Roaccutane

Debate between Norman Lamb and Caroline Nokes

Tuesday 3rd December 2013 Westminster Hall

[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

Debate between Norman Lamb and Caroline Nokes

Wednesday 30th October 2013 Westminster Hall

[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.

Backbench business

Debate between Norman Lamb and Caroline Nokes

Thursday 14th February 2013 Westminster Hall

[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.