Drugs (Ultra-rare Diseases)

Caroline Nokes Excerpts

Tuesday 20th January 2015 Westminster Hall

[Greg Mulholland]

That is a good question, and it is the nub of the issue. It is not finances. Finances are clearly an issue, but it is important to get the message out that they are not the cause of the hold-up. There is an element of bureaucracy in the process, which I will address. I know that the Minister is seeking to ensure that we have a proper process, but ultimately we have to make decisions based on the effectiveness of the drugs. In this case, both drugs have been shown to work and are licensed and used by health systems in other countries.

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

I thank my hon. Friend for giving way, and I congratulate him on securing this debate. On effectiveness, would he agree—I hope the Minister also concurs—that it is about timing, particularly with Translarna? The drug will extend the ability of young boys to maintain their mobility and to keep out of a wheelchair, which is why it is so critical that the bureaucracy is speeded up for individuals such as my constituent Jagger Curtis and his dad, James. They need the drug now, not in six, 12 or 18 months’ time. It comes down to ensuring that the drug is available when it will be effective.

[Greg Mulholland]

Absolutely. That is very much the case with Morquio, too. Simon and Katy Brown have told me that the drug is having a huge impact now. I met Sam and saw him running around when he visited my surgery. When there is deterioration in such conditions, the clock can never be turned back, which is why we are urging the Minister to address the situation. I am delighted that we had meetings with him. All the organisations involved, the MPS Society, the Muscular Dystrophy Campaign, Action Duchenne and Joining Jack, are urging the Minister and NHS England to find a way to ensure that all these children, not only the 111 who are currently on the trials—some of whom are, of course, receiving placebos—but all 138 children with these conditions, are able to access the drugs now. We have asked for a decision on that by the end of January.

We are in this situation because a decision was supposed to have been taken by NHS England on 15 December 2014, but a letter was sent by the MPS Society and a young man with Morquio syndrome, Kamal—I am delighted that his family are visiting Parliament today—and on receipt of that letter NHS England, realising that its process was potentially discriminating against people with ultra-rare conditions, pulled the entire process, leaving all these families in limbo. NHS England has a responsibility to put another proper, robust process in place.

Oral Answers to Questions

Caroline Nokes Excerpts

Tuesday 13th January 2015 Commons Chamber

[Dr Poulter]

I do not think that people wanting to see their GP was at all helped by the previous Labour Government’s disastrous decision to contract out the GP out-of-hours service. Many patients are now struggling to receive appointments in the evenings and at weekends. The previous Government also broke the link with family doctors. To reassure the hon. Lady, the latest GP patient survey results suggest that less than 2% of patients who want GP appointments have to resort to walk-in centres or A and E departments. Under this Government, we have put in place an extra 1,000 GPs.

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

4. What progress his Department has made on its long-term plans for easing pressures on A and E departments and preparing the NHS for the future.

[Mr Mark Spencer (Sherwood) (Con)]

13. What progress his Department has made on its long-term plans for easing pressures on A and E departments and preparing the NHS for the future.

--- Later in debate ---

[Caroline Nokes]

Does my right hon. Friend agree that the NHS 111 service has been unfairly criticised by the Opposition, despite their key role in establishing it, and that it has provided impressive support this winter to our A and E departments by suggesting to patients convenient and effective alternatives to the emergency department?

[Mr Hunt]

My hon. Friend is absolutely right. Part of the solution to the pressure in A and E is providing good alternatives, and in the last year for which we have figures, the 111 service took 12 million calls, which is three times more than the 4 million calls that NHS Direct took in its last year of operation, and 27% of people said that had they not called 111 they would have gone to A and E. That is a huge success.

Physical Inactivity (Public Health)

Caroline Nokes Excerpts

Tuesday 18th November 2014 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mr Weir. I congratulate the hon. Member for Blaenau Gwent (Nick Smith) on securing this important debate. I feel somewhat daunted to be following the hon. Member for Worsley and Eccles South (Barbara Keeley), who is something of an expert on women’s sport and fitness. That was to be the focus of much of my speech, but there are a couple of other areas that I would like to discuss.

We have heard at length this morning about the problems associated with a lack of physical activity, and I wanted to focus briefly on some of the positives. Perhaps I come from a fortunate position and constituency, because Test Valley, in the south-east of England, is the eighth most active borough in the country. I spent 10 years of my life as the leisure portfolio holder on the local council, so I should know a little bit about what we did to encourage such activity, to ensure that there were pathways from school sports into clubs and to try to retain the crucial group of 14 to 18-year-old girls, where there is the most stark drop-off in levels of physical activity.

Test Valley borough council has long had a determined commitment to ensuring that sports clubs are supported, encouraged and celebrated. The weekend before last, I was lucky enough to go to the inaugural Romsey and District sports awards—a fantastic, uplifting event at which there was absolutely no shame about celebrating elite sport and the successes of those who have achieved a phenomenal amount, either as individuals or as part of teams and clubs. But there were also categories for veterans, a critical group that is being encouraged to stay in sport longer and be active later in life. There were also categories for coaches and volunteers. The volunteers were perhaps the most inspiring group, as they are giving up thousands of hours every year to ensure that clubs can keep going.

In my area, we are lucky to have a wide range of clubs. Every year there is a sports fair at Romsey sports centre, where the pathways from school sport into clubs are promoted and made accessible and inviting. One of the biggest barriers to physical participation is cultural. I always use the example of a golf club where, after walking in through the door, people are almost inevitably told that they are wearing the wrong things. The same is true of many gyms, where it is imperative to be wearing the right kit. Wherever people go, there are mirrors on every wall. People who feel somewhat nervous or anxious about making that first step—I firmly believe that the first step is the most important—can sometimes be put off instantly on arrival.

I have long said that the hardest thing when it comes to keeping girls and women in sport is that wonderful substance Lycra. Everyone in the gym will be wearing it, yet those who feel slightly self-conscious about their appearance, or those who might be overweight, may look in the mirror at themselves clad in Lycra and decide that the gym is not for them and that they are never coming back.

It is critical that we have welcoming environments that are accessible in terms of both cost and the physical structure of the buildings. It is also imperative that we have a welcoming, enthusiastic and encouraging culture among instructors. I declare an interest as a parliamentary ambassador for the YMCA, which has led the way on physical activity and sport over the past 150-plus years. It is very seldom that people will go into a gym in this country and find instructors who have not been taught by the YMCA how to make the environment welcoming and successful and how to enthuse people to achieve what they can.

As chairman of the all-party group on body image, I have focused on some of the cultural barriers to participation, but I will say a few words about why it is important to encourage and not to “fat shame,” a hideous term. I was interested to hear the hon. Member for Worsley and Eccles South refer to “Fatty Must Run”, about which I have some reservations because the first step is the hardest. In a nation of people who are not taking part in enough sport and exercise, we have to encourage that first step. We have to make it culturally acceptable and the norm for people to take part, and we have to give them a pat on the back when they start taking part in sport.

The fat-shaming that we see from celebrities such as Katie Hopkins does the wrong thing, and we have to try to encourage everyone, whatever their size or shape, to take part in sport. It is true that people can be healthy at any size and inactivity is a danger for its own sake, so, whatever their body shape, I encourage people to participate.

I conclude by picking up the point about the participation of girls and women. Fifty per cent. of girls are put off sport in secondary school, and that feeling can continue for the rest of their lives. My hon. Friend the Member for North Swindon (Justin Tomlinson) referred to jumpers being used as goalposts, which is an important point. It is easy for boys to take part in football because all they need is four jumpers and a ball. Traditional women’s sports require a great deal more equipment, and it is therefore harder for girls to carry on in sport once they leave school.

Many other hon. Members wish to contribute to this debate, so I will finish with one parting shot to the Minister: the Olympic legacy is critical. A feel-good factor is not enough; we want genuine well-being as our Olympic legacy.

[Several hon. Members]

rose—

Oral Hormone Pregnancy Tests

Caroline Nokes Excerpts

Thursday 23rd October 2014 Commons Chamber

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

I, too, congratulate the hon. Member for Bolton South East (Yasmin Qureshi) on having secured this important debate. I will keep my comments brief because, unlike many other Members present, I come to this subject quite late, and solely through a constituency interest; one of my constituents contacted me. I congratulate the hon. Member for City of Durham (Roberta Blackman-Woods) on her in-depth knowledge; sadly, I will not be able to add much to that.

I simply want to comment on the contact I have had from my constituent, who first approached me on this issue back in the summer. He desperately wanted to come to the launch of the all-party parliamentary group—I congratulate those Members who have set it up, perhaps particularly my hon. Friend the Member for Enfield North (Nick de Bois), who has worked tirelessly on this issue—but could not attend because his daughter, Vicky, was in hospital. She remained in hospital for 11 weeks. She underwent three major operations, and very nearly died during one of them. All that was entirely due to the fact that her mother had taken an oral hormone pregnancy test some 42 years ago. I know it is 42 years ago, because it particularly struck me that Vicky was born in the same year as me, 1972, which is well after it was known that there were problems with oral hormone pregnancy tests. That information had not been communicated to GPs.

We all know how quickly information now spreads, particularly via the internet, so if there are ever any concerns about medication or medical treatment, we very quickly learn about them. It seems incredible that in 1970 there were known to be problems, yet that information was not communicated to GPs until 1975. Vicky was born during the five-year window when the problems were well known and the drug had had its licence removed but it was still being prescribed by practitioners.

Vicky has a phenomenal raft of problems that were caused by the drug. She was born with an ectopic bladder and malformations of her feet and legs. She also has an incomplete pelvis and significant spinal problems. She is doubly incontinent, and for the past 24 years she has been confined to a wheelchair. She is unable to walk at all. I have met her several times, and when I first met her I had no idea what had caused her disability. I just knew her as a really lively, bubbly, enthusiastic member of the Romsey disability forum. It was not until her father contacted me and explained how her problems had come about that I began to appreciate what had caused her disability and how preventable it was. She could have been born completely healthy, had her mother not been given those drugs.

Vicky’s family have been quite amazing. They are really courageous and brave, and they were determined to hear the issue debated on the Floor of the House of Commons. They are pleased that it is being discussed today. What they and many other families want is the transparency that other Members have been calling for. They want to know what is in the documents that have not yet been made publicly available, and they would like me to urge the Minister—as many other colleagues have done today—to ensure that they are made available.

The family also want closure, and I do not think that that is unreasonable. We have heard from other Members that closure is critical to these families. The family support the calls for an independent panel to examine the documents, to come to an understanding of what went wrong and to give them the answers that they so desperately seek. I do not think those are big asks. In fact, they are really very modest and reasonable, and I sincerely hope that the Minister will be able to grant the wishes of the many families who have campaigned for so long, and give them the answers they are looking for.

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.