Organ Transplants

Caroline Nokes Excerpts

Tuesday 8th July 2014 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

As ever, it is a pleasure to serve under your chairmanship, Mrs Osborne. I congratulate the hon. Member for Strangford (Jim Shannon) on having secured this timely debate. As he said, it is national transplant week, and I wish to emphasise a particular aspect of organ donation.

The hon. Gentleman said he seldom reads The Sun; I assure him that I rarely read the Daily Mail. However, the Daily Mail has joined the campaign to encourage more organ donation and it has picked up on the case of a young boy who lives in my constituency. James Lewis, just four years old, is one of the 32 British children who desperately need a new heart. He was diagnosed last year with restrictive cardiomyopathy, which means that the lower chambers of his heart are rigid and cannot fill up with blood. His parents Kate and David have now spent nearly a year hoping and waiting for a donor, but importantly for them they have thrown their energies into Live Life then Give Life, a charity campaigning to save and improve the lives of all those in need of, or in receipt of, organ and tissue transplants. The charity exists to improve education and awareness of organ donation, and to fund projects that increase the number of successful transplants in the UK.

Little James has become something of a poster boy for the campaign and his parents have taken the brave decision to talk about child organ donors, to remove the stigma surrounding the issue of organ donation by children, as well as the superstition about it that there sometimes is. The hon. Gentleman spoke about the amazing technology that exists, including the ability to resize lungs, but unfortunately hearts cannot be resized. James is a four-year-old boy and because of his condition he is tiny; he can accept a heart only from a donor who is, at most, three times his body weight. Inevitably, therefore, that organ would have to come from another child.

I am sure that many of us here today have registered as organ donors ourselves, but how many of us have also signed up our children? As Kate Lewis says, organ donation needs to be much more visible and that is part of the reason why she has been so open about James’s condition. If she could ask one thing of the Minister today, it would be a Government-backed campaign in hospitals, doctors’ surgeries, Sure Start centres and schools as a way of removing the taboo that surrounds child organ donation.

We all appreciate how hard it must be for any parent to have to make a decision about organ donation at a dreadful time after a tragic event. However, there are significant time pressures because organs have to be retrieved very quickly. That is why it is so important for people to talk about organ donation and to understand what their loved ones’ wishes are, so that at a very difficult time the decision, in many ways, has already been made and people know what everybody’s wishes are.

I am sure that my hon. Friend the Minister will want to tell us what strategies are in place to encourage organ donation and to increase the sign-up to the donor register. It is a sad fact that although 31% of adults are signed up to the donor register, it is thought that about 57% of parents would not give consent for their child’s organs to be donated.

I urge my hon. Friend the Minister to consider pushing for discussion of organ donation to be included as part of citizenship education or personal, social, health and economic education in schools. For many children, the issue can be astonishingly straightforward, and many of them have said that they see it as being just like recycling—making good use of something that would otherwise go to waste. It is Kate’s belief that children are far more open to the idea of organ donation than their parents, and I have no doubt that she is right.

Children such as James desperately need replacement organs; their futures are entirely dependent on receiving them. As I said at the beginning, I wholeheartedly congratulate the hon. Gentleman on securing this debate, which is an opportunity to bring this issue out into the open and for ideas from a range of charities to be debated. I have mentioned Live Life then Give Life. The Cystic Fibrosis Trust has also been in touch with me, and its “Hope for More” report gives some really good pointers as to the way forward. This week is an opportunity to bring this issue to the fore and to discuss the myriad ways in which we can break any remaining taboos surrounding this life-giving issue.

Type 1 Diabetes (Young People)

Caroline Nokes Excerpts

Wednesday 30th April 2014 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

It is always a pleasure to serve under your chairmanship, Mr Havard. I add my congratulations to the right hon. Member for Knowsley (Mr Howarth) on securing an important debate. He will recall that previously—I think that it is now nearly two years ago—I led a debate in this place on eating disorders. He came along and enlightened everyone present about the problems with diabulimia—a condition that until that point I had never heard of—and he has done the same today. As the chairman of the all-party group on body image, I am very conscious of the way in which young diabetics—I have said “young” and I shall probably focus on women; I appreciate that people of all ages have type 1 diabetes and that eating disorders affect men as well as women—and, in particular, young women are manipulating their use of insulin to achieve very rapid weight loss, which poses a very significant risk to their health.

Diabetes is an entirely manageable disorder. It takes some time, experience and a lot of work for the sufferers to come to terms with it, but they can manage it. However, when it is combined with body-image issues, it can have terrible and long-lasting effects and, in some tragic cases, it can be fatal. Today, therefore, I want to focus on the issue of eating disorders among those with type 1 diabetes.

Of course, I appreciate that young people with diabetes face many issues and problems. I had a great Easter card from a six-year-old constituent of mine, Isabelle. She uses an insulin pump, as many people do, but she still has to test her blood sugar levels six times a day. I know from her letter that she is a fantastically brave young lady. She has specifically asked me to raise with my hon. Friend the Minister the issue of research funding and has highlighted the work of JDRF, which we all agree does amazing work in this area.

The all-party group on body image does a great deal of work to emphasise the pressures that young people in particular are under to conform to our so-called beauty norms, and part of that of course is about weight. It is shocking but true that too many people are prepared to sacrifice their health and well-being just to be thin. I have a view on the role that the media play in that. I am talking about the manipulated images—the use of Photoshop and airbrushing to create digitally an image of so-called perfection that of course in the real world is impossible to achieve.

Many young people fall victim to eating disorders, which can wreck lives. Nearly 4,000 people under 18 have been admitted to hospital with eating disorders in the past four years. That includes 270 boys and 163 girls under 10. And the situation is getting worse, not better. As the chairman of the all-party group, I have seen some of the most horrific consequences of eating disorders, but if they can have that effect on otherwise healthy young people—those who have previously been in good health—what effect can they have on someone who is already vulnerable?

Most children diagnosed with diabetes receive their diagnosis between the ages of 10 and 14, which as we all know is a hard time, as it is for any teenager. They are going through puberty, experiencing physical and emotional changes and, crucially, trying to fit in with their peers. Let us now take ourselves back to those years—that may be hard for some of us—and imagine reeling from a lifelong diagnosis, a diabetes diagnosis, and having to deal with the other pressures on us at that stage in life. Suddenly, the weight-loss benefits that can be had from diabulimia might seem highly attractive.

We have heard about social media and how that can be a force for good. Sadly, it can also be a very detrimental force. A quick scan of Google will show that there are many forums and chatrooms where advice is given on how to control diabulimia and how to use it to drop weight dramatically.

The prevalence of depression is twice as high among people with diabetes as it is among the general population. Particularly when people are at this vulnerable age, a diabetes diagnosis can cause dangerous levels of depression. Other hon. Members have mentioned the stigma. I was very upset to hear of a primary school in my constituency that did not want to manage a young lad’s diabetes through his being allowed to have tests and insulin injections in the classroom. It felt that that would upset other pupils. My ex-husband is a diabetic and routinely injected in front of our at that point very young daughter and, indeed, her friends. They were never upset by that; in fact, they had a morbid fascination with it and were all gripped to watch it go on. I think that it is a positive thing for children to learn from a very young age that other children have conditions that they can manage perfectly safely, that involve injections and that are not a reason for fear or stigma.

Obviously, diabulimia—the practice of reducing insulin injections to reduce calorie absorption and therefore cause rapid weight loss—is hugely unhealthy. It is one reason why the mortality rate for women with diabetes who are aged 15 to 34 is seven times higher than that for their non-diabetic counterparts. Of course, death is the most extreme consequence of diabulimia, but it is not the only one. One hundred amputations are carried out every week as a result of diabetes, and diabetics are 20 times more likely to go blind than non-diabetics. With poor management, those disabilities become far more likely. After those effects are seen, it is often a steeply downhill slope: 70% of amputees die within five years of the operation.

The combination of eating disorders and diabetes is so deadly that groups such as Diabetics with Eating Disorders have been formed to deal directly with the issues. They have found that far from a tiny minority, about 40% of 15 to 35-year-olds regularly omit the use of insulin in order to lose weight. Some people might try to pass that off as young people simply forgetting, but when we factor in that 25% of all hospital admissions for diabetic ketoacidosis are in the 16-to-25 age group, it becomes hard to believe that such a consistent and extreme lack of insulin is entirely a result of forgetfulness.

Clearly, the problem of diabetes in conjunction with body-image issues is a more widespread threat, especially to young people, than is widely known. There are some fairly obvious conclusions. Young people must be convinced to adhere to strict care processes, but efforts must also be made to identify those who might have psychological issues and who could do with support by means of a united, combined approach to both their diabetes and their eating disorders. It is unusual to find a diabetes nurse with experience of eating disorders and an eating disorders practitioner who knows about diabetes. We must address that, and I urge the Minister to make a response on it. I hope that this debate has drawn his attention to these issues and that he will share with us his views on what more can be done to identify, assist and properly care for this important group of young people.

Dermatology Funding

Caroline Nokes Excerpts

Wednesday 4th December 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I apologise for ducking in and out of the Chamber. I am trying to make arrangements to meet a couple of people, so I apologise to the hon. Member for Gainsborough (Sir Edward Leigh) and to other Members for not being here for the entirety of his speech.

I congratulate the hon. Gentleman on bringing the matter to the House for consideration. He expounded the importance of this matter to him personally. For others in and outside the Chamber, it is something that perhaps members of their families have and that they can relate to.

As the hon. Gentleman outlined, there is a need for sufficient funding. When we look at what this involves, we can quickly appreciate the importance of the subject. He referred to the 75% increase in skin cancer in the past year. As an elected representative with a particular interest in health issues—I am my party’s health spokesperson in this place—I have a close relationship with my counterpart and colleague in Northern Ireland, the Health Minister, Edwin Poots. He furnished me with figures that indicate that the increase in Northern Ireland is equal to the figures given earlier, if not just above in many cases. I find that as worrying as the hon. Gentleman did.

I have read the report and it is helpful to read some of the background information. A team from East Anglia recorded data. Some people will say that there are lies, damned lies and statistics. Perhaps that is not entirely fair, as they can provide helpful information. The team referred to an 11-year study that showed that basal cell carcinoma increased by 81%. They extrapolated their figures across the whole of the United Kingdom to come up with figures. Whether they are entirely accurate, I do not know, but I think that they do give a feel for the subject and an indication of the number of people who may be affected. The report said that

“around 200,000 patients had 247,000 cases of BCC treated surgically.”

That is just one type of skin cancer, which gives an idea of the magnitude of the problem.

I want briefly to give some details of what we are doing in Northern Ireland. Again, I do that from a positive frame of mind, because I believe that, if we are doing something, that can be helpful. The hon. Member for Mole Valley (Sir Paul Beresford) may not have known about the programme that is taking place in the area of the right hon. Member for Chesham and Amersham (Mrs Gillan), but if something good is happening, we should exchange those ideas to help each other. That is something that we initiated in relation to dermatology overall as well as skin cancer. In the past year, the Health and Social Care Board invested some £1 million recurrently and another £3 million non-recurrently in dermatology services, including psoriasis drugs. That is for a population in Northern Ireland, as the Minister will know, of 1.8 million, which puts the amount invested into some perspective.

My second son, like the hon. Member for Gainsborough, was born with what I would refer to as scaly skin, or eczema. I have to say that I did not wash him very often, but my wife would always wash him morning and evening up to about the age of six or seven, as well as creaming him twice a day. What was interesting was that eventually the eczema left him, but, as that left him, something else took its place: asthma. That was an unusual reaction, but as the eczema left, the asthma increased, so there is obviously, as the doctor at the time made us aware, a medical connection between the two conditions. The interaction was close and clear.

The Northern Ireland Department of Health has an additional £240,000 of recurrent funding confirmed for dermatology services in the Northern Health and Social Care Trust. That is only one of four trusts in Northern Ireland. The board is working with the others to finalise their recurrent funding requirements, which are estimated to be about £500,000. I mention that strategy of working together with the trusts because trusts and councils on the mainland could come together to do something similar to spread the cost.

The debate is about the funding of dermatology in the NHS. We are in difficult times, and everybody acknowledges that finance is not always available in the way it was in the past. We have to make better use of the money we have, and we have to try to do that in a way that delivers services and address all the issues. We have tried to do that in Northern Ireland, and I know the House and the Minister are also trying to make better use of the money that is available.

The Health and Social Care Board has also been working with local GPs to redesign the traditional patient pathway for dermatology assessments. Again, early diagnosis is important, and the figures in the background information for the debate indicate that. Some of the survivors of skin cancer I have spoken to would say the same. Some of those cancers are usually completely curable. One cancer, if caught in the early stages, might need surgery, chemotherapy and/or radiotherapy, but there is hope when the dreaded “big C”, as many people call it, comes upon us.

Initiatives have also included the funding of a photo-triage pilot. It will, I hope, help the Minister to hear what we have been doing. The pilot scheme will deliver its results in March next year, and it would be helpful if they were made available so the Minister can see what has happened. As part of the pilot, GP practices can refer patients with suspected malignant melanoma or—forgive my Northern Ireland accent—squamous cell carcinoma to a dedicated photographic clinic, which is used to triage the patient, thus reducing unnecessary out-patient attendances. That pilot can shorten the process and focus resources on the issue in hand. If the pilot is successful, as I hope it will be, the figures it produces will be helpful.

I want quickly to comment on sunbeds. Some Members have spoken about them, and others will speak about them as well, including perhaps the hon. Member for Romsey and Southampton North (Caroline Nokes).

[Caroline Nokes (Romsey and Southampton North) (Con)]

indicated dissent.

[Jim Shannon]

Maybe not—I thought that might be one of the issues she would touch on.

In my previous job as a Northern Ireland Assembly Member and a member of Ards borough council, in my constituency, I had some influence on this issue. The council was concerned about the effects of sunbeds, and it was aware of the importance of controlling, monitoring and regulating them. It took decisions to do that, and other councils took similar initiatives. Again, that shows we have done things in the way they should have been done.

Again, I congratulate the hon. Member for Gainsborough on bringing this important matter to Westminster Hall for consideration. I very much look forward to the Minister’s response. I hope that my comments about what we do in Northern Ireland have been helpful, and that is particularly true of my comments about the pilot scheme and the way in which triage can work with GPs, hospitals and, more importantly, the patient.

--- Later in debate ---

[Caroline Nokes (Romsey and Southampton North) (Con)]

I assure you I will keep my comments brief, Mr Turner. I congratulate my hon. Friend the Member for Gainsborough (Sir Edward Leigh) on securing this important debate on the funding of dermatology in the NHS and on giving Members the ability to raise specific issues that may have been put to them by dermatologists, expert groups and patients.

I am a member of the all-party group on skin, although I am obviously not as exalted a member as my hon. Friend the Member for Mole Valley (Sir Paul Beresford), and I do not share the same expertise, but I have benefited over the years from personal experience of dermatological services. I am also the chair of the all-party group on body image, which has given me the privilege of working with organisations such as Changing Faces, which has brought to my attention some of the work that it does with patients with severe skin conditions. Changing Faces provides what it refers to as skin-camouflage clinics, and the word “camouflage” is interesting in this context. Many people who suffer from serious skin conditions will attempt to camouflage themselves—to hide away—because they are so self-conscious about their conditions.

I was present in this Chamber yesterday afternoon for a debate on the effects of the drug Roaccutane—a very effective, serious drug used to treat severe acne. I have a different Minister to address my comments to today, and I do not intend to rehearse the whole of yesterday’s debate, but there are some pertinent issues that I would like to draw to her attention.

Many sufferers of skin conditions will have depression and anxiety long before they ever get to see a dermatologist, and yesterday we heard in detail how important it is for dermatologists to have the time and the knowledge to be able to go through in detail the possible side effects of any medication that may be prescribed. Even dermatology drugs—drugs for the skin—can have severe side effects, including depression, and I am sure Members will agree that psychological illnesses need careful handling and treatment. Medical professionals need time to address concerns properly, but more than one consultant dermatologist contacted me before the debate to say that the specialism is under pressure and that time is at a premium.

Yesterday, the hon. Member for North Devon (Sir Nick Harvey) raised the issue of Roaccutane and the need for rigorous up-to-date research to ascertain why some groups of patients are more vulnerable to its severe side effects than others. When I say there are severe side effects, I should point out that there have been some incredibly tragic cases, in which young people who have been prescribed the drug have suffered terrible depression, and that has sometimes gone on for many months or even years after treatment has concluded. A number of young people have also committed suicide, and that is thought to be as a result of having taken this drug. Sadly, we lack up-to-date research and scientific evidence that proves a causal link between Roaccutane and suicide. The hon. Gentleman’s contention yesterday—I support him in this—was that only a public authority will be in a position to undertake the level of research required.

I would like to take the opportunity of today’s debate to highlight some points to the Minister. About 13 million people will present at their GP with a skin condition, and family doctors spend a significant proportion of their time treating patients with a skin problem, so dermatology is a significant part of the work of primary care. Dermatologists are concerned that the time they are spending on these conditions is not matched by the investment in research and that dermatology is something of a Cinderella service, as we have heard.

The overall burden of skin disease is large and growing, and to that mix we can add a lack of consultants and the drugs that can have a seriously negative impact on mental well-being, so it is not surprising that there are real concerns. With the specific case of Roaccutane in mind, I suggest that there needs to be better investigation of the causal link between the use of Isotretinoin and depression, self-harm and even suicide. That research is long overdue, and I have no doubt that it will fall to the Department of Health to make sure it is funded. I urge the Minister carefully to consider the case, which I wholeheartedly support, for better science, more evidence and independent study.

I know from work with organisations such as Changing Faces that those suffering serious skin conditions are far more likely than the general population also to suffer depression. Skin conditions can be extremely debilitating, especially for the young; they can cause a lack of confidence and an unwillingness to engage in social activities. At that particularly difficult and hormonal time, they can also have a disproportionate impact on mental well-being.

It is very careless to dismiss skin complaints as nothing more than a few spots or a bit of dryness or redness, especially if the face is affected. To the sufferer, such things can be a huge emotional and psychological burden. My hon. Friend the Member for Gainsborough spoke of the endless images in the media of physical perfection and perfect, flawless skin, and that all adds to the psychological stress.

I wish to focus briefly on training and the importance of making sure there are trained professionals to step into the 180 unfilled consultant posts the British Association of Dermatologists estimates currently exist. In some places, those posts are filled by long-term locums, who might be without the training and credentials required of a permanent appointee.

I would like to take the Minister back to the subject of Roaccutane. It is a highly toxic drug, intended for use in only the most severe cases and requiring very close supervision. It can be prescribed only by a dermatologist, the very specialism in which as I have explained there is a shortage; so patient waiting times increase, and the time the consultant has to spend with each patient reduces, along with the opportunity to discuss changes in their mood or mental well-being. The time for follow-up care is inevitably limited. That all comes together to give patients the impression of long waits and rushed appointments and results in a greater temptation to find a private consultant and pay for a private prescription. Among the families of people who suffered negative effects from Roaccutane, several have emphasised to me how many young people who had self-harmed were in receipt of private prescriptions because the families were too desperate to wait the six months for an NHS consultation.

My experience of consultant dermatologists working in the NHS has been nothing short of fantastic. The professionals with whom I have been in contact are dedicated and determined to get the best outcomes for their patients; and they have cut no corners. However, the growing dermatology case load puts them in an increasingly difficult position—perhaps particularly on the south coast. In places such as my constituency there are longer hours of sunshine and high life expectancy, and the incidence of cases of skin cancer is increasing. That all adds up to a stretched service. A local consultant dermatologist wrote to me outlining what he called a work force crisis, with a national shortage of consultants and considerable variation in the quality of dermatology provision across the country, as services are increasingly provided by those without appropriate training. That cannot go on. The service is demoralised and under pressure, and is struggling to identify where the next generation of skin experts will come from.

I urge the Minister to consider the situation closely. The specialism is crying out for the sort of TLC that the specialists are so good at giving their patients, which gives those patients the confidence to go out and face the world. I commend to the Minister the remarks of my hon. Friend the Member for Gainsborough about training, the threat of fatal mistakes in diagnosis and the need for a national clinical director in dermatology.

Roaccutane

Caroline Nokes Excerpts

Tuesday 3rd December 2013 Westminster Hall

[Sir Nick Harvey]

My hon. Friend tempts me beyond my limited medical expertise, but the logic of what he is describing sounds convincing. The other point to be made about the delay in some cases is that the numbers on the incidence of suicide and psychotic disorder that I quoted a few minutes ago are highly likely to be gross underestimates. For example, just this morning, I had a telephone call from someone in Cornwall who had heard a morning bulletin on his local BBC radio station referring to this debate. He said that for the first time, the penny dropped with him. He had attempted suicide and been forced out of the Royal Navy, but he had never before put the two things together. With the benefit of many years’ hindsight, he realised that it happened just months after he had used Roaccutane to deal with acne. I therefore think that it is fair to say that we are looking at numbers far greater than we first thought.

[Caroline Nokes (Romsey and Southampton North) (Con)]

I congratulate my hon. Friend on this important debate. Given that he has said that the number of people affected may have been grossly underestimated, does he agree that what is desperately needed is robust scientific investigation and analysis of the numbers and possible causes, especially as many of the studies are not very up to date?

[Sir Nick Harvey]

I entirely agree that a great deal more research is needed. My point in raising the matter with Government through my hon. Friend the Minister is that I cannot see who other than a public authority could initiate or, indeed, fund such research. It is certainly not in the manufacturer’s interest; Roche clings to the notion that millions of people have been treated with the drug without side effects or mishap. That may be perfectly true, but it does not alter the fact that, for those who have suffered a serious side effect, the impact has been devastating. I ask again: where is the precautionary principle?

[Sir Nick Harvey]

What has happened in the United States is interesting. As we know, the United States has a much more litigious culture than we do in the UK, and the manufacturer there has paid out to a patient on quite a large scale. That patient suffered different side effects, but the manufacturer nevertheless had to pay out. That, combined with the fact that generic versions of the drug are now available on the US market, has caused the manufacturer to withdraw altogether from the US market.

While we are discussing the attitude of Roche, it is worth noting that the information in the drug’s packaging includes explicit warnings about the possible psychological side effects, including incidences of suicide. If Roche acknowledges that to the extent of being willing to put it on the information, it seems to be recognising that for all the millions who may have used it successfully, a cohort of the population has nevertheless suffered as a result of using the drug.

The logical continuum of that is the ultimate withdrawal of the drug altogether. Rationally, I do not think that we can ask the Government to move straight to that in one go, much as I would like them to. Were they to attempt to go down that path, in no time at all they would find themselves locked in some sort of litigation with Roche, which would certainly not stand by and watch a major market like the UK ban its product. The court would expect the Government to demonstrate overwhelming scientific evidence, which I do not believe is available as yet. That is why, as a first step, I am calling for such scientific research to take place.

[Caroline Nokes]

On my hon. Friend’s point about calling for the drug to be withdrawn, does he agree with the dermatologist in my constituency who sent me an e-mail today saying that it would be a sad day for many thousands of acne sufferers if the drug were withdrawn completely? We desperately need this debate and the future to hinge on accurate scientific information.

[Sir Nick Harvey]

I am not entirely sure that I agree. Other treatments for acne are available. I readily acknowledge that they may not be as effective, but they include antibiotics and a variety of other treatments. Unless and until we have some way to predict which people are most likely to suffer catastrophic side effects, I would prefer on the precautionary principle that no one at all took the drug. If we could predict with some certainty—whether by means of genetics or whatever—who might be predisposed to such side effects, then and only then might it be safe to argue that anyone without such a predisposition could safely use the drug, but we are nowhere near that yet. I suffered from acne and was prescribed antibiotics for 11 years or so to deal with it. It is a miserable business—no one would make any bones about that—but there are other treatments, and the catastrophic consequences for some people of using the drug suggest that we would be better off without it.

--- Later in debate ---

[Sir Nick Harvey]

My hon. Friend undoubtedly raises a logical loop, but there is the question of time scales, because even a very brief usage of the drug could have—as other hon. Members have suggested—quite a lasting impact. I simply do not accept that the horribly sudden onset of mood swings, paranoia and episodes of psychosis can be remotely compared with any feelings of lowered self-esteem that might be experienced by people because they suffer from acne.

Jon Medland, my constituent, had no history of depression. Similarly, the heartbreaking suicide note of James Sillcock, who died last year, told how he had “loved” his life, but it also said that Roaccutane had “changed his world completely”. Worryingly, a European Medicines Agency report in 2003 confirmed that discontinuing the drug may not be enough to alleviate adverse reactions. That was certainly true in a number of suicide cases, where young people realised they were “not themselves” and stopped the course of treatment, only to find themselves falling deeper and deeper into depression afterwards, which comes back to the point I was making earlier.

At the very least, this issue highlights the need for a greater awareness at all levels of the patient’s interaction with doctors; direct approaches must be made to monitor the patient’s mental state. Ultimately, we may never know how many people have been affected. Roaccutane was linked to nine suicide cases between September 2010 and September 2011, but with suicide such a sensitive topic, we can imagine that some victims’ families have not come forward. Indeed, others may not have realised the full picture—that the container of insignificant-looking pills, kept in the bathroom, for a few spots could have led someone to take their life in a state of psychosis.

It is also worth mentioning again that Roche has pulled Roaccutane from the US market. The drug first came on to the market for chemotherapy and then was marketed to a wider audience when its acne-curing properties became apparent. A number of doctors have been keen to argue that it is being overprescribed as a first-line treatment; it is only supposed to be used after at least two other medicines have been tried. In 2009, Dr Tony Chu said:

“You know with Roaccutane you can get patients off your books in six months rather than go through the mill and try them on a variety of things until you hit on the thing that will actually work for them...it’s bad medicine.”

If doctors are doling out Roaccutane with little thought about the bigger picture, they are also ignoring the psychiatric risks.

[Caroline Nokes]

Will my hon. Friend give way?

[Sir Nick Harvey]

I have an eye on the clock, but I will give way briefly to my hon. Friend.

[Caroline Nokes]

Does my hon. Friend agree that Roaccutane can only be prescribed by a dermatologist, so the vast majority of patients would have gone through products prescribed by their GP before they ever get to a dermatologist and have the possibility of having Roaccutane prescribed?

[Mr Gary Streeter (in the Chair)]

Order. Before the hon. Gentleman responds, can we make sure the Minister has time to respond to the debate?

--- Later in debate ---

[Norman Lamb]

I was going to make that point. It is important that proper advice is given to patients when a drug is prescribed. My hon. Friend raises a serious concern on behalf of his constituent. I accept his point. The patient information leaflet is an essential document if the patient is to be fully aware of the possible risks of treatment and make informed choices about their care. Of course, unless they are directed to it and advised to read it by the clinician, the chances are that they will never read it. That is an important point.

[Caroline Nokes]

I have sat in on four consultations when Roaccutane has been prescribed. I reassure the Minister that consultant dermatologists tend not to just hand over a leaflet; they stand over a patient while they read it.

[Norman Lamb]

I am grateful to my hon. Friend for her intervention. I am sure that that is the usual practice. However, the concern expressed by my hon. Friend the Member for Beckenham (Bob Stewart) suggests that that may not uniformly be so, though it certainly ought to be.

Since 1998, there has been increasing awareness that Roaccutane may be associated with psychiatric adverse reactions, particularly depression and suicidal behaviour. The assessment of this issue has been complicated by the fact that young people with acne are already at an increased risk of depression, regardless of treatment. All psychiatric adverse reactions were assessed by the working group on isotretinoin in 2005. This working group of the Committee on Safety of Medicines consisted of independent experts, including psychiatrists and dermatologists, who considered the available data from published literature and case reports. All new information on psychiatric adverse reactions has remained under close and regular review since that time.

The product information for Roaccutane, and the other generic alternatives, states that particular care needs to be taken where patients have a history of depression, and that all patients should be monitored for signs of depression and referred for appropriate treatment if necessary. It also states that stopping taking Roaccutane may not lead—as hon. Members have mentioned—to improvement, and therefore further psychiatric or psychological evaluation may be necessary and appropriate.

As it is associated with rare, serious side effects, Roaccutane can only be prescribed by, or under the supervision of, a consultant dermatologist. The British Association of Dermatologists has published guidelines for its members on when to prescribe Roaccutane and how best to monitor patients for adverse effects during treatment. The guidelines recommend that patients be asked about any previous psychiatric illness, and the patient and their family should be made aware that the medicine may affect their mood. Patients should be asked about psychological symptoms at every clinic visit.

I appreciate that, in the case of the constituents of my hon. Friend the Member for North Devon, there appeared to be a rapid deterioration of mental health—certainly, a deterioration that immediately followed the start of taking Roaccutane. Female patients will be asked about such symptoms every four weeks because of the need to rule out pregnancy before a new prescription is issued. The Medicines and Healthcare products Regulatory Agency keeps this issue under close review. Any new information is carefully assessed to see whether there is a need to take action to alert health care professionals and patients.

This debate has provided an important opportunity to update the House on developments relating to the prescribing of Roaccutane, which was last debated about 10 years ago in this place. As with any effective medicine, difficult issues of risk and benefit must be grappled with. Few hon. Members will not have known someone who has suffered, physically or mentally, with the scars of acne—severe and acute acne can be a disabling condition—and few would doubt the serious nature of the potential side effects of this powerful medicine, and their tragic potential consequences. In the short time available, I hope that I have been able to update the House on the measures in place to ensure safe prescribing of Roaccutane.

Release of Bodies from Hospital

Caroline Nokes Excerpts

Wednesday 30th October 2013 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

As ever, Mr Hood, it is a pleasure to serve under your chairmanship. I particularly thank Mr Speaker for granting this important debate on a subject that, had it not been brought to my attention by a constituent, I would not have believed possible outside the scripts of comedy or perhaps, more appropriately on the day before Hallowe’en, a horror film. However, the occurrence is possibly far more widespread than is known about, and my constituent fears that it is the modem equivalent of body-snatching by unscrupulous undertakers who, keen to ensure that they are subsequently contracted by bereaved families to organise funerals, take unlawful control of a body.

This situation, which the funeral industry states is rare, and the hospital concerned states arose under unusual circumstances, is none the less one raised by my constituent amidst fears that it was in fact a deliberate attempt to exploit bereaved families in the immediate aftermath of a death, and that it was made possible by a legal grey area and poorly drafted Department of Health guidelines. As a result of my constituent’s case, and after acquainting myself with the guidelines on how bodies are dealt with, I decided to seek this debate to raise two issues. The matter is clearly of limited interest to colleagues, but I welcome the opportunity to make my points direct to the Minister, and I look forward to his response.

First, the existing legislation needs clarification. There is a definite need for guidelines for hospitals and hospice staff to be revised, so that they comply with the existing law, and prevent staff from being exposed to unwarranted prosecution based on the technicalities of existing legal grey areas. Secondly, and probably more importantly, I want to highlight a culture of complicity between undertakers and hospital staff, and potentially deliberate unscrupulous practices deployed by undertakers, who get away with them not in spite of Department of Health guidelines but, worryingly, because of them.

A further point worth raising is Bristol royal infirmary’s failure in its duty of care towards the deceased and her family. On Saturday 23 March this year, Gladys Pugh, the mother-in-law of my constituent, Mr Peter Williams, sadly died in Bristol royal infirmary. Her body was taken to the hospital’s mortuary to await the coroner’s permission for it to be released. The following Tuesday, Mr Williams and his wife began the painful task of contacting undertakers to ask for quotes and to discuss possible funeral arrangements. Three funeral directors were contacted. Mr and Mrs Williams planned to travel to Bristol to register the death and to visit the funeral directors they had contacted, but with the long Easter weekend so close, they could not make the journey until 2 April. The family contacted all the undertakers they had spoken to and informed them they would come back to them if they were interested in taking matters further after the Easter break.

On 2 or 3 of April, one of the undertakers, Thomas Davis, part of Bristol Funeral Directors group and a member of all the relevant trade organisations, including the National Association of Funeral Directors, contacted Mr Williams and asked what was happening about the arrangements. Mr Williams informed them clearly that they had decided to engage the services of another undertaker, thanked them for their interest, and left it at that.

It then transpired that without the permission of the Williams family and without any form of verbal or written contract, Thomas Davis had driven to the hospital’s mortuary on 27 March, the day it was contacted by Mr Williams, and removed Mrs Pugh’s body to one of its own facilities. The situation came to light 10 days after Mrs Pugh’s body had been taken from the mortuary when the company subsequently appointed by my constituent contacted the mortuary to arrange collection of Mrs Pugh’s body, only to be told that it had been taken away some 10 days previously.

There was an understandable feeling of horror, shock and disbelief that Mrs Pugh’s body had been kidnapped by an undertaker whose sole instruction was to offer a quote, which incidentally was never forthcoming, and to inquire about available dates for cremation. I use the word “kidnapped” after considerable thought. First, I cannot use the word “stolen” as a dead body is not technically the property of anyone except the deceased. That is one of the grey areas that legal experts agree needs clarification. Secondly, as kidnapping is the removal of a person without their consent, and as a dead person is still considered a person in law but is unable to give such consent—and, as “stolen” would not be legally correct—“kidnapped” is the only suitable word that I can use to describe what happened.

I argue that Thomas Davis acted unlawfully, because all that had been requested by the Williams family was for a quote to be provided for the services, and for provisional inquiries to be made with a local crematorium. There was no contract, no formal quote, and at no time were the family informed that the body had been collected. Furthermore, at no time was any of the paperwork required under Department of Health hospital guidelines for the release of Mrs Pugh’s body handed over by the family to Thomas Davis.

It is that point—the lack of consent given by the Williams family—that makes the removal of the body unlawful. That is where the first issue arises. Ignoring the motivation for a moment, how can an undertaker take possession of a body from a hospital lawfully? The answer—for it to be lawful, the person in control of the body must be enabled by law, by dint of their status in the life of the deceased or through being appointed the agent of such a person. In the case of Mr Williams’ mother-in-law, the undertakers had not been given the legal right to take control of the body by the family and were therefore not in legal possession of it.

What checks were made by the mortuary staff to ascertain the lawful right of the undertakers to take responsibility for the body? None, it would appear. It seems that the law is at the same time both very clear and utterly confusing on that point, and furthermore, contradicts the Government’s own guidelines. I hope that my hon. Friend the Minister will bear with me while I try to explain that.

Although NHS trusts have very strict guidelines on releasing bodies, largely based on the Department of Health’s publication, “Care and Respect in Death: Good Practice Guidance for NHS Mortuary Staff”, and usually stipulate that the person collecting the body must be in possession of the relevant paperwork, often including “the green form”—an interim death certificate releasing the body for disposal—those guidelines are, I am told, probably of no legal effect. In the case of Bristol royal infirmary, its own release note, which Mr Williams was told would be essential for the release of the body, is also possibly not worth the paper it is printed on.

That is because case law dating back to 1841 states that once a person has died, unless the medical staff or the coroner order an autopsy, the deceased person’s body becomes the responsibility of—but not the property of—in the following order: the executor of the will; the next of kin; or, in the absence of the above two, a person or persons intending to pay for and arrange the funeral. Failing that, the local authority must take control. There are, therefore, a limited group of people to whom lawful control of a body can be given, which can also include their appointed representatives. That is the bit of the law that is absolutely crystal clear.

However, what follows is much more confusing. Even where guidelines stipulate which forms must be presented before a body can be released—such as Bristol royal infirmary’s own release form—in fact, once someone who can lawfully take responsibility for a body demands to be allowed to do so, the hospital is apparently powerless to prevent the release of the body, irrespective of trust or Department guidelines, and irrespective of what paperwork the person or persons may or, in this case, may not have.

That is a very important, albeit technical, point, which I wish the Minister to take note of, because if a hospital employee, following the appropriate guidelines, refuses to release the body to someone who can lawfully take control of it, honestly believing that he or she is doing the right thing, that employee can technically open themselves up to prosecution for preventing a burial or cremation—even if that was never the intention and even if they were simply seeking to establish whether the person taking responsibility was legally entitled to do so.

[Jim Shannon (Strangford) (DUP)]

I spoke to the hon. Lady beforehand about this issue. She has outlined technical issues about how the body should have been released and where the process has fallen down. Is she also concerned at the impact that such a situation has on the families at a time of grief and sorrow? No matter what, that cannot be overlooked.

[Caroline Nokes]

I thank the hon. Gentleman for that intervention. He is, of course, exactly correct on that point. It is a time of great grief and distress to families, and they are often not in a position either to know what the legal technicalities are or to ensure that they are properly implemented. I will come on to his specific points very shortly.

According to some legal experts, this grey area has arisen from a number of test cases—including one in 1974—that have apparently established that a person claiming lawful control does not need to provide any paperwork at all to justify their claim over a body. Furthermore, and of great concern, not only are there no stipulations in law regarding what paperwork must be presented, or what conditions met, irrespective of guidelines, it is apparently illegal to demand that anyone seeking lawful control of a body do anything to justify their claim. In other words, unless my understanding is incorrect, not only are trust guidelines of no legal effect, but they can actually put the staff seeking to implement them at a technical risk of prosecution—something that I know will be of concern to my hon. Friend the Minister.

The first issue, therefore, that I would like my hon. Friend the Minister to consider is clearing up the discrepancy between the guidelines that NHS, hospice and care home staff are given and the technical exposure to prosecution that they face if they seek to abide by them. Furthermore, perhaps the law can also, at the same time, be clarified to state what rights the next of kin have over a body, which is something that it does not clearly do at the moment, because, as I said earlier, the body is not technically considered to be the property of anyone.

I turn to the second point that has been highlighted by my constituents. The right of lawful control does not pass to undertakers unless they have been properly contracted and bestowed with the right to take the body. Furthermore, departmental guidelines clearly state that that right must be demonstrated by the production of the relevant paperwork. What we have to ask, therefore, is how did this situation arise and how widespread is the practice?

In accordance with Department of Health guidelines, Bristol royal infirmary operates a system where a body will not be released without staff being presented with one of its own release notes—something that my constituent was very clearly told. However, in this case, no such release note was presented, because the undertaker was never given it. How, then, did the body come to be given to the undertaker? In answer to that, I again draw the attention of my hon. Friend the Minister to his Department’s guidelines, which, like the law, can at best be described as vague.

For example, while the guidelines state that a body must be released to “the correct recipient”, they do not say who that is. The guidelines also say that “standard operating procedures” should be known by all staff through training, and be robustly audited. They clearly state:

“Before a deceased person’s body is released, mortuary staff should check that all necessary documentation is complete”.

Even if that was a legal requirement, which it seems it may not be, in this case there were clearly no checks of the paperwork because none can have been presented. The guidelines go on to state:

“The body of a person who has died may be collected from the mortuary by the family, but is usually released to a representative, most often a funeral director. Mortuaries should therefore ensure that they have good lines of communication and working relationships with local funeral directors.”

Here, the advice is that hospitals need good working relationships with local undertakers. It seems that that advice has been taken far too literally in this case at least, and I fear elsewhere, with the establishment of a very cosy relationship between undertaker and hospital—a relationship where it is deemed that things can be taken on trust, and contrary to guidelines, no checks are required as to the legal right of the undertaker to take control of the body. That is not a good working relationship with clear lines of communication; it is an abuse of trust.

Certainly, what is clear in this case is that Bristol royal infirmary and the undertakers did not act in accordance with the Department’s guidelines and were, in fact, acting like some modern-day Burke and Hare operation. What is abundantly clear is that Bristol royal infirmary’s response to Mr Williams is inadequate. Although some changes to policy have been implemented, those are changes that my constituent calls “minimal”, and there is no guarantee that it will not happen again. As my constituent noted in a letter to the hospital’s chief executive, Mr Woolley:

“The Post Office would appear to take more care in the release of a parcel than the BRI did in the release of a body”.

To say that my constituent is unhappy with the response that he has received from the hospital would be an understatement. He is desperate to see the changes required to prevent other families experiencing the kidnapping of bodies belonging to their loved ones, but feels that the points he has raised with the hospital have simply been ignored, with the hospital blaming a member of staff for not following procedures.

Mr Williams asks two perfectly reasonable questions in his complaint to the hospital. Those questions are, as yet, unanswered. First, why did Thomas Davis arrive at the hospital without the paperwork that the hospital itself says is essential for a body to be released? Secondly, why was the body released without that paperwork? Mr Williams is worried that the answer to both those questions is this: because the undertaker assumed that he would not need the paperwork—an assumption based on past experience of acting in a similar manner. That begs the obvious question: how many other bodies have been taken in that way? It appears that the hospital will not accept responsibility for its failure in its duty of care towards the Williams family, seeming to want to blame individual hospital employees and the funeral industry.

That is another area of concern to Mr Williams, because all that has been received from the funeral industry is a response that is, to say the least, disappointing, stating only that “these mistakes sometimes happen” and offering nothing beyond that. My constituent has rightly complained to the health service ombudsman, and we await with interest the decision on that complaint, but there is no redress against the undertakers who took the body of my constituent’s mother-in-law, held it unlawfully and refused to take responsibility for doing so, knowing that they are virtually free of any legal consequences for their unlawful behaviour.

I hope that, in his response, the Minister will touch on both aspects of this sorry tale: the lack of legal clarity, rights and protection that both relatives and NHS staff have; and measures designed to prevent undertakers from seeing distressed and grieving families as representing a lucrative opportunity provided that they can first kidnap the body by relying on the cosy relationship that they might enjoy with the local hospital, which the Department’s own guidelines encourage.

From grave robbery to daylight robbery, the funeral industry has questions to answer, as, having spoken to campaigners in preparation for this debate, I can tell the Minister that, despite the comments of the industry, this practice is said to be far more widespread than is believed or acknowledged. Sadly, I am told that people rarely complain, because they simply want to grieve and move on, and the funeral industry is rarely held to account.

I suspect that neither the Department nor the funeral industry keeps figures on how often this practice happens. It would be interesting to know whether the Department has some figures. However, my constituent fears that his experience is merely the tip of the iceberg—a view shared by campaigners in this area. I hope that now that this issue has been highlighted, the Department will seriously consider bringing clarity to what the legislation says and will offer protection to NHS, hospice and care home employees and to grieving families, protecting them from undertakers who should be there to offer a service at the time of greatest need and ensuring that bereavement and grief are not exploited.

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

I congratulate my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) on securing the debate and raising an issue of extreme sensitivity. I can imagine the enormous distress for the family involved. As the intervention suggested, at a moment of grieving, no family would want to have to cope with this situation. Let me be very clear that the practice that my hon. Friend describes, whether it is a one-off or more widespread, is completely unacceptable. That message has to be disseminated to the entire system, because respect for families who have suffered a bereavement and respect for the deceased person are of paramount importance. I am therefore very grateful to my hon. Friend for raising this subject and enabling me to respond. I am grateful also to her constituent, Mr Williams, for raising the issue with her so that it could be exposed in Parliament.

Each year, more than 500,000 people die in England and Wales, with local mortuary and bereavement services working hard to ensure that during the period of grief, the bereaved are supported and due regard is given to their individual needs. I think that in the vast majority of cases, that happens and people are treated with the respect that they deserve.

The current guidance, entitled “When a Patient Dies: Advice on Developing Bereavement Services in the NHS”, which was published by the Department in 2005, highlights the importance of involving relatives in decisions about care after death, but does not set out specific guidelines on the release of bodies. In addition, the document entitled “Care and Respect in Death: Good Practice Guidance for NHS Mortuary Staff”, which was issued in 2006 and to which my hon. Friend referred, states:

“Where families have individual, cultural or religious preferences concerning the storage, handling, transportation or presentation of the deceased person, these need to be carefully documented and accommodated wherever possible.”

Let me now deal with the legal context. A dead body is a possible source of infection, so society requires that the law balances the need to give regard to the respectful disposal of the dead with the need to ensure the protection of public health. Hospitals have put in place procedures to try to manage a number of competing demands and legal requirements in a way that causes the least difficulty for the vast majority of people and that allows coronial, health-and-safety and other requirements to be met.

The law does not recognise—my hon. Friend made this point—a dead body as someone’s property, but it has been held in case law that the executors, administrators or other persons charged by law with the duty to dispose of the body have a right to its custody and possession until it is disposed of. In straightforward cases, in which the coroner is not involved, the duty to dispose of the body can rest with a range of individuals or organisations, with an established order of precedence. The executor of a will, not the next of kin, has the primary claim to possession.

Generally, when a person dies, an early priority for the family is to arrange the final disposal of the person’s body. Lawful disposal may occur once a registrar has received a satisfactory medical certificate of cause of death and subsequently issued a certificate of disposal, commonly known as the green form, or the coroner issues a certificate of disposal where a death has been referred for a coroner’s investigation. My hon. Friend has clearly done an enormous amount of research on this subject. I am very impressed by the amount of knowledge that she has acquired.

The person with the authority to administer the estate of the deceased person has the right to possess the body in order to arrange disposal of the body— the funeral. The green form is one of the pieces of documentation required to allow a funeral to proceed and is often passed from the family to the funeral director. However, it is not a legal requirement for an individual to produce a green form in order to collect the body from the hospital. In practice, many hospitals appear to treat the green form as the key documentation for body release. I understand that hospitals do that to confirm that the death is not a coroner’s case. Potentially, up until the green form is issued, a registrar could refer a death to the coroner because new information relating to the death has come to light and the registrar finds themselves under a duty to report the death to the coroner. The other reason for some hospitals insisting on seeing the green form is, understandably, for reassurance that the body is being released to the right person. That is key to the case that my hon. Friend has raised today.

In the context of about 500,000 deaths a year, my Department has had very little representation to suggest that local hospital procedures for the release of bodies are causing difficulties. I am interested in this. My understanding is that the Department has not had many representations, yet my hon. Friend’s assertion, which I take seriously, is that the practice could be more widespread. We need to understand whether that is the case. At the moment, there appears to be a lack of evidence, but if she or anyone else is aware of more evidence, we need to hear about it. This is a very important matter.

[Caroline Nokes]

On that specific point, which relates to the concern the hon. Member for Strangford (Jim Shannon) raised earlier, one issue my constituent raised was that the practice occurs at a time of bereavement and grieving, and consequently people are far less likely to complain, because they wish to move on and get on with their lives and the grieving process. That point is important, because we simply do not know the extent of the problem. My constituent is concerned because his mother-in-law’s body was released with no paperwork whatsoever, so the practice could be far more widespread than we will ever know, because it is unreported.

[Norman Lamb]

I thank my hon. Friend for that intervention. I appreciate that if such practices have occurred, families will in many cases feel reluctant to raise a complaint. None the less, we need evidence, so if people are aware of such activities, I encourage them to come forward.

In some areas, funeral directors had experienced delays in collecting bodies from hospitals due to the documentation required by the hospital, which relates to the problem my hon. Friend raises. A national representative body of funeral directors reported its members’ concerns to officials in my Department. Following the concerns being raised with us, my Department re-circulated advice on the release of bodies to the NHS in a 26 October 2012 edition of The Week bulletin, to highlight to NHS trusts that having sight of the green form was not a legal requirement for the release of bodies, that holding bodies can cause unnecessary delays, and informing them of proposals to consult on a draft body release form as part of the consultation on death certification reforms. I want to reinforce the point that a delay in the release of the body can also be distressing for loved ones, who are going through bereavement. Ensuring that the process works efficiently is incredibly important.

Some hospitals have been using their own body release forms, which is the impression I received from Bristol. The situation my hon. Friend describes would not have happened if the hospital had followed its own procedures. Such forms are used to facilitate release of the body, and that is potentially a way forward to resolve the problem. Officials have worked with key partners, such as mortuary technicians, bereavement services and funeral directors, to develop a draft body release form designed to provide the NHS with reassurance about the appropriateness of releasing a body, which they currently achieve via the green form. My Department will seek views on the merit of such a form, and the contribution of key groups, such as funeral directors associations, will be vital. The consultation will make further relevant proposals, and when it is published in due course, I will welcome my hon. Friend’s participation.

My hon. Friend made detailed points about the legislation and raised concerns about the potential conflict between legislation and guidance and concerns about employees seeking to comply with the law while under pressure to release a body. It is important that we respond to all the points she made, and I will ensure that we do so. I end by again thanking her for raising this important, sensitive issue. Whether this practice is a one-off or more widespread —whatever its prevalence—it is important that it is dealt with properly and that this sort of thing never happens again.

Question put and agreed to.

Brain Tumours in Children

Caroline Nokes Excerpts

Tuesday 3rd September 2013 Westminster Hall

[Mr Raab]

My hon. Friend is right. It is particularly regrettable that we have such a delay in comparison with other countries if we could take simple steps, which would not even cost the taxpayer money, to reduce the delay through political will and co-ordination.

[Caroline Nokes (Romsey and Southampton North) (Con)]

I congratulate my hon. Friend on securing the debate. He has mentioned political will and co-ordination; does he agree that county councils and local education authorities can play a critical role in getting the HeadSmart cards out to schools? Will he join me in commending Hampshire county council, which has met Mrs Langton-Gilks and is working to ensure that the message is better disseminated to schools to increase awareness?

[Mr Raab]

My hon. Friend is bang on. I was going to come on to exactly that point, and I could not agree more.

Mental Health

Caroline Nokes Excerpts

Thursday 16th May 2013 Commons Chamber

[Caroline Nokes (Romsey and Southampton North) (Con)]

I add to those of other Members my congratulations to the right hon. Member for Sutton and Cheam (Paul Burstow) on securing this debate, and indeed to the Backbench Business Committee on having agreed the time for it.

I fear I shall stray into what some Members might regard as rather a niche area of mental illness. Some will recall that I led a Westminster Hall debate several months ago on the topic of eating disorders, raising the connection between eating disorders of whatever type and other mental illnesses.

One of the sadnesses I encountered in the run-up to that debate was the trivialisation of eating disorders even by some fellow Members, who made the point that they were not serious conditions but just the afflictions of silly teenage girls who needed to get a grip on their eating patterns. Far from it: in fact, eating disorders are one of the most prevalent mental illnesses. There are thought to be some 1.6 million sufferers in the UK. Anorexia nervosa is the most lethal mental illness: 20% of sufferers eventually die from it and a further 20% never recover.

It is important to recognise that the symptoms of a wide variety of mental illnesses such as low self-esteem, physical abuse and alienation from peers are common traits in a wide range of mental health problems, and are often particularly manifested in eating disorders. As I have said previously, the route map to an eating disorder is not identical for everybody, but similar traits and commons themes can be found. The same route map and traits can be found in schizophrenia and serious personality disorders such as bipolar disorder, for example.

I want to pick up and draw on as a point of contrast the issue of borderline personality disorder. I want to make the point, hopefully as succinctly as I can, that eating disorders are not the poor relation of more serious personality disorders and mental health problems; they are a serious condition of the psyche that should command far greater public awareness and, indeed, greater public spending.

To demonstrate the significant threat posed by eating disorders, one need only make a comparison with a more well-known and recognised mental health problem such as borderline personality disorder. BPD has a higher incidence of occurrence than schizophrenia or bipolar disorder and is thought to be present in about 2% of the general population. It has a phenomenally high rate of suicide and self-harm: 10% of BPD sufferers eventually commit suicide. Those mortality rates are augmented by disorder-related deaths from drug or drink abuse. One of the most well-known cases of undiagnosed BPD was that of the singer Amy Winehouse, who eventually died from alcohol poisoning.

However, anorexia nervosa—like BPD, it is thought to affect roughly 2% of the population—has a 20% mortality rate, which is nearly twice that for BPD. Yet awareness of this shocking statistic is not high; people simply do not know about it. That could be because, unlike BPD, those deaths do not predominantly come from suicide—although that is not uncommon—but happen many years later after the physical effects of anorexia have taken their toll. Many of the deaths occur from multiple organ failure or heart attacks, in addition to the straightforward and more well-known effects of the sufferer having too low a body weight for them to survive.

[Mr George Howarth (Knowsley) (Lab)]

I congratulate the hon. Lady on the persistence with which she has raised this issue and the trenchant way she argues her case. She will be aware that one of my concerns is type 1 diabetics who, by manipulating their insulin intake, can achieve rapid weight loss, which is in itself a form of eating disorder. Does she agree that the major problem confronting these people is falling between two stools? On the one hand they get physical treatment for the physical consequences of their rapid weight loss—organ damage and so forth—while on the other they have difficulty getting access to proper psychological or psychiatric services. Does she agree that the two need to be more integrated?

[Caroline Nokes]

I thank the right hon. Gentleman for that timely intervention. That is one of the key problems. Far too often in eating disorders, the treatment is focused on body-mass index and ensuring that the sufferers are physically well, but without necessarily addressing the underlying cause through therapies and treatments that deal with what triggered the condition. The right hon. Gentleman’s example of diabetics who manipulate their insulin intake is a particularly stark one. Anyone who has done work with diabetics knows that incorrect levels of insulin can lead to horrendous physical complications. Across the whole spectrum of eating disorders, there is far too much focus on physical and too little on mental well-being.

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

I would not normally intervene, but will my hon. Friend join me in paying tribute to the right hon. Member for Knowsley (Mr Howarth) for the great work he has done to raise with me and my Department this often unheard of, certainly unrecognised and very serious problem of type 1 diabetics with eating disorders? In considering how to tackle it, it is indeed important that we look at the mental conditions and problems my hon. Friend has identified.

[Caroline Nokes]

I certainly join the Minister in paying that tribute. I am delighted to hear her make the point that we must start addressing the underlying mental health conditions, when in too many cases the physical treatments are the sole emphasis.

I want to touch briefly on the significant impact eating disorders can have on future career opportunities and in the workplace. As I said earlier, eating disorders are often trivialised and generalised as being conditions affecting teenage girls. That is far from the truth, as the highest rate of increase is among male sufferers. In addition, many eating disorder sufferers are managing their conditions over many years or even decades. I am the first to emphasise that sufferers can be of any age and of either gender, although I acknowledge that the age at which an eating disorder is most likely to manifest itself is 17, and that it is most likely to do so in girls. It often occurs in academically high-achieving individuals who put themselves under immense pressure to be absolutely perfect in every way they can. That frequently manifests itself in a control of food intake. Those determined to put themselves under significant academic pressure also put themselves under massive physical pressure and wish to conform to a body ideal that is actually far from healthy.

I want to pay tribute to the work of April House in Southampton—a specialist unit that focuses on eating disorders in the city. I paid a very enlightening visit to the centre just over 12 months ago and met a number of sufferers, several of whom came from my constituency. Although April House serves the wider Southampton area, three of them were Romsey residents. They have kept in touch with me since my visit, and have emphasised that they have not only benefited from the work done at April House, but have undertaken other therapies.

I am very aware of the work of an organisation in Southampton called tastelife, which was set up by the families of people suffering from eating disorders. The aim was to move the focus away from the physical, and, through self-help groups, to encourage sufferers to talk about their issues, work through them with other people and concentrate on not just physical but mental wellness.

I pay tribute to the hon. Member for North Durham (Mr Jones), who drew attention to the stigma experienced not only by those who suffer from mental health problems, but by their families. Before the Westminster Hall debate, I was contacted by many parents, husbands and, indeed, wives of people with eating disorders, who told me that not just their relatives but they themselves suffered that stigma. A number of them believed that they must be in some way to blame for the fact that their relative, perhaps their child, suffered from an eating disorder. Many were suffering from massive levels of guilt and introspection because they felt they must have somehow caused it.

I have tried to emphasise during discussions of this topic that it is not possible to identify a single trigger, and that a parent cannot do anything to prevent the descent of a child into a form of mental illness, but what that parent can do is help. I was pleased to hear various Members stress the importance of having a parent or other relative as an advocate. In the case of eating disorders, it is almost inevitably the parent who will know the young sufferer best. I think it very important that we be prepared to talk openly about the subject and to move away from the stigma.

Many of those who attended the Westminster Hall debate will remember my hon. Friend the Member for Braintree (Mr Newmark) talking about a pea. He described how he had suffered at school from anorexia nervosa, and had decided to address his condition by seeking to tackle it one step at a time. The first step involved a single green pea on a plate, which he pushed around endlessly, trying to summon up the ability to eat it. His was a moving and interesting account, which gave those of us who had by then been debating the issue for some hours something on which we could really focus: that vision of a plain white plate with a single green pea on it.

Unfortunately the Minister of State, Department of Health, the hon. Member for North Norfolk (Norman Lamb), is no longer in the Chamber. I am sure the Under-Secretary of State for Health, my hon. Friend the Member for Broxtowe (Anna Soubry), will do an admirable job in responding to the debate, but the point I am about to raise is one that I raised with the Minister of State after it was raised with me by an organisation called Anorexia and Bulimia Care.

Once a young person suffering from an eating disorder has turned 16, they can choose to accept or refuse treatment and their parents no longer have a say. In order for them to be force-fed, they must be sectioned. That brings me back to what I said earlier about teenagers who are in the middle of academic exams and approaching A-levels. Being sectioned could have a significant impact on their future career choices.

I am not necessarily suggesting that we should insist that the parents must be in charge until a child reaches the age of 18. The Children’s Minister explained to me carefully and clearly about previous rulings in this place and in the courts which have granted people Gillick competence at an earlier age. I am not saying we should insist that that right be taken away from eating disorder sufferers. I think it important for us to work with health care professionals, and with mental health experts in particular, to find a solution to what I regard as a very knotty problem.

Among the sufferers to whom I have spoken during various meetings at April House and elsewhere, one sticks especially keenly in my mind. She was a lady my own age, and, although she was not one of my constituents, she came from Hampshire. She had suffered from anorexia for decades, and was incredibly frail. When I mentioned April House she shuddered visibly, because she regarded it as a place where she had been effectively force-fed. She had not come through the treatment successfully; here she was, 20 years on, still suffering from anorexia nervosa.

I always find myself—with good reason, I believe—on the side of the sufferer or the patient, and I am therefore not suggesting to the Minister that when it comes to the debate about whether parents should have the right to insist on force-feeding young people until they reach the age of 18, we should enter the fray. I recognise it is a very difficult area. However, I want to leave that thought with the Minister. I have raised the issue with her colleague the Minister of State, and no doubt I will raise it again over the coming months and years.

Sudden Adult Death Syndrome

Caroline Nokes Excerpts

Monday 25th March 2013 Westminster Hall

[Steve Rotheram]

Absolutely. What campaigners, or indeed anyone who is sensible enough to understand that we are in times of austerity, will say is that it is not for the Government to do everything. The example given by my hon. Friend of £40,000 being raised and the example of the OK Foundation, which has put defibrillators in all Liverpool schools, and of other organisations that are doing sterling work, prove that this is a partnership. This is something that charities can help with, but it does demand action from the Government.

[Caroline Nokes (Romsey and Southampton North) (Con)]

I congratulate the hon. Gentleman on securing the debate. Will he join me in congratulating small communities such as Lockerley in my constituency? I learned on Friday night that there is a defibrillator in the village hall, and I was told at a meeting there of, I have to say, predominantly quite elderly people that the instructions for the defibrillator were very easy to understand. They made exactly the point that the hon. Gentleman makes: the machine talks people through the process.

[Steve Rotheram]

Yes. Certain people expect us, as parliamentarians, to know everything about everything, but actually we do not know an awful lot about an awful lot. I hope that if it does nothing else, today’s debate and the publicity that will be generated through the campaigners will ensure that people are aware of exactly the point that the hon. Lady raises.

Backbench business

Caroline Nokes Excerpts

Thursday 14th February 2013 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

It is a pleasure to serve under your chairmanship, Mrs Osborne. I pay tribute to the Backbench Business Committee for granting this three-hour debate. I know that the Committee had to negotiate with the Liaison Committee so that we could hold the debate during eating disorders awareness week. This debate is therefore timely as well as important. Others in the House clearly agree, as can be seen by the number of hon. Members present. I know how difficult it is to commit to this slot on a Thursday afternoon, particularly when serious issues such as violence against women are being debated in the main Chamber. I am conscious that several Members are trying to perform the parliamentary feat of being in two places at once.

Eating disorders have not been debated in the House since 2007, a considerable time ago, yet over the course of the past few weeks I have become aware of several hon. Members and members of staff with family connections to those with eating disorders. Just this afternoon, I received an e-mail from an hon. Member’s chief of staff, who told me the moving and difficult story of his wife’s experience with an eating disorder. I pay particular tribute to my hon. Friends the Members for Enfield, Southgate (Mr Burrowes), and for Wells (Tessa Munt), and the hon. Member for North Tyneside (Mrs Glindon), who applied with me for this debate and have significant knowledge of and interest in eating disorders.

Some 1.6 million people in this country have been or are currently known to be affected by eating disorders. That is a massive number, equivalent to nearly 2,500 in every parliamentary constituency. However, the number of unknown sufferers is also of significant concern. The true number of those who suffer is not fully understood owing to the paucity of data relating to those who are not in the system. The Department of Health acknowledges that unreported cases of eating disorders are a huge problem, and the true figure could be higher than 4 million, which is 6.5% of the UK population, or about 7,000 people per constituency.

[Stephen Metcalfe (South Basildon and East Thurrock) (Con)]

Those statistics are staggering. As someone relatively new to the issue, I was not aware that the numbers were quite so large. How many of those people are men, and are there data identifying the proportion of sufferers who are men of whatever age, and the proportion who are young men?

--- Later in debate ---

[Caroline Nokes]

My hon. Friend raises an important point. It is thought—I emphasise “thought”—that about 11% of sufferers are male, but interestingly, they are among the fastest-increasing groups.

The figures that I have given do not take into account the families of those who suffer, meaning that the social footprint of eating disorders is breathtaking. Be assured—to refer back to my hon. Friend’s point—that sufferers are by no means all teenage girls. That is one of several myths about eating disorders that need to be exposed.

[Mr Barry Sheerman (Huddersfield) (Lab/Co-op)]

A constituent of mine, Cherie Hinchliffe, wrote to me saying how pleased she was that the hon. Lady was holding this debate. She wanted to say that eating disorders destroy families, and that GPs do not know enough about them. Doctors, dentists, local hospitals and schools do not know enough about them; the media know about them but report them in a terrible way. Does the hon. Lady agree?

[Caroline Nokes]

The hon. Gentleman is absolutely bang on. Many parents of sufferers have commented to me that they feel their GPs do not understand enough, and nor do schools and colleges. I will cover all the points that he raised later.

The fastest increase in eating disorders has been among young men. As well as facing the mental health problems typically associated with female sufferers, they are coming under more pressure than ever before to conform to a stereotype of the body beautiful. Imagery in magazines and advertising plays a significant role.

Of particular concern is the prevalence of eating disorders among gay and bisexual men, who are twice as likely to be sufferers as heterosexual men. I understand that eating disorders in gay and bisexual men are even more linked to concerns about body image than in heterosexual male or female sufferers. Although males account for only 11% of the total of those with eating disorders, the percentage is increasing, and we should be conscious of that. In the 10 years up to 2011, the number of hospital admissions for men suffering from an eating disorder rose by 67%. Furthermore, there is evidence that undiagnosed disorders are even more commonplace among men than among women. The scale of the hidden problem could be immense.

It is not only the young who are afflicted, although there is certainly a trend towards eating disorders manifesting at an earlier age than ever before. I was particularly moved by my contact with a woman whose daughter started suffering from anorexia nervosa at 10 years old but was not diagnosed for years, as her GP and other medical practitioners thought that she was too young to have the condition. Eating disorders are also being diagnosed much later; some sufferers present in their 50s and 60s, and there is evidence that increasing numbers of sufferers manage their conditions not just over the average of seven years, but for decades. An increasing number of people in their 30s and 40s have lived with their eating disorder for more than 20 years.

“Eating disorder” is a term used to describe a wide variety of conditions, some well known and others far less so. Obviously, the best known and most recognisable is anorexia nervosa, in which a sufferer intentionally deprives themselves of food and has a body weight at least 15% below the recommended minimum. People with anorexia have an extremely distorted view of their own body and a fear of gaining weight. However, anorexia is but one condition among several. Eating disorders also include bulimia, which in many cases is harder to detect, as sufferers may maintain a normal-looking weight. However, it is achieved through bingeing, purging and fasting, and like anorexia it can cause long-term damage.

From my research for this debate and my conversations with many sufferers of eating disorders, I have learned of many other conditions: binge eating; compulsive overeating; food neophobia, an extreme fear of trying new food; and compulsive over-exercising. A year ago, I met a young man who ran up to 30 miles every day. There is also selective eating: sufferers eat only an extremely limited range of foods.

Bulimia is a disorder linked closely to low self-esteem, emotional problems and stress. The sufferer may think constantly about calories, dieting and ways of getting rid of food that they have eaten. It is actually more common than anorexia, but it is more hidden, because people with bulimia usually maintain an average or just-above-average weight. Bulimia can go unnoticed for a long time while sufferers feel incredibly ill and unhappy.

Those with bulimia become involved in a cycle of eating large amounts of food and making themselves sick, cutting down or starving for a few days, or trying to find other ways to make up for the food that they have eaten. It can cause them to become so hungry that they eat large amounts of food because their bodies crave nourishment. Some people do not vomit, but instead take laxatives, which are especially dangerous. Just because bulimia does not cause the extreme weight loss of anorexia does not mean that it is less serious. Sufferers need help and support, as the side effects and consequences can be serious. I appreciate that I have given a very rapid description of some eating disorders, for which I apologise, but I am sure that other Members will wish to discuss some of them in more detail.

I do not wish to generalise, and I apologise if my next remark causes any offence, but in many instances, due to the extreme control with which sufferers approach their food consumption, eating disorders are a type of addiction. However, unlike addictions to alcohol or narcotics, a fixation with how one controls one’s calorie intake must be faced and addressed every day of a sufferer or recovered sufferer’s life. They cannot simply remove food from their lives in the way that others might develop strategies to avoid alcohol, for instance. They must eat to live. For sufferers, by necessity, that battle will occur three times a day for the rest of their lives.

Eating disorders are not trivial conditions. Anorexia kills about 20% of sufferers, and 40% never recover. It is the single biggest killer of all mental illnesses. It has been dismissed for too long as a problem of teenage girls who just need to get a grip on their eating patterns. That is far from the truth. Eating disorders are serious, potentially fatal, mental illnesses, which, even long after a sufferer has recovered, can have long-term implications for their health. The impact on fertility is well known, but there are many other serious implications. Abnormal heart rhythms are commonplace, even in teenagers with eating disorders. In fact, heart damage is the most common cause of hospitalisation for those suffering from eating disorders, but the kidneys and liver are also badly affected, and reduction in bone density leading to osteoporosis can happen in sufferers, even before there has been any physical manifestation of a problem.

As chair of the all-party group on body image, I have been privileged to work with a number of leading charities supporting those suffering from eating disorders and their families. I pay particular tribute, during eating disorders awareness week, to Beat; many of its members are in the Public Gallery. I also pay tribute to Anorexia and Bulimia Care and the Succeed Foundation. I vividly recall hearing the moving stories of ABC members at a reception hosted by my hon. Friend the Member for Wells a few months ago. These charities all do fantastic work with sufferers and their families, and to ensure that the wider community—Members of Parliament, the medical profession, schools, colleges and universities—have a better understanding of the signs of eating disorders, and how to help those in the grip of such a disorder and those who may be at risk. They also work with the media to ensure that they understand the importance of the portrayal of responsible images on advertising and in editorials.

[Stephen Metcalfe]

My hon. Friend is making a powerful, moving speech. These issues have been discussed and debated before, but there seems never to have been any progress in addressing the issues and tackling the problems. Why does she think no progress has been made in the past 10, 20 or 30 years? These things were known about, yet there seems to have been no move forward.

[Caroline Nokes]

That is a difficult question. Later, I may even suggest that we are moving backwards. Unfortunately, these are hidden conditions that the media and others have chosen, occasionally, to trivialise. They are not trivial and they need much higher priority.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I congratulate my hon. Friend on securing this debate. On the subject of this being a hidden illness, in recent times mental health has risen up the agenda, and attention has been given to the topic in the House, which has shone a light on the issue of mental illness. Why, even in the field of mental illness, has this area in particular not received attention, when its mortality rates are the worst?

[Caroline Nokes]

My hon. Friend makes an important point about the mortality rates, compared with those for other mental illnesses. In this place, we have made great strides in being far more open and willing to discuss mental illness. This illness is hidden, and has not received priority or generated the attention that it so desperately deserves. It is incumbent on all of us to ensure that the Minister, who I am sure is listening, gets that message loud and clear.

[Jackie Doyle-Price (Thurrock) (Con)]

Whenever we approach a public health concern such as this, one of the biggest things we have to do is educate the public. The media are an important partner in that. Does my hon. Friend agree that the media’s obsession with the cult of celebrity, and the focus on that, is holding us back on a significant public health issue?

--- Later in debate ---

[Caroline Nokes]

My hon. Friend is aware of the work that I do with the all-party group on body image. We have been sending that message to the media time and again. We need more realistic images in magazines and publications. Shortly, I will quote a 21-year-old sufferer from anorexia who made that point to me powerfully.

The causes of eating disorders are complicated and varied, and although there may be broad similarities, it is dangerous to suggest that any two individuals will have identical experiences or paths into illness or recovery. I know from talking to sufferers, experts, charities and families that genetics, low self-esteem, stressful life events such as death or divorce, academic pressure and cultural and social pressures, can all contribute. For every sufferer there will be different triggers or different combinations of triggers. It would be naive to suggest that a single cause could be identified. However, an issue that brought me to this debate is the social pressure to conform to a stereotypical view of the ideal body image, so ably demonstrated to us in advertising and magazines.

Last November, I attended an event in this place organised by Anorexia and Bulimia Care, and was impressed by the moving account given by Katie Waters, a 21-year-old student, who told MPs:

“Six years ago the eating disorder well and truly look over. The stress of GCSEs in a high-achieving all-girls…school meant my weight dramatically plummeted and I…developed anorexia.

During this time I did everything—speech and drama exams, piano exams, I sang in the choir, I was in school plays, actively taking part in church activities and of course was buried under a mountain of homework. I constantly pressured myself to be perfect at absolutely everything.

But the trouble is, when it comes to weight and body size, the images I frequently saw in the media of apparent perfection were unattainable. We have only just been recently made aware in the last few years of the transformation airbrushing and digital photo techniques do to women’s bodies in the media. So what I was seeing from such a young, vulnerable and impressionable age was actually not a real person.”

To those who dismiss the impact of the images we routinely see in the media, I hope the words of Katie, and other sufferers like her, will hit home. Although I do not claim that such images are causing eating disorders, they are contributing to them, and editors and advertisers can work to portray more realistic and positive images.

I should like briefly to mention the relatively new phenomenon of pro-ana websites. First appearing in the 1990s, these sites are numerous and are often characterised by a frequent migration to different web addresses or blog sites. Ana, or thinspiration, is portrayed on many of these sites as not a serious mental illness, but a lifestyle choice, and although those supporting the sites claim that they can provide the only forum for socially isolated sufferers, solid academic studies support the claim that they do damage.

[Claire Perry (Devizes) (Con)]

I hope that you will accept my apologies for joining the debate late, Mrs Osborne. Does my hon. Friend agree that the progress we are making on making it much easier to filter out pornography, violence, abuse, anorexia and self-harm from the family home is welcome?

[Caroline Nokes]

I commend my hon. Friend on the work that she is doing in that area. I sincerely hope that we see some progress on that, so that these websites, which are proliferating—there is evidence of a 470% increase in just one year, between 2006 and 2007—can be prevented from being accessed from family homes. US studies have shown a clear correlation between increased body dissatisfaction and viewing such sites.

We live in a complex, changing world where higher numbers of people than ever suffer from mental illness, and so it is with eating disorders. It is not just the number of sufferers, but the severity, that is increasing. What would have been considered an eating disorder 20 years ago might now be regarded merely as a bit of disordered eating. I do not say that in any way to dismiss the seriousness of disordered eating, but to demonstrate that the conditions now have to be a great deal worse to be recognised as such, and to make a sufferer a priority for treatment. That is one of the serious issues that I would like to mention.

In my home city of Southampton—not in my constituency, but in that of the right hon. Member for Southampton, Itchen (Mr Denham)—is April House, a unit specialising in eating disorders, which I have had the privilege of visiting, and where I met service users and health care professionals. I attest to the outstanding work done there. Some of the service users and staff are here today. I admire their courage and determination.

I agree with the firm message that I received from staff at April House. With all eating disorders, there is a critical window of opportunity when a sufferer has been diagnosed, wants help, has acknowledged that they have a problem, and are reaching out for the assistance they desperately need. That opportunity can easily be lost if help is not available at that time.

[Lilian Greenwood (Nottingham South) (Lab)]

The hon. Lady is making a powerful speech. I was concerned when I received an e-mail from one of my constituents, a student nurse, who wrote:

“I am currently on a mental health placement and two of my clients have eating disorders of varying degrees, however cannot seek support for their eating disorder due to cuts in services.”

Does the hon. Lady share my belief that, having raised awareness of eating disorders and encouraged sufferers to seek help, we must not then fail to provide the support and assistance that they need?

[Caroline Nokes]

The hon. Lady makes exactly the point that I am coming on to: it is critical that when sufferers feel that they can reach out for help and acknowledge that they have a problem, the help is there for them. A delay of six to nine months can be dangerous—or, indeed, fatal.

[Jackie Doyle-Price]

Is my hon. Friend satisfied with the level of knowledge among medical professionals? Is there a job to be done in raising awareness of what they should be doing and of the signs that they should be looking for among sufferers of these disorders?

[Caroline Nokes]

I have been struck by the number of times that relatives of sufferers have contacted me to make the point that their family member was slow to get a diagnosis, or to say that the GP dismissed the eating disorder as nothing more than a teenager being a bit fussy about their food. It is critical to raise awareness, not only among the wider community and the media, but among our general practitioners, because we need these disorders to be identified earlier so that damage to growing bodies, in the instance of young people, does not become permanent.

[Stephen Metcalfe]

As well as the medical profession being aware of these conditions and the first signs, should not parents have some knowledge of the indications, so that they can help their children earlier, before the condition gets too serious?

[Caroline Nokes]

One of the messages that I have received from parents is that they already feel enormous guilt, in some instances completely unjustifiably. They feel shame for what is going on with their child, and as if they are somehow to blame. They are not, and I find that in the majority of cases, parents were the fastest to identify the condition. They instinctively knew that something was wrong with their child, even though they might not have been able to put their finger on what exactly it was. I have heard some terrible tales from parents, which I will come on to—I assure you, Mrs Osborne, I am getting towards the end—about the responsibility and burden placed on them. I have even heard about parents who have been told that it is their fault. It simply is not.

We do not fully understand what causes eating disorders; it is complicated. All the parents I have spoken to have done the most fantastic job in supporting their children. As one sufferer’s mother said to me on the phone just yesterday, there is nothing that she would not have sacrificed to get her daughter the help that she needed. Had the mother been able to buy private health care, she would have sold her house to do it, so desperate was she for her daughter to get well.

I know how long sufferers have had to wait to gain admission to April House—something that has been emphasised to me incredibly strongly—and the picture from around the country is that the average wait from diagnosis to treatment in a specialist unit can be as long as nine months. For sufferers, that is simply far too long. As we move from primary care trusts to clinical commissioning groups, it is imperative that awareness of the scale of the problem is uppermost in the minds of GPs, who will be responsible for commissioning the relevant services.

I have mentioned briefly one significant theme, but I would like to mention it again. It is a message that has come from the parents about the impact on families. The effects are many and varied, and certainly include huge feelings of guilt and despair, and lack of comprehension of why this has happened to their child, or why an individual might choose to deprive themselves of the necessary nutrition to lead a healthy life.

[Alison McGovern (Wirral South) (Lab)]

I apologise to the hon. Lady, who is making a brilliant case on behalf of the sufferers of eating disorders, for intervening on an excellent speech. Given the shame and guilt she has mentioned, which are big factors, does she agree that it is fantastic that constituents of mine have got in touch with me to ask me to attend this debate? All of us have constituents who have got in touch with us on this issue and have talked about their experiences. Their coming forward helps to dispel some of those feelings, and some of the myths and rumours surrounding these conditions. Will she congratulate them with me?

[Caroline Nokes]

I thank the hon. Lady for that intervention. One word that keeps being used is “stigma”. She is absolutely right to highlight the bravery of individuals, some of whom were perfectly happy to be named; when I told Katie Waters that I wanted to quote her, she was over the moon that I was going to quote her in Parliament. Others did not want to be named but still wanted to tell their story. They have all been phenomenally brave, including those in this place who have contacted me and talked about their personal stories.

I have had mothers contact me to tell me that when their child was diagnosed with an eating disorder, they were accused of abusing their child. The assumption was made that they must have harmed their child for her or him to have developed an eating disorder. I am not saying that that never happens, but from my experience, the parents and families of people with eating disorders have been caring, loving, supportive, desperate for knowledge and help, and in many cases prepared to sacrifice absolutely everything for their family member to be well again. I therefore pay tribute to charities such as Beat and ABC, which have recognised that this is not a condition of the individual, but affects entire families, wider networks, friends and colleagues.

Beat is working in partnership with Student Run Self Help, which runs a number of support groups in universities throughout the country. Both organisations have heard of a number of cases in which students have not been able to access treatment, or have been able to access only intermittent treatment, due to a lack of co-ordination and flexibility on the part of GPs and eating disorder treatment services at their university and in their home location. They have asked me specifically to highlight to the Minister the serious problem with 18-year-olds going off to university. We know that people are most likely to develop an eating disorder at 17, so that is a vulnerable age.

What sufferers need above all else is continuity and stability of treatment, which Beat originally thought could be achieved by enabling people to register with two GPs at one time. However, after consideration was given to who would have overall financial and clinical responsibility for the patient, discussion turned to the proposal that the home GP could have those responsibilities. This should encourage greater communication between the home GP and the GP with whom the student is registered as a temporary patient at university. In addition, it is likely to be argued that the student should be able to register with more than one eating disorders unit—one at home and one at university—so that they can receive the necessary care during both term time and the holidays.

I am conscious that other Members wish to speak and my contribution has been somewhat lengthy, so I shall conclude my remarks with a tribute to one of my constituents, whom I first met at April House this time last year. She has gone out of her way to keep in touch with updates about what she is doing to raise awareness of eating disorders. She has certainly improved my knowledge and understanding, and is shortly to take part in a charity sky-dive to raise funds for eating disorders awareness. What struck me about Becky was her willingness to open up about her battle with anorexia and some of the stark truths.

Hampshire is a fortunate county, with excellent schools and sixth-form colleges. Even in schools and colleges rated as excellent, however, eating disorders can flourish. Transition from school to college can be difficult for many, and at times of change, stress and pressure, eating disorders can frequently manifest themselves. Even where teachers and head teachers are good, concerned and caring, and where pastoral care is superb, young people can fall victim to these disorders. I hope that in some small way this debate has helped to raise awareness and understanding in this place. I sincerely thank all those in the Public Gallery for attending, and I thank colleagues for their contributions this afternoon.

--- Later in debate ---

[Caroline Nokes]

I welcome the right hon. Gentleman raising diabulimia, about which I knew absolutely nothing prior to calling this debate. A constituent of my right hon. Friend the Secretary of State for Communities and Local Government contacted me to inform me that treatment of the condition is incredibly rare, and they were aware of only one hospital in south London that specialises in it. Can the right hon. Gentleman confirm whether that is correct?

[Mr Howarth]

The hon. Lady is correct. I intend to address that issue when I bring my comments to a close, and I will make suggestions for what we need to do.

The consequence of people being treated either by a diabetologist who does not understand eating disorders, or by an eating disorder specialist who does not understand diabetes, is that they can be signposted to an unsuitable service altogether, or unforgivably, they will not be taken seriously when they have a serious problem.

An example I have been told about involved a young woman sufferer who was told that she was too heavy. That is not to say that she was heavy; she was very light, but she did not meet the criteria for being light enough to have an eating disorder, and was consequently told that she did not qualify for any support. The advice that she was given was that she needed to relax about food. Anybody who knows anything about diabetes knows that the relationship diabetics have with their carbohydrate intake is crucial to their well-being, so to say to a diabetic, “Go away and get more relaxed about eating”, could put them in a position where their life is threatened. Subsequently, the young woman concerned had to be admitted as an emergency case to hospital with ketoacidosis, which, had it not been treated quickly enough, would have been fatal. That was somebody who had presented themselves in the health system, looking for help, but was told to go away and get a better relationship with food.

DWED has some aims that I hope Ministers can address, and I shall go through those now. First, it wants to establish the principle, which I strongly support, that no diabetic with an eating disorder should be misdiagnosed or told, “There is nowhere to put you”, which is what is commonly said to them at the moment. That comes back to the point made by the hon. Member for Romsey and Southampton North.

Secondly, for type 1 diabetics with eating disorders—what I have termed as diabulimia—the condition needs to be properly recognised as a serious and complex mental health problem. I do not think that it is controversial for the hon. Lady to refer to it being a mental health problem, because although, in all the cases that she gave, there are serious physical consequences, the springboard often relates to mental health, relationship with body image, and so on.

Thirdly, those who seek treatment should receive the correct treatment with respect and compassion, on the basis of a multidisciplinary approach. In the example that I gave, there was not enough expertise in one specialism to be able to satisfactorily deal with the problem. Such an approach requires the Department actively to promote an understanding of the problem, so that health professionals catch on to what is happening. Protocols probably need to be in place, so that when somebody presents themselves with such a condition, health professionals know what to do.

The only people raising this problem, apart from me in today’s debate, are DWED, who work together with other bodies, such as Diabetes UK. DWED currently exists on an income, in the last financial year, of £9,000, which is not even enough to employ one full-time member of staff. DWED operates on the basis of having previous sufferers who are volunteers, under the co-ordination of Jacqueline Allan, who I mentioned earlier. I do not know whether it is more appropriate for support to come from foundations or the Government, or somebody else. I am not talking about needing hundreds of thousands of pounds, although I am sure that DWED would welcome that, but some way needs to be found to support the one organisation that is campaigning on, and raising and dealing with the problem. Given the importance of its unique role, I hope that the Government can find some support—not only for DWED, but for the issue as it exists across the health service.

Finally, just as it is vital that health professionals take a more multidisciplinary approach to this and other eating disorders, it is equally important that the Government take a more joined-up approach. I could have made the same criticism of the previous Government, and I realise how difficult it is to get a joined-up approach to eating disorders and many other things. However, on medical cases, there needs to be co-operation between different Departments, because a stronger push is required on the issue of body image and how that is dealt with. Perhaps it is not best dealt with by the Department of Health, but at the same time, some of the health issues involved need to be addressed.

--- Later in debate ---

[Norman Lamb]

I will talk about that later. In so many respects, we have problems with people falling through the gap between children and adolescent mental health services and adult services, and that is matched in other areas, as well. There is a need to deal with this. The draft Care and Support Bill deals with the transition from teenage to adult services. I will return to that matter. I thank the hon. Lady for her intervention.

A generation of young people is growing up depressed and unhappy with their relationship with food. I want to tell hon. Members about a case in my constituency. Charlotte Robinson was a bright, outgoing young woman who was about to secure straight As at A-level and had dreams of going to Cambridge—between Duke of Edinburgh’s awards and learning to fly helicopters—but tragically, Charlotte was a victim of anorexia, stolen from her family in her prime, with her whole life ahead of her. That is what I meant when I said that for some, thankfully, there is life after anorexia—but not for everyone.

Charlotte’s parents, Christopher and Pauline, who are remarkable people, have campaigned tirelessly to help others. Pauline even ran the London marathon in pink wellies, such is her commitment. They are fantastic people and their attitude was that they did not want other families to experience the same horror that they have gone through, so they have been determined to change things in their county of Norfolk. They discovered that there was no specialist commissioned service at all in their own county. This is what we find. Hon. Members have talked about the enormous gaps in services around the country.

As a result of Christopher’s and Pauline’s fantastic determination, there is now a specialist commissioned service, but it took their efforts to achieve it. Their efforts have helped to fund local centres and a helpline in Norfolk, working with NHS Norfolk and the charity Beat, which I have mentioned. Their focus is on early intervention, helping people like Charlotte—helping children, young people and adults as soon as they need help. Charlotte’s decline was dramatic and rapid and the wait, although nothing like the nine months that we have heard about, still was too long for her.

Speedy access and early intervention are critical. That is why our mental health strategy prioritises early intervention and demonstrates how timely action can help.

In many cases, eating disorders stem from low self-esteem or are linked to stress and emotional problems. That is why our support for local organisations in improving mental health services locally is so important. Our mental health and suicide-prevention strategies both include actions that local organisations can take to improve mental health in their areas: ensuring that children and parents get mental health support from birth; that schools and colleges promote good mental health, alongside targeted support for those at risk of mental health problems; that public services recognise people, of all ages, at risk of mental health problems and take appropriate, timely action; and that health services step in early if there is psychosis or a crisis, to stop more serious problems occurring.

The right hon. Member for Knowsley and my hon. Friend the Member for Romsey and Southampton North raised the problem of transition—moving from being a young teenager at home to a young adult. Often the problem is exacerbated by moving to university, where people suddenly lose contact with services that might have been available to them at home. As my hon. Friend mentioned specifically, that is where things can break down. Away from friends and family, in a new and often stressful environment and, crucially, registering with a new GP, young people can often enter a spiral of decline. The problem must be addressed.

I will now outline some of our ambitions for services. From this April, the NHS Commissioning Board will commission specialist services for eating disorders for adults and children. Having one specialist group to ensure that specialist services are commissioned everywhere has the potential to improve the position in many parts of the country where such services are inadequate or missing. The Commissioning Board will develop a national service specification and encourage better planning, access and outcomes, helping to bridge the gap when someone moves and raising the level of care throughout the country.

We want clinical commissioning groups to commission services with early intervention in mind. We also expect adult social services to work alongside CCGs to focus existing support on early intervention, integration, personalisation and recovery. Social services have a role to play, involving service users as equal partners in commissioning and monitoring services, ensuring that services are designed for the people who use them.

Public health services can articulate the many benefits of good mental health and, because of their pivotal role in the new system, they can talk about mental health directly with members of the public. The transfer of public health to local government, alongside children’s services, social care and other services, with a seat on the health and wellbeing board, potentially gives it a prominence that it has not had in the past. The funding settlement for public health has also surprised many people, with significant real-terms increases this year and next. There is great potential for a focus on public mental health in a way that we have not had in the past, so I hope that we can take advantage in the best possible way of that opportunity.

Of course, the problem cannot be fixed by tweaking the system. A huge stigma remains around mental health, which means that in too many cases children and young people are not getting the support that they need. That is particularly the case with eating disorders, and people affected often feel marginalised and excluded, unable to talk about their suffering. The problems can be compounded if the sufferer is a man or suffering from a less stereotypical but no less serious eating disorder, such as atypical anorexia or a binge-eating disorder. Personal testimony and the courage of individuals in speaking out send a powerful message, and challenge that stigma.

The Department of Health is therefore funding Time to Change, a brilliant campaign that was started under the previous Government but continues now. We are providing £16 million between 2011-12 and 2014-15, the first time that Time to Change has had central Government funding. It will also get a further £4 million from Comic Relief, the second time that that charity has awarded its largest UK grant to Time to Change. Run by the charities Mind and Rethink Mental Illness, Time to Change is England’s most ambitious programme to end the stigma and the discrimination against mental health through activities ranging from education to publicity. It aims to reach 29 million members of the public, explaining mental health and helping them to understand conditions, including eating disorders, that might at first seem alien or scary.

I was delighted that two young women from Time to Change came into the Department of Health recently to speak about their own experiences of mental health. They spoke about how talking about their own mental health had empowered them. One said that it had, “given me my life back”. Their stories were both moving and inspiring and I pay tribute to all those who find the courage to open up and to talk to others. Time to Change aims to increase the confidence of 100,000 people with mental health problems, helping to give them the self-belief that they need to recover.

The Time to Change campaign also works with schools to support children and young people facing problems of integration and bullying that can be caused by mental health issues. I have not only signed up to committing the Department of Health to be an exemplar employer on mental health, but made the commitment to try to get every other Department to sign up as well. We cannot encourage others to behave in the right way unless we practise what we preach. That is a challenge for Government, and I have not yet achieved that aim, but I am determined to pursue it.

The reasons for eating disorders are complex, as has been made clear in the debate this afternoon. Biology and genetics play their part, but so too does the pressure from our celebrity culture and the media. A recent controversy ignited by stick-thin La Perla lingerie models erupted only last week, and it is important to send out the message that organisations that do this sort of advertising have a responsibility; they cannot opt out. Government cannot do everything on its own. Everyone in society has a responsibility to get the right messages out. I was pleased to hear the shadow Minister’s reference to Vogue, which has made a good commitment to avoid getting out the wrong images.

[Caroline Nokes]

This is an important point. Last week, we had a controversy about La Perla using stick-thin models for its lingerie but, before Christmas, Marks & Spencer used some “larger ladies” in lingerie advertising. Some of them were almost a size 12. What would the Minister say to those in the health care professions who cited that advert as Marks & Spencer promoting and celebrating obesity?

[Norman Lamb]

I take the point and I am grateful for that intervention. We have to think before we speak on these things, to ensure that we do not send out confusing messages. There is a problem of obesity in our society and it is causing serious concerns about a drift towards type 2 diabetes and a whole series of health consequences, but let us be balanced in what we say and not confuse youngsters in such an unhelpful way. In the compelling words of Marya Hornbacher, in her memoir of anorexia and bulimia, we are “turning skeletons into goddesses” and teaching our children and impressionable young people to hate their own bodies. That is why I am so grateful to the hon. Member for Romsey and Southampton North and members of the all-party group on body image for their tireless work in addressing the causes and consequences of body image anxiety. Through the Government Equalities Office, the coalition Government are conducting our own body confidence campaign, with three main aims: to raise awareness about body image and encourage a more open and public conversation; to promote a world where all healthy body shapesare represented, and people recognise that their value is far more than merely their physical appearance; and to widen the definition of beauty to include all ages, ethnicities and healthy sizes.

Pro-anorexia and pro-bulimia websites, which were mentioned by the shadow Minister, the hon. Member for Romsey and Southampton North and others, have grown significantly in recent years and are represented on sites such as Facebook. They do not cause eating disorders, but they play a significant role in exacerbating and reinforcing illness. Limited research is available, but what there is shows us that a significant number of teenage girls in particular visit such sites, including a substantial proportion of young people who already have an eating disorder. Disturbingly, nearly all of them report learning new weight-loss techniques from the sites. I am extremely concerned about those sites but cannot take legal action against them as they are not in themselves illegal and might also be hosted overseas, but we continue to explore other, non-legislative courses of action. For example, we recently worked with a media agency to run advertisements directing youngsters to more appropriate sites, because there is much good information out there on the internet, as well as dangerous sites.

A couple of weeks ago, I met security companies such as McAfee and Symantec, and urged them to work with groups such as the Samaritans, Beat and BeatBullying, as well as internet service providers, and to sign up to a concordat, speeding up the reporting of harmful content and blocking harmful websites. They told me they would explore such a concordat. In turn, the Government would be willing to facilitate and support such an initiative in any way we can.

We cannot place all the blame at the feet of the media. That would dramatically underestimate the scale and nature of the problem, but it is something we must challenge. Education and early intervention, keeping an eye out for symptoms, and providing relevant support are simple things that can dramatically increase the chances of recovery.

Sufferers have asked us to listen. My message to them is that we are listening. As I said, I have had personal experience from my work in Norfolk of the horror of this condition and its impact on families. While I am in this job, I want to do everything I can to help others to address this very serious problem and to improve the lives of those who are affected by it.

[Caroline Nokes]

I welcome the opportunity to summarise briefly. We have had a full and interesting debate. I pay particular tribute to my hon. Friend the Member for Basildon—I am sorry, I mean Braintree (Mr Newmark). I am trying to send him to a different part of the country. Everywhere in Essex begins with B! His contribution was fantastically personal and moving. I am convinced that many other hon. Members in the House have had personal experience of eating disorders in their families or personally, and we must, as the Minister said, take such disorders more seriously. I was delighted to hear his words this afternoon about his personal commitment while he remains in his job—long may that be so.

I thank all hon. Members who spoke. Many were unable to be here for the full time, but they came and went. Two important debates are taking place in the House this afternoon, which were also granted by the Backbench Business Committee, so I am conscious that we have been competing with others for parliamentary time and attention. I want to take this opportunity to reiterate some of the key points that we have made.

There must be continuity of care. We heard the important point about the transition from child services to adult services, and how some sufferers can fall through the gap. Equally, that transition, whether from school to college or college to university, may be a tipping point for those who suffer eating disorders when they need continuity of care. My strong argument to the Minister is that there must be flexibility in both specialist services and GP services so that if a young person moves away to university, there is joined-up thinking and treatment, and no moment of crisis when a young person does not get the care they need.

We have heard from hon. Members about the impact of eating disorders on male sufferers. They are the fastest-growing group, but that does not detract from the fact that clearly the majority of sufferers are women, and the vast majority are young women.

One stark statistic that I want to close on is that 20% of anorexia nervosa sufferers die from that condition. We must do more to ensure early intervention so that that number falls.

I thank the Minister for his time, and you, Mr Walker, for chairing the debate. I also thank all hon. Members who took part this afternoon.

[Mr Charles Walker (in the Chair)]

Thank you, colleagues, for such an informative debate, which was Parliament at its very best.

Question put and agreed to.

Mental Health Care (Hampshire)

Caroline Nokes Excerpts

Wednesday 18th April 2012 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

I pay tribute to my parliamentary neighbour and hon. Friend the Member for New Forest East (Dr Lewis), not only for the outstanding work he has done to highlight this important issue, which is of grave concern to his constituents and to many residents of southern Hampshire, but for his tireless work to analyse bed availability within the Southern Health trust area. From what he has told us this morning, there can be little doubt that the work done to analyse and challenge the statistics of bed usage, including the somewhat confusing question of what is an available bed and what is simply a leave bed, has taken a great deal of time.

What many of my constituents and other local residents want is to make sure that the outcome of the process is correct for local users of adult mental health services. As my hon. Friend has correctly indentified, this is not an argument about the philosophy of how best to care for those in need. There will always be a need for acute in-patient beds, although we certainly believe there is potential to improve arrangements and thus avoid in-patient admission for those who can be successfully and safely treated in the community. However, what has not been clarified throughout this process is the number of beds that there are in the system and the number of beds that are needed. My hon. Friend has certainly done sterling work over the past few months analysing bed usage, and I do not intend to repeat any of those statistics—we have heard in great detail what may or may not be available. Suffice it to say that, in the past six months, there have been many occasions when there have been no vacant beds across the service.

On top of that, there are many valid questions from service users in my constituency about the choices made about which beds should remain available in the locality. At the start of the year, I attended a meeting organised and hosted by my hon. Friend to learn more about the concerns of local service users and to hear at first hand how important the provision at Woodhaven is to local people, their families and their carers. Given the location of Woodhaven and the distribution of mental health beds across Hampshire, it is inevitable that this closure will impact on not only the constituents of my good Friend, but those of several Members across southern Hampshire. As my right hon. Friend the Member for New Forest West (Mr Swayne) has indicated, mental health problems are no respecter of, and trust boundaries are not contiguous with, constituency boundaries.

Of course, when discussing reconfiguration of health services, frequently the focus is on location, and service users will emphasise the distance of travel to get to a facility, the availability of public transport and how convenient it is for loved ones to come and visit. Interestingly, when discussing Woodhaven, that was not the message I received from service users or their families. Indeed, if we were to analyse the journey times and the ease of access, it is possible to argue that, for the vast majority of my constituents, Woodhaven is simply not as accessible as alternative provision at Melbury Lodge in Winchester. Woodhaven is a great deal further away for many people, and the public transport links are much poorer.

However, location has simply not been the focus for any of my constituents who have had experience of either Woodhaven or Melbury Lodge, or indeed both. Far from emphasising convenience, my constituents’ concern has been regarding the quality of provision. The questions they have posed have been eminently sensible. Why is it proposed to deprive acutely ill patients of the benefit of 24 modern en-suite beds that were opened only eight years ago? Why would the trust choose to keep the facility that is not as good, that does not afford the same level of privacy and dignity and that has no en-suite facilities at all? I would like to highlight the comments made to me by just two constituents who have contacted me. The first wrote:

“My wife has been an inpatient at both Woodhaven and Melbury Lodge. Melbury Lodge isn’t anywhere near the standard of Woodhaven. Woodhaven is very pleasant, with a lovely atmosphere. Melbury Lodge by comparison is very intimidating with a lock down high security approach. This may be appropriate for some of their patients but for the majority it’s just scary.”

The second constituent provided me with a very detailed account of his mental health issues, a suicide attempt in 2008, and his own stay at Woodhaven under section. He wrote:

“Having been an inpatient at Woodhaven I would emphasise the privacy. Having a breakdown surrounded by others who do not respect your privacy is very difficult. When I was in acute crisis I desperately needed short term care and support, it would be a disaster for local service users if those high quality short term beds were lost in favour of a less good facility, or worst case scenario, no bed at all.”

I pay tribute to one of my hon. Friend’s constituents, who made a lasting impression on me at the meeting mentioned earlier. He had been an in-patient under section at both Melbury Lodge and Woodhaven and, again, it was the privacy aspect he emphasised. While an in-patient at Woodhaven, he felt he had retained his dignity by being able to have his own bathroom. That clearly made an enormous difference to him personally, and I think we can safely draw the conclusion that a feeling of having some personal space and privacy can greatly improve the overall sense of well-being and aid the chances of a swifter recovery.

I have absolutely no doubt that the facility at Woodhaven is of an extremely high standard; we know that from the comments made by consultant psychiatrists. We know that the demand for short-term acute beds is high, and that one in four of the population suffers from some level of mental health problems at one time or other during their life. We also know that the NHS trust’s figures on bed usage and length of stay at the unit have been called into question. Is now the right time to press ahead with a closure, or is it timely to call a pause to the process until such time as the disputed statistics have been independently analysed?