups. Skin disease is not a well-resourced area, and such groups struggle to make ends meet. There is no group at all, for example, to provide support to people with acne, the previous group having run out of funds some years ago. Given that such charities are almost certainly a cost-effective way to provide what might be life-saving support to patients, perhaps the NHS should consider being a little more generous in its funding.

I thank all those who have helped me to prepare this speech, particularly the British Association of Dermatologists. It is clear that a small number of important steps would make the greatest difference in this area of disease, including the appointment of a national clinical director to co-ordinate learning around the NHS and to drive uptake of new ideas and change. More important, however, is persuading the relevant bodies that I have mentioned to ensure that undergraduates emerge from medical school with a reasonable grasp of dermatology and that newly appointed GPs can recognise a malignant melanoma, which is probably the most important point of all. Those changes alone would have far-reaching, positive consequences for dermatology and for those with skin disease, and I urge the Minister to consider what can be done to make them a reality. I hope that this debate will make some difference.

[Sir Paul Beresford (Mole Valley) (Con)]

I congratulate my hon. Friend the Member for Gainsborough (Sir Edward Leigh) on obtaining this debate. I have tried quite often and failed, so he obviously gets on better with Mr Speaker than I do or has better luck in the ballot system. I also congratulate him on producing many of the statistics and conclusions that the all-party parliamentary group on skin has come up with, which has two advantages: the Minister has heard them, and I do not have to repeat many.

This is an important and reclusive area in the national health service, but I must start by making some declarations of interest, as we are supposed to do. First, as part of clinical practice, I have seen and referred patients with a number of skin conditions. The treatment of some has been urgent—my hon. Friend mentioned melanomas—and some semi-urgent, such as basal cell carcinomas. Such carcinomas are commonly called rodent ulcers and are just chopped out, but when I was in Palermo a few years ago I saw one that had been left on the side of a gentleman’s face and that looked something like a small, underdone McDonald’s hamburger. We do not see such things here, so whatever we say about the condition of dermatology in this country, that has gone—thank goodness. There are a number of common and disfiguring conditions. My hon. Friend touched on acne and a number of other chronic diseases, such as psoriasis, all of which some people do nothing about, but for which help is available if they look for it.

Secondly, I am chairman of the all-party parliamentary group on skin. I must admit that, shortly after the election, I was pressurised, bullied, pushed and dragged, kicking and screaming, to accept the post. One problem with many things that we do in this House is that, once close to something, it is hard not to get drawn in. It is a fascinating and complex area with a definite recognition problem. It is just not seen and accepted. My hon. Friend talked about funding but also touched on his family’s clinical problems; I shall resist doing so as my sons would never allow me. The area could do with more money, but more could be done more effectively with what we have. Much improvement can be made through education, which my hon. Friend touched on, a change in service approach and, most of all, a recognition of need.

One of the first really quite shocking points that was made to me as chairman of the APPG was that, while skin conditions account for the greatest proportion of patient visits to GPs, undergraduate education in such conditions for doctors, including those who will become GPs, is minuscule. I risk repeating my hon. Friend’s point, but it is worthy of repetition. Many student doctors spend a few weeks, possibly only one week, studying skin diseases and conditions. I am not sure whether it still applies, but I believe that education in skin conditions is optional in some medical schools. If someone wants to become a GP and opts not to learn about such conditions, they are in for one heck of a shock or run the risk of doing their patients a disservice. It is quite staggering considering that dermatologists are expected to manage over 2,000 different diseases of the skin, hair and nails.

Reputedly, as has been mentioned, 54% of the population are affected by skin disease each year, and, as my hon. Friend said, some 4,000 deaths are attributed to skin disease annually in the UK. Generally, the horrendous malignant melanoma is the main cause. The incidence of melanomas has increased by 50% over the past 13 years. The hot spots are many and varied and include Glasgow and areas of Surrey. I do not know why that is and I am not sure that anyone does. Skin cancer is the most common cancer and is the second most common cancer causing deaths in young adults. Prevalence of basal cell carcinoma equals that of all other cancers combined and increased by 133% between 1980 and 2000. Hand eczema is one of the most common reasons for disablement benefit in the United Kingdom, yet skin disease hardly ranks in the education that goes towards the basic medical degree.

As has been mentioned, we have 780 funded posts for consultant dermatologists in the United Kingdom, which is a positive. That would be impressive, but, as has also been mentioned, 180 to 200 vacancies need to be filled. To add to the difficulties, many of the posts are filled by locums who are not fully accredited dermatologists. Even more concerning is that there are few specialist facilities, which are not ordinary hospital facilities but those that provide specialist dermatological treatment, including dedicated dermatology psychology practitioners. It is little recognised that many skin diseases are always present or threatening to be present and can cause devastating effects on a person’s physical well-being and can lead to serious psychological problems.

The all-party parliamentary group on skin has produced evidence that highlights the extensive impact that skin disease can have on all aspects of patients’ lives, such as school, work or personal relationships and, as a result, self-esteem. Such conditions often affect career choices and even such basic things as where an individual can go on holiday. Who would want to sit on a beautiful beach or to go swimming from it when hit by eczema, psoriasis or any of the various pigment conditions? It just does not bear thinking about. Some conditions can obliterate what many of us would expect to be normal social, sexual or leisure activities. According to the British Skin Foundation, approximately 50% of people who suffer from skin conditions have been victims of verbal abuse—we can imagine a child with psoriasis in a school. One in six has self-harmed and 17% have contemplated or attempted suicide.

If I have one major ask of the Minister, it is that she go to one of the few—but top—skin clinics, particularly one that includes psychological treatment as a norm. She should talk to some of the patients with psoriasis or a number of other such disfiguring diseases. They are not necessarily death-causing, but they totally obliterate normal life. She can see how they are handling their conditions, as well as how modern medicine can improve their lives, in particular if they get psychiatric help. Most can be helped to keep their conditions at bay, but part of the package should require psychological help—we have an APPG paper on this. I ask the Minister to meet those patients, who range from the very young—babies—right through to the very old, and watch and listen to how they cope. That should encourage a national rethink on how the NHS treats this massive and often unrecognised area of medicine.

When the Minister visits new clinical commissioning groups, which she does, I hope that following our debate and in particular the point made by my hon. Friend the Member for Gainsborough, she will ask some pertinent questions about how commissioners draw up local service specifications for the bidding process for dermatological services. The parameters of dermatology bids need to be drawn up with expertise and experience, which many CCGs do not have. I hope that the Minister can encourage, bully, push and cajole those CCGs to buy in, pull in and seek expertise when drawing up the specifications. The British Association of Dermatologists recommends that, before carrying out a service tender, commissioners should undertake a health care needs assessment and a review of the current service provision and, most importantly, consult service users and local clinicians, especially those who know something about the conditions.

[Mrs Gillan]

I pay tribute to my hon. Friend as chairman of the all-party group on skin—however reluctantly he took the post, he does a good job and I am pleased to be a member of the group. Is he familiar with the teledermatology service pilot in Buckinghamshire where a short history and photos of a patient are sent to consultants who can then provide advice to GPs? If he is not aware of it, would he like to know more? If he is aware of it, will he recommend that the Minister look at it while examining what we do in this area? It could be a valuable addition to the tools available to help people with dermatological conditions.

[Sir Paul Beresford]

I thank my right hon. Friend. In answer to her first question, which was whether I was aware of the pilot, the answer is no. Would I be interested? The answer is yes. As for the Minister, I saw that she was writing the details down, so I do not think I need to repeat them.

The greatest change necessary is to encourage education. That has already been touched on at some length. The lack of knowledge among practitioners and clinicians is the problem. We need better education in the under- graduate curriculum and further improvement in post- graduate training, perhaps with a continuing professional development requirement. Training is also required to produce more consultants, more doctors and psychologists with a professional interest in dermatology and more specialist nurses. That is not a big ask, considering the size of the problem.

This is an area where investing more on education at every level, with better provision of specialist clinics should, in due course, ease some of the costs and pressures, in particular on primary care. There would therefore be a positive payback. I reiterate, however, the importance of the Minister seeing things first hand. I would be delighted to arrange an appropriate visit and join her if she is willing.

Managing Risk in the NHS

Cheryl Gillan Excerpts

Wednesday 17th July 2013 Commons Chamber

[Mr Hunt]

I am going to make some progress and then I will give way.

In addition, in September the right hon. Member for Cynon Valley (Ann Clwyd) and Professor Tricia Hart will present their recommendations on how we can turn NHS complaints handling into an engine for improving compassionate care.

The right hon. Member for Leigh mentioned nursing numbers. Getting the right number of staff on wards does matter, and where that is not happening for hospitals in special measures it will be sorted out. However, to suggest that that is the only issue, or indeed the main issue, is completely to misunderstand what has gone wrong. Eight of the 11 failing hospitals had increases in nurse numbers since 2010, but they still needed to go into special measures. Training, values, clinical safety and, above all, leadership are often as important.

Labour has been calling for mandatory minimum staffing numbers. Let us look at what the experts say about that idea. Robert Francis said:

“To lay down in a regulation, ‘Thou shalt have N number of nurses per patient’ is not the answer. The answer is, ‘How many patients do I need today in this ward to treat these patients?’”

He also said:

“The government was criticised for not implementing one, which it is said I recommended, which I didn’t.”

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

I am grateful to my right hon. Friend for giving way, because he knows that Buckinghamshire Healthcare NHS Trust was included in the statement yesterday. The trust welcomes his leadership and the opportunity to improve its performance, so that it can give the best possible care to patients in Buckinghamshire. Does my right hon. Friend agree that training goes to the heart of quality, particularly of agency staff? Would he like to say something about the competence, quality and checks that are made on agency staff, which will help to improve the health service across the country?

[Mr Hunt]

My right hon. Friend makes an important point. There are many locums who work extremely hard and are very committed. However, it is true that one feature of a number of the failing hospitals in yesterday’s report was that they had a high proportion of locum staff. It is harder to build up a sense of teamwork if there is a huge turnover in the people working in NHS organisations, and I know that many will reflect on that.