Thursday 29 January 2015
[Mr Mike Weir in the Chair]
Female Genital Mutilation
[Relevant documents: Second Report from the Home Affairs Committee, Session 2014-15, “Female genital mutilation: the case for a national action plan”, HC 201, and the Government response, Cm 8979.]
Motion made, and Question proposed, That the sitting be now adjourned.—(Mel Stride.)
It is an enormous pleasure to serve under your chairmanship, Mr Weir.
It is important to note that female genital mutilation has been on the agenda for many years. Only this week, however, our Select Committee held our first evidence session on the matter since the publication of our report last July. One can never predict when one will get a debate in Westminster Hall, but it is extremely timely that we are able to have this debate so soon after our follow-up evidence session.
I am delighted that the Minister for Crime Prevention will respond to the debate. She is well known for her involvement in efforts to combat FGM over many years. Now that she has returned to the Home Office, after a period as an International Development Minister, she can once again focus on the important issue of FGM.
I am also pleased to see in the Chamber my hon. Friend the Member for Bristol East (Kerry McCarthy), who is another great campaigner on FGM. She has tabled parliamentary questions and motions on the matter because so many people in her constituency are affected by that terrible activity.
The whole Select Committee does not normally turn up for debates on our reports, but I am pleased to see the hon. Member for East Worthing and Shoreham (Tim Loughton) in the Chamber to support us. However, he has other important duties in the House to attend to, so I understand why he will not be staying for the whole debate.
The Home Affairs Committee was united and unanimous in presenting our conclusions to Parliament and the Government last year when we published our report on FGM. At the outset of the debate, it is worth reminding ourselves of the numbers involved. By their very nature, they are estimates, but it is important to read them into the record so that people are aware of them. An estimated 125 million women and girls worldwide have undergone FGM, and an estimated 3 million girls are subjected to FGM each year. It is estimated that 170,000 women and girls in the United Kingdom are living with FGM and that 65,000 girls aged 13 and under are at risk of FGM.
More than 200 FGM-related cases were investigated by the police nationally in the past five years but, unfortunately, it has taken 29 years since the criminalisation of FGM for the first prosecutions to be brought. As we debate the issue today, a prosecution is ongoing in another part of London. We cannot talk about the circumstances of that case, and nor would it be right for us to do so, so I refer to it only in terms of it being the first such prosecution. Interestingly, it was initiated only two days before the Director of Public Prosecutions came to give evidence to the Select Committee. Having waited 29 years, it was something of a surprise suddenly to get the first prosecutions only days before we looked at the subject, but we welcome them. There have been no prosecutions since, which is an issue for us and for the Government.
I described the figures I cited as “estimated” because the prevalence of FGM in the United Kingdom has been difficult to determine due to the hidden nature of the crime. In two London boroughs, for example, almost one in 10 girls is born to a woman who has undergone FGM, meaning that they are also at risk of being cut themselves. We have little information about the children who are most at risk, or even about the extent to which the cutting is occurring in this country or when the girls are taken abroad.
This crime—the mutilation of women and girls—is taking place in the shadows, so it is important that we shine a light on what is happening. As we speak, somewhere in London a young girl is being cut, and we in Parliament are unable to do anything to stop that happening. That was why the Committee’s recommendations were so forceful about the need for substantial changes to how things are done.
I congratulate my hon. Friend on his appointment as shadow Solicitor-General. If the British people vote in a Labour Government and he is fortunate enough to become Solicitor-General, his Department—the Attorney-General’s Office—will have responsibility for that, so it will be for him and the new Government to say, “We will change the law.”
The Committee made specific recommendations on mandatory reporting and the criminalisation of failing to do so. The professions, however, are not so keen on that and would prefer to deal with this on a professional basis. We need to keep the law under constant review, but there is already legislation in place that has not been used. If my hon. Friend becomes Solicitor-General, we will expect whoever is his DPP to be a little more active than their predecessors of the past 29 years in ensuring that things happen.
The World Health Organisation defines FGM as
“all procedures that involve partial or total removal of the external female genitalia, or other injury to the female genital organs for non-medical reasons.”
That will include, in our view, designer work on genitals that is done with the woman’s consent.
FGM is usually carried out on girls between infancy and the age of 15, with the majority of cases occurring between the ages of five and eight. It is commonly performed by a traditional practitioner who has no formal medical training, without any kind of drugs to assist with the pain that the young girls are suffering, and using knives, scissors, scalpels, pieces of glass or even razor blades. We heard harrowing testimony during our inquiry of how girls are often forcibly restrained, in some cases by close members of their families, including their mother and aunts. While the performance of FGM might be done by a stranger with the instruments that I described, the act usually involves the connivance and support of members of the family including, in some cases, mothers.
During our inquiry, we heard some excellent evidence from those involved in dealing with FGM and campaigning on the issue. On Tuesday, we took evidence from two campaigners called Leyla Hussein and Alimatu Dimonekene. We also took evidence from Keith Niven, who is head of the rape and child abuse command in the Metropolitan police, Professor Nigel Mathers from the Royal College of General Practitioners and Janet Fyle from the Royal College of Midwives, all three of whom also gave evidence during the original inquiry. In addition, during the original inquiry, Leyla Hussein appeared before us, and we also took evidence from Professor Janice Rymer, Obi Amadi, a community practitioner, Dr Kerry Robinson, Dr Comfort Momoh, Linda Weil-Curiel, a lawyer from Paris, and Dr Emmanuelle Piet, a female gynaecologist who is county medical officer in a district in France.
The Committee’s conclusions were quite clear. We lamented the lack of prosecutions, so we were glad when Alison Saunders came before us to announce that prosecutions were taking place. Rather bizarrely, I found out about the first prosecutions on the Friday before that evidence session in a supermarket in Battersea, along with the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison), who is another great campaigner on FGM. We were there to talk about diabetes when the call came through to her that the first individuals had been arrested and would be charged. I pay tribute to all her work in the House on the issue both before and after she became a Minister, and she still has an interest as a Health Minister.
There is no doubt that prosecutions can send out the powerful message that the Government are serious about an issue, so the lack of prosecutions relating to FGM—only two in 29 years—is lamentable. The Committee said that we need many more prosecutions. It is not possible to match up the hundreds of thousands of girls affected worldwide, and the thousands affected or at risk in our country, with the fact that there have been only two prosecutions. We are not saying that we should prosecute for the sake of it; we are asking why there have not been sufficient prosecutions, and that is when we must look to the various agencies and their reactions.
Hon. Members will know that whenever the Select Committee conducts an inquiry, we come away with one standard recommendation: agencies concerned with a policy area have to work together. That is absolutely clear as far as FGM is concerned. There are some individual practitioners—Dr Comfort Momoh, for example, whom we visited at St Thomas’s hospital to look at her clinic and to talk to some of the women who were waiting to see her—who have tried to bring agencies together, but the process has taken far too long, and the agencies involved have become institutionalised.
We were especially critical about the lack of action by the police. We were not very impressed with the evidence given by the Association of Chief Police Officers lead. We did not feel that the answer to FGM was more seminars, discussions and conferences. We believe that the action required as a result of our report should be on the front line, engaging with community organisations to ensure that action is taken. We were not pleased with what the police had done.
On Tuesday, Detective Chief Superintendent Niven reminded us of evidence that had been given to us previously: the police cannot take any action if there are not sufficient referrals. At that time, the police were saying that it was not their responsibility, as they would act and investigate as soon as somebody came to them, and bemoaned the fact that not enough people were reporting the issue. We therefore must go to the next stage in the chain: social workers and doctors. The Committee believes that when doctors examine a young girl and find that FGM has been committed against her, they are under a duty to report it. We were of a view that there should be mandatory reporting, with a sanction for those who fail to report. Colleagues from the Committee—I am delighted to see my hon. Friend the Member for Walsall North (Mr Winnick) here, as he took part in the inquiry sessions—put this question to all our witnesses: what should the sanction be? A number of them talked about the need for criminal sanctions, depending on the seriousness of the failure to report, which suggested that some individuals deliberately wished not to report, while others did not know what they were looking at.
Frankly, I was surprised to hear from some of our witnesses that doctors might not know what FGM is. Given that it takes seven years to train a doctor and medicine is one of the most difficult subjects to get into at university, I would have thought that most people who came out of that training would know whether FGM has been committed against a patient, rather than requiring further training. Of course we need particular FGM training, but doctors ought to know when something is wrong. I was really surprised that people, including social workers, were saying, “Well, the doctors might not know.” When we asked why, they said, “They may not be trained about it.” That is a big area that we need to look at, and the Committee believes it is important that we do so.
The information given to us by a number of witnesses was that although prosecutions in Britain have been very few—there have been hardly any, although the first are now taking place—in France there have been 40, and sentences have been imposed. Why should there be that difference, bearing in mind that this barbaric custom must be eliminated as far as we are able to do so?
My hon. Friend is absolutely right. The French need to be congratulated on the way they have dealt with the issue. He will recall the evidence given to the Committee by the witnesses from France whom I have already mentioned. I went over to Paris to meet doctors and prosecutors, and I was extremely impressed by not just the passion of those on the front line but the willingness of the authorities themselves to get things done. We went to meet the officials of the relevant Minister. They were determined to ensure that that willingness continued. We could not understand why there was a difference between what the French were doing and what we were doing, with so many prosecutions in France and only two in our country.
We asked every one of our witnesses from Britain whether they had gone over to France to look at good practice. Frankly, none had done so, from the ACPO lead to those who run our royal colleges. It is really important that we compare what is being done abroad to ensure that we are doing the right thing.
We also believe it is important that all schools provide training for teachers on the issue on in-service training days. Although we did not take direct evidence from schools to the extent that we would have wished, simply because we did not have time to see everyone, we felt that that training was important. Teachers and those in the education profession should be aware of and able to deal with the issue. If we look at a place such as London, there is no reason why every teacher in every school ought not to be made aware of the problem. They should be told about it and told exactly what to do about it, so that we can get to the truth of what is happening.
I apologise because, alas, I am unable to stay to the end of the debate. I joined the Committee after the original report was published, but have been at the subsequent sittings. The Chair rightly talks about the need for prosecutions, and we have better examples to follow in France. He also rightly talks about the need for better training and awareness, although, frankly, ignorance is no defence in this case. However, surely the heart of what we need to do is to challenge the culture and mentality of communities and families who allow FGM to go on, whether we do so through schools educating girls that they have a right to say no, or through working with the communities to say that it is an act of barbarism and a terrible form of child abuse. That is where the root of the problem lies, and it is what has to be rooted out.
The hon. Gentleman is absolutely right. I will come on to the role of the community and family members, but he is right to raise the matter at this time. I agree with everything he said; this is a matter for communities and families.
We have dealt with the police and the lack of action by the police. The report has dealt with the comparisons with France. The report deals with the prosecutors. We have dealt with the medical profession, but before I finish with the medical profession, I have to say—this is my personal view—that of all the witnesses who came before us, the royal colleges seemed to lack understanding of the seriousness of the subject. They kept talking about the need for guidance and guidelines and for it to be dealt with on a disciplinary basis within their professions. We were talking about criminal sanctions for doctors who failed to report. They were relying on patient confidentiality to ensure that, whoever came before them, the information was kept within the parent-doctor or client-doctor relationship. We did not agree with that. We feel that the medical profession and the royal colleges have not acted swiftly enough to deal with the issue, because they are not sensitised to it; they do not have enough expertise in dealing with it.
There are individual doctors in different parts of the country who do have expertise. I remember doing a radio interview on this. There is a doctor in Reading who has made it her life’s work to deal with FGM, so many women go to Reading to see her, but that kind of expertise needs to be taken all over the country. St Thomas’s hospital is a classic example. Comfort Momoh is doing wonderful work there, but she has built things up herself; no one asked her. She has developed that work and ensured it will help women and children.
In order that there is no misunderstanding by those who may be sensitive, in the medical profession or elsewhere, that this could be a form of racism, should we not make it absolutely clear that what we are discussing has absolutely nothing to do with the Islam religion as such and that the leading campaigners—very courageous people whom we should praise, as I am sure my right hon. Friend has done—are themselves Muslims?
Yes. I support that absolutely. I am sure that my hon. Friend was moved, as I was, by the fact that Leyla Hussein broke down in tears before the Select Committee on Tuesday when she was asked whether she had been subjected to death threats and other threats to her and her family. The courage of people such as Leyla Hussein goes against those who believe that some kind of political correctness means that people cannot talk about these subjects—that the community is somehow on its own and no one can comment. As my hon. Friend said, this is barbarism—brutality—and it needs to be dealt with. There is no community, religious or political justification for what is going on, which is why it needs to be stopped.
To finish my point on the medical profession, it needs to do much more. This country does not do mandatory examinations of young children as France does. That is not what we do here, but we believe that if a doctor comes across this, there should be a mandatory duty to report.
Let me deal finally with where we go from here and what the Select Committee hopes will happen to its report. The Home Affairs Committee does not believe in publishing reports with a lot of recommendations and then just walking away from them. That is why this week we revisited the conclusions of this report and took fresh evidence. I can say now, even though we have not written another report, that I was not overly impressed that huge progress has been made since we published this report, but we made a promise to the campaigners that we would look at the issue again, so we will produce a report as a result of our revisiting it. However, it will be for our successor Committee in the new Parliament to look at it again.
The worst possible thing that we could do for those who suffer every day is to produce a report, let it lie on the shelf, wait for the Government response and not pursue it. We wish to pursue this matter until we see real change, and I do not mean just the kind of FGM that we have been discussing today. We raised with all witnesses that which is happening as we speak in places such as Harley street—private clinics that women go into to create what are described as designer vaginas. They consent to that happening; they are not forced to do it by individuals holding them down. They go voluntarily, for whatever reason—peer pressure or another reason—and have these operations themselves. I believe that this should be a criminal offence, and I am very pleased that all the witnesses who gave evidence to us this week—barring Detective Chief Superintendent Niven, who thought there should be a debate about this—also felt very strongly that it should be a criminal offence.
The argument is that we can allow this to happen if there is consent and it is done in the private sector, but not if it is done in people’s homes and redone sometimes in the public sector when women go to hospitals and doctors perform the operation again, for whatever reason. We should not have double standards. That is why I believe that what we have proposed should happen.
I wish that I could say in conclusion that, as a result of something we have done, someone has been prevented from being the subject of FGM. We do not claim that. All we say is that we hope that we have raised the issue in a positive and constructive way. I believe that we are pushing at an open door. Government and Opposition are united on doing something about this. I saw the Prime Minister’s personal commitment during the Girl summit. Leaders came from all over the world to support the initiative that he and the Department for International Development had taken.
The Minister should take credit for the Girl summit and her involvement in that. Everyone is for it and everyone is united, but this practice is still going on in London, Leicester, Bristol and Manchester and is not being stopped. We have to stop it, because that is the right thing to do, it is the humane thing to do and it protects the human rights of girls and women.
It is, as ever, a pleasure to serve under your chairmanship, Mr Weir
I welcomed very much the Home Affairs Committee’s decision to hold an inquiry on FGM and the publication of this report. I will reserve my comments on the Government’s response until I can, I hope, intervene on the Minister, although I did think that there were some areas in which that could have been stronger and more enthusiastic about the Committee’s recommendations, especially with regard to personal, social, health and economic education.
As hon. Members know, the witnesses to the inquiry included Integrate Bristol, and much of the leadership on this issue has come from young women in Bristol, including Fahma Mohammed, who was chosen to spearhead the campaign by The Guardian against FGM, as well as the e-petition, which gained more than 234,000 signatures. That petition alone did a huge amount to raise awareness of FGM. When I first became aware of it and started talking about it, after I became an MP in 2005, awareness was very limited, but FGM is now very much on the radar. People understand what the issue is, even if they do not know all the details. I pay tribute to the work of young women in helping to raise awareness.
Fahma also successfully persuaded the previous Secretary of State for Education to write to every school to highlight his Department’s safeguarding guidance. It is very disappointing that, as the report says, many schools—70%, I think—did not appear even to have looked at that, certainly within the first month of its being sent. I will come back to talk about the work that is done in schools.
Bristol is not included in the report’s list of places that were found to have a prevalence rate of FGM of more than 2%, although it should be noted that the data used were from between 2001 to 2004, so they are now rather out of date. There have been considerable demographic changes in Bristol, so those data may not reflect the true picture for 2015. Much of the evidence on FGM is, as the report notes, anecdotal, but whatever the true rates are, any instance of FGM being carried out is obviously completely unacceptable and something that we must continue to work to challenge.
The Select Committee describes the failure of the state—be it the Government, the police, or health, education or social services—over recent years to protect girls from FGM as a “a national scandal”. The mutilation of many of those girls—girls to whom the state owes a duty of care—could have been prevented, and the fact that we did not manage to do so, and that we continue to fail to do so, is shameful.
The community in Bristol that is most at risk is the Somali community. I was pleased to note from the report that according to the Tackling FGM initiative, support for the practice among settled members of the Somali community has waned in recent years. Very good work has been done in the community in Bristol. I have particularly highlighted the work of young women in Integrate Bristol, but whenever I meet Somali community groups, I find that men are also very committed to challenging FGM. The Committee’s recommendation 19 states that the Government should
“encourage the roll-out of best practice from groups such as Integrate Bristol.”
It has been more than two years—I think it was in November 2012—since the former Director of Public Prosecutions came to Parliament to reveal to a group of MPs his action plan for FGM. At that time, we were impressed by the points that he laid out in the action plan, as well as by the fact that he was taking a personal interest in the issue and coming to speak to us himself. The report outlines why it has proved to be so difficult, even with that action plan, to secure a prosecution, and cites as the main reason the fact that
“there have been very few investigations by the police.”
I tabled parliamentary questions several years ago in an attempt to find out where the blockage was and whether the CPS was reluctant to take cases forward. I was told that there was no lack of will on the part of the CPS, but that very few cases were being brought to its attention. As the report says, about 20 cases had been brought to the attention of the CPS. The fact that some prosecutions are moving ahead is good news but, as we have heard, the numbers are nowhere near the scale that France has managed to achieve. I have spoken to the police about this many times and they always say that they would be happy to investigate if evidence was brought to their attention. As the DPP has said, however,
“if you wait for the archetypal young girl to come through the door to tell you what has happened to her…that is not going to happen”.
The police cannot rely on self-reporting from victims; they need referrals from other sources. I welcome the work that has been done in Bristol in recent years to improve FGM awareness among health professionals and those who work in the voluntary sector.
As the report highlights, there is still a failure to perceive FGM as a safeguarding issue in the same way as other forms of child abuse, which is what it is and how it must be treated. Indeed, the report says that the record of referrals by health care practitioners and others is extremely poor. I note the Committee’s recommendation that there is no point simply publishing multi-agency practice guidelines online and that they should be put on a statutory footing. It also states that FGM should be included as
“an essential part of all child protection training”,
with which I agree.
The report highlights misplaced concerns about cultural sensitivities, which is one reason why I believe that campaigning by young women from those communities that are most affected—young women who have undergone FGM, who have been at risk, or whose family members have undergone FGM—is so important. I have watched a session at St Brendan’s sixth form college in Bristol in which young women from Integrate Bristol were explaining FGM to pupils from their age group, and hon. Members will, I hope, recall an episode of “Casualty” that featured an FGM storyline.
I endorse the report’s recommendation on compulsory PSHE, as that subject has been raised with me repeatedly by professionals who work with young people on not only FGM, but issues such as teenage pregnancy, physical or emotional abuse, relationships and drugs. When I go to schools or talk to youth groups, young people always say that they think that PSHE should be made compulsory and extended to cover more areas. That is important, so I do not understand the Government’s reluctance to move on that. As I said, the Government’s response to that recommendation is disappointing. The recommendation that Ofsted should explicitly examine a school’s approach to FGM and violence against women—that is what FGM is—is also worthy of further consideration by the Government. I would be interested to know whether Ofsted has responded and whether it believes that it could take that up. The Government say that Ofsted does not conduct inspections of specific subject areas such as PSHE, but it will take account in its overall assessment of how schools deal with issues such as violence against women. I believe that that should be nailed down, because we know how schools respond to the threat of Ofsted’s verdicts, and I hope that Ofsted will give greater priority to the issue.
The section of the report on health care professionals is important. Muna Hassan from Integrate Bristol tells of the experience of her mother, who gave birth in Sweden. The midwife raised the issue of FGM as soon as Muna’s mother found out that she was pregnant, and it was followed up as Muna progressed through nursery and beyond. That is something that we can learn from. The report notes:
“Healthcare professionals have a vital role in breaking the generational cycle of FGM.”
The Committee recommends that
“the FGM status of the mother and her intentions for the child…be made a compulsory question at the antenatal booking interview”
and that, as a matter of policy, referrals should be made to children’s social care or the local multi-agency safeguarding hub if the mother has undergone FGM or there is perceived risk to the child. The Government say in their response that such professionals are already required to inform police if there is any risk of abuse, but I would appreciate it if the Minister would elaborate on that. According to the Committee’s recommendation, the simple fact that a mother had undergone FGM would be enough to trigger a referral, but the Government do not seem to believe that that should be the case. The report also says that GPs should ask new women patients about FGM as a matter of routine and states:
“We do not accept that patient confidentiality should prevent practitioners from making a referral where a child is at risk: as with any other form of child abuse, the law allows for disclosure where it is in the best interests of the child.”
We should all be focused on the best interests of the child.
I note the Committee’s recommendation that there is a strong case for strengthening the law on FGM and the Government’s response that they are doing so. The introduction of FGM protection orders is an interesting recommendation, so perhaps we can raise that with the Justice Secretary when he answers questions in the House next Tuesday.
Finally, I note the Committee’s finding that there is
“too little provision of clinical and mental health support services for the many thousands of women and girls in the UK who have undergone FGM.”
That is important, because FGM affects a woman throughout her whole life, physically and psychologically. Although we are focused on preventing FGM, we must not forget those whom it was not possible to protect and who still need our support.
It is a pleasure to speak in the debate and to contribute to the ongoing discussion about how we respond, as a Parliament and as a nation, to female genital mutilation and how we can strengthen the effectiveness of our response.
I thank the Home Affairs Committee for its report. I particularly thank the Committee Chair, my right hon. Friend the Member for Leicester East (Keith Vaz), for his persistence in ensuring that the report was not simply placed on a shelf. The report and the Government response not only resulted in immediate legislative changes —the amendments made to the Serious Crime Bill—but raised awareness of the issue of FGM. They gave campaigners, activists and MPs a great deal of information and evidence, and provided the tools to extend the conversation to our communities.
So many activists, campaigners and charities are involved in tackling FGM. We have already paid tribute to Leyla Hussein, and I would like to mention Nimco Ali and others in Daughters of Eve, the Hawa Trust and Celestine Celeste in the west midlands, which I have worked with. So many across the country have raised the issue of FGM and championed change in their own areas, as well as contributing to the national conversation. It is vital that we work with communities and give them the tools that they need, as well as building a bridge between them and what happens at a legislative level.
Although the Government have responded to some of the recommendations in the Home Affairs Committee report, I believe that, in some areas, the Government have not gone far enough. We need to go even further in our response to FGM when it occurs and in our national prevention strategy. FGM affects thousands of women and girls in this country, and many more are at risk, particularly where mothers have been victims and survivors of FGM. I pay tribute to the hon. Members who have made the vital point that there is no cultural excuse for FGM and that it is not a matter of religion. Indeed, 300 faith leaders signed a declaration last year to the effect that FGM is not part of their religion. This whole debate, led by the Home Affairs Committee’s work, has been important in helping to put that idea to bed and saying that we have a new consensus on taking forward the debate nationally. We are trying to be a leader on the world stage.
My hon. Friend the Member for Bristol East (Kerry McCarthy) raised some vital points that I wholeheartedly support, particularly on the importance of early education in schools. It is staggering that the Conservatives, and the Government as a whole, have voted against measures to make sex and relationship education compulsory in schools. Such education is a vital part of ensuring that teachers understand the issue and that young people have the tools to raise issues if they happen in their own lives and to raise awareness of what may be happening to others around them so that intervention can take place.
Where survivors and victims are identified, whether by safeguarding procedures or through health services, the provision of mental health support services is an issue. I have heard in conversation that those who have been cut have ongoing health conditions that they do not necessarily associate with FGM or with what has happened to them, which stops them getting the health support they need. There is a big message about how we need to join up justice, health and education services with a cross-Government strategy, which remains an important part of how we continue to move forward.
It is a scandal that we have not seen a successful prosecution since we passed the law making FGM illegal. A case is going through the courts, and there are ongoing discussions about that case, but the encouragement of FGM is an issue that I will go on to address. Some of the report’s recommendations have been included in the Serious Crime Bill and deserve a mention. I thank those Members of the other place who were important in strengthening the Bill there. Among those measures, lifetime anonymity for survivors is important because although many of those who have been cut feel a sense of shame and do not want their community to know, they want justice.
FGM protection orders, which we debated in Committee, are set to play an important part, and I am pleased that, in Committee, the Government committed to our call for legal aid for those protection orders. We cannot have measures in law that people do not have the means to access, particularly when an application for an FGM protection order might come from a girl herself. If the girl, her family, her colleagues or her school cannot help her to secure the necessary resources, that will be a measure in theory and not in practice. It is important, as the Government have recently committed to, that legal aid is made available to provide legal services not just for supporting paperwork, but for advocacy. It is important that the Government adhere to that commitment.
There has been an important move to broaden the scope of the Female Genital Mutilation Act 2003 to cover girls who are habitually resident in the UK, which was a vital gap, because people have different immigration status. We need to ensure that all girls in the UK are protected. In Committee, we debated how that will be taken forward, which is important. The Bill is still passing through the House, and we need to know how we will be working with agencies abroad and how the Home Office will be working with the Foreign and Commonwealth Office to ensure that, if any girl who is habitually resident in this country is at risk either abroad or here, moves can be made to ensure that, as with those at risk from forced marriage, agencies abroad are trained and able to work together to ensure that there is protection for girls who are at risk.
The Bill introduces the new offence of failure to protect a girl at risk from FGM, which is an important measure that sends the right message that parents or guardians who do not safeguard their child will be held to account. It would be helpful to know what further dialogue the Minister has had on how that could be effectively implemented so that parents who have not taken care to safeguard their children may be successfully prosecuted in this country, as has happened abroad.
In Committee, we called for more action to address encouragement of FGM, which is a vital part of ensuring that we address some of the cultural issues in relation to FGM. I pay tribute to Dexter Dias QC, the people he has worked with and the many who have contributed to his research on why the current measures do not go far enough to intervene early to help to prevent FGM occurring in the first place.
There is huge pressure on parents from within affected communities, and campaigners feel the same pressure. We heard about the harrowing experience of campaigners such as Leyla Hussein, particularly when they stand up to the forces of tradition within their own communities. It is important to pay tribute to what those campaigners do, because it is not easy for them to stand up within their own community on issues that affect them, their friends and their family, as opposed to an issue of concern that does not have a direct effect on their own community.
Some important messages came out of the work done by Dexter Dias QC and others on the encouragement of FGM and the need to consider a distinct offence making such encouragement unlawful. That is an important part of strengthening not only our response and legislation in the UK, but our obligations under international law to combat FGM effectively, rather than merely reacting to ongoing practice, vital though that is.
The UK’s international law obligations are clear in their requirement that we take active steps to end the practice of FGM. We have been calling for the encouragement of FGM to be made illegal in this country because such a move is necessary for stopping FGM at its root. We propose a strengthened measure that builds on the amendment made by Baroness Meacher in the Lords in July 2014. We propose a tighter offence that, for the first time, would give parents who do not want to participate in this tradition, but who need the strength to challenge what they are being asked to do, the tools in law to challenge the public encouragement of FGM. Preventing encouragement in its strongest sense has been welcomed by survivors. Such a measure would, in our opinion, help to effect an important culture change within FGM-practising communities.
Effective communities often retain a strong hierarchical structure, in which encouragement or admonishment from elders can carry enormous weight. Not only are parents told that their daughter may never get married, but whole families can be ostracised and isolated as unclean. It is incredibly important to have a way to strengthen what families can do within their communities. The Hawa Trust, an organisation that works with local communities in Hackney, told the Select Committee on Home Affairs last year:
“The young uncircumcised girl is still considered today as a second-class citizen, impure… Such a young girl can neither marry nor even be allowed to prepare the family meal until she agrees to be circumcised.”
Sara, a teenager from a community practising FGM, told researchers working with Dexter Dias QC and others what makes parents do it:
“People. People telling them to. You call it encouragement, I call it people telling them you must follow our tradition, or else.”
If we are to end FGM we need a much stronger prevention strategy. What we propose goes further than what is on the statute book. This is not a free-speech issue about a matter of opinion; this is about challenging active encouragement to offend. We have said that a statement would need to be published with the intent to encourage members of the public directly or indirectly to mutilate the genitalia of a girl, or be reckless as to whether members of the public would be directly or indirectly encouraged.
Particularly if that could be followed by the police issuing encouragement warning notices and, where those were breached, applying for an encouragement warning order, followed by a criminal offence, we believe that it would be a proportionate response that strengthened the conversation we are having and sent a message of zero tolerance of such violence against girls. It would send out the message that FGM is child abuse and must be considered as such. Just as we would not tolerate anyone in our communities advocating child abuse, we should not tolerate anyone in our communities across the country advocating FGM or pressuring parents to cut their daughters.
Through the availability of such tools, the police and local services will be able to respond far more effectively and support campaigners for change who need help to intervene in their own communities in the interests of the majority who want change to happen.
To close on some other issues raised in the Government’s response, although the Home Affairs Committee rightly discussed the definition of reinfibulation, we also discussed that when considering the Serious Crime Bill. Again, the Government were reluctant at that stage to change the definition to make it explicit that reinfibulation was FGM and intended to be covered by the legislation. We have continued to hear concerns from royal colleges and others that it has not been clear to everybody in the health and justice sectors whether the original Act was intended to cover reinfibulation. It is important that the Government continue to consider whether to introduce a simple amendment, such as we proposed, to make it clear in the Serious Crime Bill that reinfibulation is part of the original definition of FGM.
Once again, I thank the Home Affairs Committee, particularly my right hon. Friend the Member for Leicester East, for one of the most powerful interventions in my area of preventing violence against women and girls. It has engaged external communities, as well as Members of Parliament, with the issue, galvanised change and challenged Government and Opposition on this vital issue, on which we should continue to take a lead in ending FGM in our country and around the world.
It is a pleasure to serve under your chairmanship, Mr Weir. I congratulate the Chairman of the Select Committee on Home Affairs, the right hon. Member for Leicester East (Keith Vaz) on securing this debate, and I thank him and other Committee members for their interest in the issue and their detailed report. I am pleased to see the public health Minister, my hon. Friend the Member for Battersea (Jane Ellison), arrive; she has campaigned long and valiantly on this issue.
The coalition Government formally responded to the report on 9 December, setting out how the majority of the recommendations are in line with work that the Government are already undertaking. I will touch on some of them in due course. Many powerful contributions have been made to this debate, for which I am grateful; it has been a good discussion. This is an issue on which I am pleased to say all sides agree. It is probably the first issue I have campaigned on in politics where I have not found anyone against me, including the media.
After my speech, I intend to pick up on the points made by hon. Members before concluding. As set out in our response, the Government agree fully with the Committee’s assessment that tackling FGM requires a comprehensive approach. We recognise that the issue must be addressed through a range of measures focused across prevention, enforcement, support and protection. At the Girl summit last July, we announced an unprecedented package of measures to tackle FGM domestically, and we are on course to deliver those commitments ahead of the election.
Time, although I have a lot of it, precludes my setting out point by point everything that this Government have done to tackle FGM. Our actions include updated guidance, communications campaigns, training materials and a suite of resources for front-line professionals and communities, but I will provide more detail about how that action has contributed to increasing awareness of and focus on FGM. Demand for awareness material has increased even since the Girl summit. Since July 2014, we have received more than 230,000 orders for the materials, which include copies of guidance, fact packs and posters.
Although I hear that those measures are about process, the demand created by the high-profile nature of the issue is reaching people. The online training tool, while not the end of the line—I agree that colleges need to train their professionals—is making a substantive difference. Calls to the National Society for the Prevention of Cruelty to Children’s dedicated helpline have almost doubled in the six months since the summit, but the coalition Government recognise fully that we must sustain and build on that momentum if we are to protect the thousands of girls at risk from this horrendous practice.
I recognise that it is always helpful to have the Home Affairs Committee hold our feet to the fire. As a campaigner who kicked off the Government campaign—it only really fired up about two and a half years ago with the launch of the £35 million campaign to support the African movement—I think that things have moved on apace, and I agree that holding feet to the fire must be done regularly. The worst thing that could happen would be if all the work that all of us have done, and the passion that we feel across all parties, lost momentum in successive Parliaments down the years.
I acknowledge the work done in this area by the public health Minister, the hon. Member for Battersea (Jane Ellison).
May I hold this Minister’s feet a little closer to the fire, as she has offered to have them put there, especially in relation to Government funding of community organisations involved with this issue? We were very surprised that the organisation headed by Leyla Hussein, for example, receives no Government funding; it receives funding from Comic Relief, which is not yet part of the Government, but no direct Government funding. I put that question in particular to the Minister.
Also, on the issue of awareness, does the Minister agree that it is important that we fund organisations that can get into the community, rather than just giving out Government leaflets and doing this work through Government agencies?
I thank the right hon. Gentleman for that intervention, but we are already funding community organisations. Of course, anyone who does not get funding always says, “I haven’t got funding.” We are trying to underpin a number of organisations, including with funding. There is a £270,000 European fund and a £100,000 Home Office fund, and they are both funding community organisations. I went to visit one in Battersea, in fact. I am sure that the public health Minister, my hon. Friend the Member for Battersea, will want to talk about that if she intervenes on me.
Furthermore, community champions are being created—10 feisty females who are taking this message right into the communities. It is not only the Somali community that is affected; so often that community is put forward, and of course it has an extremely high prevalence of FGM. However, a whole range of communities are affected. There are champions from all of them who can take the message right into the heart of their communities, where they are accepted in a way that middle-aged politicians would not be. That is not ageist; it is just—
Would the hon. Lady mind if I simply finished? If there are points she wants to raise as I get towards the end of my speech, I will give way then. There are so many issues to get through.
The Committee has rightly focused on the low number of prosecutions for FGM. We all agree that prosecutions are not the sole answer and that the well-being of victims is paramount. However, it is equally important that the people who perpetrate this type of child abuse should have to feel the full force of the law, and I am pleased to say that the first people to be prosecuted for FGM in this country are currently before the courts.
There has been a continual cry that over all these years there has not been a prosecution, but I have to point out that under the coalition Government work has been done and we have created pressure. Indeed, the Director of Public Prosecutions who preceded the current DPP, who is Alison Saunders, chaired the action plan group and had his own action plan. When she came into post, Alison Saunders was enthused and advised to go forward on this issue. Nevertheless, there were no prosecutions prior to this time because there had been no referrals to the police. There is clearly much more to do in this respect, but we must recognise that progress has been made.
Prior to 2010, the Crown Prosecution Service was unaware of any cases being referred by the police for a decision to charge. Obviously, that brings me on to mandatory reporting, which I will discuss in a minute; that will be constructive in upping the rate of referral.
Since 2010, 14 cases have been referred. These referrals resulted in the case currently being heard at Southwark Crown court, and a number of other live cases. Importantly, a review of those cases by the CPS has led to some of the changes to the law before Parliament now, in the Serious Crime Bill. They will help ensure that law enforcement and the courts have the powers to bring the perpetrators of FGM to justice.
There has also been an increase in the number of police investigations into FGM; the figure varies from force to force, obviously, according to the prevalence and experience of FGM, although they are not entirely co-related. For example, between January and November 2014, West Midlands police received 118 reports of suspected FGM—a significant increase from the 25 reports they received in 2013. The Metropolitan police have seen a similar increase and have conducted joint operations at the border with the Border Force. It is important to reflect that while those investigations may not have resulted in prosecutions, the police have stressed that they have contributed to a robust safeguarding response that has helped to protect those at risk; prevention is much better than having to prosecute after the event.
Clearly, not all forces are as advanced in their approach to tackling FGM as the West Midlands police and the Metropolitan police, but the law enforcement response is being improved more broadly in a number of ways. The CPS has appointed a lead FGM prosecutor for each CPS area in England and Wales, and joint police-CPS investigation protocols for FGM have now been agreed with the 42 police force areas. In addition, 390 police and prosecutors have benefited from training on FGM, and the College of Policing is introducing a new authorised professional practice on FGM to raise awareness among investigators and to better equip them to tackle the practice.
Furthermore, in the past year the Home Secretary has commissioned Her Majesty’s inspectorate of constabulary to conduct a review into how police forces tackle honour-based violence, including FGM. It is planned for later this year and we will use the findings to strengthen further our approach to FGM.
Several hon. Members asked about the law. As I have already mentioned, we are strengthening the legal framework. A number of legislative changes concerning FGM are being taken forward in the Serious Crime Bill. First, we are extending the reach of the extraterritorial offences in the Female Genital Mutilation Act 2003 to habitual residents of the UK, as well as to permanent UK residents.
Secondly, we are making changes to grant lifelong anonymity to victims of FGM, to help encourage victims to come forward. The hon. Member for Feltham and Heston (Seema Malhotra) raised the issue of anonymity and it is very important. Although we no longer have any truck with cultural eggshells, FGM is obviously still a very sensitive and personal issue; how one might be reviewed and regarded in one’s community is a big thing for those survivors who want to come forward to speak out. Granting them anonymity will be a protection for them.
Thirdly, the Serious Crime Bill creates a new offence of failing to protect a girl from the risk of FGM. That would make potentially liable someone who had parental responsibility, or who had assumed parental responsibility, for a girl under 16 who had been mutilated, if that responsible person knew or ought to have known that there was a significant risk of FGM being carried out but did not take reasonable steps to prevent it. I would assume that if a parent has suffered FGM, there is a high likelihood of a risk to their child.
We believe that these new measures will improve our ability to prosecute this appalling crime. Although we are keen to see the criminal law being used, ideally we want to prevent FGM from happening in the first place. Following a consultation launched at the Girl summit, the Serious Crime Bill also introduces a civil order to protect those at risk from FGM and those who are already victims of FGM.
The FGM protection order will operate in a very similar way to the existing forced marriage protection order. It will enable the courts to make an order that could include, for example, a requirement for a passport to be surrendered, to prevent a girl from being taken abroad for FGM. Although we know that FGM is being carried out here—I come from Haringey: it is happening there and in other areas—we also know that many girls are taken back to their mother countries to be cut, particularly in the cutting season, which is in the spring to early summer.
As the Home Affairs Committee report highlighted, those in safeguarding professions are absolutely key to reporting FGM. The Government have now consulted on how best to introduce a new mandatory reporting duty, to ensure that professionals report cases of FGM to the police. As the right hon. Member for Leicester East said, there is some nervousness in some quarters about mandatory reporting, but we also disagree with that. Some professionals have historically had concerns that confronting harmful cultural practices would result in their being labelled as politically insensitive, lead to issues of confidentiality or somehow drive the practice underground. We have to deal with that as we go. FGM is against the law—it is child abuse, and we must move this issue forward. There can be no equivocation about that.
At this point, I pay tribute to Efua Dorkenoo, who is the mother of tackling FGM and who tragically died very recently; we are absolutely bereft without her. She was absolutely clear about FGM. She knew the communities affected by it and she knew every difficulty that there is to know. She was unequivocal about the need for mandatory reporting and for cases to come to prosecution. I say, “Hear, hear, Efua!”
In addition, we want to see an increase in the number of cases being referred to the police. Having mandatory reporting will bring clarity for front-line professionals. At the moment, the situation is very difficult because there are always two halves to a professional. One of those is to protect, to care and to worry about things; that may lead to a fear that if a report leads to police action or a police referral, that will dent, or make more difficult, the caring side of their profession. Having a mandatory duty to report should clarify that position and take that onus and burden away from them.
Alerting the police to actual cases of FGM will allow professionals to investigate the facts of each case and increase the number of perpetrators apprehended and prosecuted. The consultation has finished, and we are considering all 150 responses and some of the issues around the sanctions. The mandatory reporting duty will help make the changes happen. We will set out our response to the consultation shortly with a view to legislating in this Session.
Legislation alone, however, cannot end FGM. Prosecutions would send out a strong message on the rule of law, but are unlikely to end the terrible crime. Prevention and protection are also of critical importance, and part of that work is continuing to ensure that those communities in the UK practising FGM are aware that it is considered to be child abuse here. There is a great lack of knowledge and penetration into some of those communities, although that is beginning to happen.
I recently went to Mogadishu, Somalia—previously, one could barely raise the issue or even say the words “female genital mutilation”, particularly in Sierra Leone and Somalia—and I talked with Prime Ministers, Presidents, women’s groups and a whole range of people. I spoke with activist girls in Somaliland. There has been an amazing step change from two years ago, which gives one real hope that this is a movement for change. It is not just happening in one country. The African Union has sent a resolution to the United Nations. The UN banned the practice worldwide in December 2012. Some 25 countries in Africa have banned FGM. Our diasporas and their mother countries are connected. We will not end FGM unless we support Africa, the middle east and other places where it is practised to end it.
Through education and protection measures, we will prevent more girls and young women from having this so-called procedure. I agree about the work in the communities, which is incredibly strong.
I will give way, but first let me get through some more of my speech. There will be a few minutes at the end.
The Government have published and updated the multi-agency practice guidelines on FGM. The guidelines highlight the risk factors that teachers, nurses, GPs, police officers and social workers should be looking out for during their work and set out what action they should take. To ensure better compliance with the guidelines, we have consulted on our commitment to making them statutory, as recommended by the Home Affairs Committee.
We are also supporting and funding community engagement work to raise awareness, which I covered earlier. We are ensuring that NHS acute hospitals are routinely recording information on FGM and using that to support social services and the police, as well as sharing it to provide appropriate health care for girls and women. The work that my hon. Friend the Member for Battersea has done in the Department of Health has motored the step change, because previously FGM was not even recorded. In that respect, it did not exist in the health professions.
The first statistics were published on 16 October and showed that for September, 125 of the 160 eligible acute trusts in England—that is 78%—submitted signed-off data. There were 1,279 active cases, and 467 newly identified cases of FGM were reported nationally. The statistics continue month by month, but I will not read all the months out. Those statistics represent a massive step change, because, as we all know, in politics if it cannot be counted, resources cannot be obtained, the problem does not exist and it does not get addressed. We now have concrete data, which is a huge step forward. I congratulate my hon. Friend on the work she has done to make that happen.
The Government’s new FGM unit launched on 5 December 2014 and will work with local areas to strengthen their response. The unit will deliver a comprehensive programme of engagement with affected communities and front-line professionals. That includes a series of training workshops to local safeguarding children’s boards in areas with a high prevalence of FGM.
As the right hon. Member for Leicester East and the hon. Member for Bristol East (Kerry McCarthy) said, safeguarding is the name of the game here. Safeguarding boards have been slightly behind the curve in getting to grips with this issue. The local level is the right place to hold the ring—it has the appropriate understanding, confidence and knowledge to address the issue across all the different agencies in any location. The training workshops in high-prevalence areas will work in partnership with the Department of Health on a series of FGM conferences and on bringing together all law enforcement capabilities—the National Crime Agency, Border Force and the police—to co-ordinate action to support prosecutions on FGM.
Ensuring that front-line professionals in high-risk areas have the information and training they need to identify and tackle FGM will also be supported by NHS England’s national FGM prevention programme and statutory guidance on multi-agency working, called “Working Together to Safeguard Children”, as well as statutory guidance on the role of schools, called “Keeping Children Safe in Education”. Better data on FGM will also provide high-prevalence areas with the evidence they require to introduce dedicated FGM training and to commission services to support victims.
Various Members raised the issue of schools and education, and I am already on the record as saying that education on FGM has to be mandatory in schools as part of PSHE. Sex education should be compulsory. We are not at that stage, but I assure Opposition Members that it will be in the Liberal Democrat manifesto, as I am sure it will be in theirs. I hope we can move forward on the issue, because I can think of no better place to start raising awareness. In primary school, that awareness raising can be with the parents. I have met the parents of girls at risk. A primary school in Bristol is the first to have an FGM safeguarding policy. I met the head of that school—I am sure the hon. Member for Bristol East knows her—and she is doing a fantastic job with the parents to say, “This is our law. This is our safeguarding policy in our school.” I think that that is a progressive way forward.
The Home Office has launched an e-learning tool so that all practitioners, whether they are social workers, teachers, health care professionals, Border Force or the police, can undertake an introduction to FGM. Well over 8,000 people have accessed that training. There are reforms to social work, education and practice to protect children from FGM and other forms of abuse. Prevention is at the heart of that work to safeguard and protect all girls and women who may be at risk.
The Government are also, as I am sure all Members know, working to tackle FGM internationally. In March 2013, the Department for International Development announced an ambitious £35 million programme to address FGM in Africa and beyond. The programme aims to see a reduction in FGM by 30% in 10 countries in five years, measured by prevalence among nought to 14-year-olds. It is working towards seeing an end to FGM in one generation. It is vital that money is spent overseas to tackle FGM, to persuade communities here who adhere to the practice to stop. The diasporas are even more closely wedded to identity traditions than the mother countries. When Chinese foot binding ended in China, it continued in California for years afterwards. We are intrinsically linked to the mother countries through the diasporas.
We have made huge progress on FGM. We have raised the profile of the issue and made it clear that FGM is child abuse and violence against women. It is a serious crime and we want to maintain our momentum. Next week, to coincide with the international day of zero tolerance for FGM, we are hosting a European conference to ensure we are learning from other jurisdictions. I am sure that the right hon. Member for Leicester East will be particularly pleased to know that representatives from France will be attending that conference.
On the French issue, I have visited France and spoken to the French Ministers. My understanding of the 40 prosecutions is that most of them originated from the prosecution of one very prolific cutter. We have a different system here. We want prosecutions, but I am not sure that the prevalence of FGM in France has been as brilliantly reduced as we might be led to believe by the conversations that we have.
In a sense, we are motoring now. We have to give what we are putting in place a real chance. We want to see more prosecutions, prevent more FGM from taking place, raise awareness of it in our schools and see all our front-line professionals having that training that will make a huge difference. Mandatory reporting will also make a significant difference. On the day of zero tolerance, we will also hold a cross-Government meeting, which I will host with the public health Minister, my hon. Friend the Member for Battersea. Such events offer an opportunity to take stock of what we have done and to continue the drive to prevent FGM and to protect and support victims.
Before I finish, I pay tribute to Efua, the mother of tackling FGM. I am sure other Members in the room will have been present when campaigners and survivors such as Leyla Hussein, Nimko Ali, Fahma and Alimatu have spoken out so bravely. I am sure Members will have heard their stories and will have sat there in wonder and awe that these women have had the courage to do what they have done.
People often ask me why I took up the mission of tackling FGM. In 2010, the Prime Minister appointed me as the international champion for tackling violence against women and girls across the world. These issues all go back to the lack of equality, women’s position in the world, patriarchal societies and the social norms that keep us in our place.
After I was appointed, I was looking across the piece when two things coincided. Daughters of Eve came to see me, took me by the collar and threatened me, saying, “You do not understand.” Before, we had all been using the phrase “female genital mutilation”, but we needed to cut through the issues—that was a terrible use of words. Daughters of Eve said to me, “This is child abuse. You are a Minister. You have to do something,” at which point I got reshuffled. However, what they said worked, and I did do something. When I went to DFID, I said, “We are going to tackle this. We are going to tackle it in Africa. If we do it there, we will have to do it here as well.” The timing meant that the passion Daughters of Eve had for what they were doing in Bristol and other places was combined with what was happening in Africa.
Terrible violence is done to women right across the world, including in the UK. That violence takes all forms—domestic violence at one end and rape as a weapon of war at the other. However, it seemed to me, as the ministerial champion for tackling violence against women and girls overseas, that FGM was totemic, in that it encapsulated the whole agenda. Who could be more powerless than a three-year-old girl who has absolutely no choice, no control and no voice in what is happening to her? What issue could be more meaningful? The idea that someone can come and damage the rest of her life—physically, psychologically, healthwise and in terms of power and control—is why I took up this issue. If anyone ever wonders why, that is why.
This has been a passionate and informed debate. In closing, let me make it clear that we can and must eradicate this terrible practice. I assure hon. Members that the Government fully understand that. Although we are not doing everything the Home Affairs Committee advised us to, we are resolutely committed to fighting FGM.
I am most grateful to all those who have participated in the debate, as well as for the commitments made by the Minister. We in this House can ensure that we continue to raise awareness. I pay tribute to newspapers such as The Guardian and the Evening Standard for the articles they have published on this subject, and to all the campaigners involved. I am glad that the Minister will ensure that the issue is in the Liberal Democrat manifesto, and I hope all the other political parties that have been represented in the debate will ensure that it is in theirs.
Blood Safety (Variant Creutzfeldt-Jakob Disease)
[Relevant documents: Second Report from the Science and Technology Committee, Session 2014-15, “After the storm? UK blood safety and the risk of variant Creutzfeldt-Jakob Disease”, HC 327, and the Government response, Cm 8940 .]
On behalf of the Select Committee, let me say that it is a pleasure to introduce our report “After the storm? UK blood safety and the risk of variant Creutzfeldt-Jakob Disease”, which was published last July. We considered the ongoing health risk posed by variant CJD and examined the steps taken by the Government to ensure that any further transmission of this deadly disease through blood transfusion or other medical procedures is brought to a halt.
This will probably be the last time before I leave Parliament that I will address one of our reports in Westminster Hall, so it would be wrong of me not to put on record my thanks to not only my Committee, but its staff. Dr Stephen McGinness and his team have supported the Committee extremely well during this Parliament. There is someone with a listening pair of ears next to you, Mr Weir, and although he never speaks in these debates, he knows that I have told him how important it is that we have scientifically qualified members of staff supporting Committees such as mine so that our considerations take an evidence-based approach.
I should point out that the report’s title includes an inconspicuous piece of punctuation—a question mark. Throughout our inquiry, the Government expressed optimism that the storm to which our title alluded had in fact gone away. Unfortunately, as our report demonstrates, that optimism might prove unfounded. Like the Government, we hope that the storm is over, but the scientific evidence demands the inclusion of that question mark.
It may not be immediately clear what variant CJD has to do with UK blood supply. In the initial wave of cases, which were related to meat infected with bovine spongiform encephalopathy, the media stories were exemplified by that famous picture of the then Agriculture Minister, John Gummer—now the noble Lord Deben—feeding a burger to his daughter. Although that is the image that people have, three of the nearly 200 deaths attributed to variant CJD are known to have been caused not by consumption, but by blood transfusion.
Transfusions always carry some risk of infection, although in most cases that can be well mitigated. Donations are tested for a variety of pathogens before anyone is cleared for transfusion, and processes are in place to remove or kill the majority of microbes that might be lurking. Donors who are considered to pose a particularly high risk of infection are prevented from donating altogether. The Committee saw those processes on a visit to a major centre in Bristol.
However, several unusual features of variant CJD make it essentially impervious to those risk-mitigation measures. The infective agent of variant CJD is not a virus or a bacterium, as is the case for most contagious diseases, but a prion, which is a type of abnormally folded protein. Proteins, of course, are endemic throughout the body, which makes prions extremely difficult to detect and almost impossible to destroy. If one is to avoid also destroying the useful proteins, one has to be particularly careful. Variant CJD also has an unusually long incubation period—the time between infection and the onset of symptoms—meaning that people could unknowingly carry the disease for many years and give blood many times before appearing to be sick.
It is thought that 67 patients received blood or blood products from donors who went on to develop variant CJD, and three of those patients went on to contract, and then die from, variant CJD themselves. In total, 50% of the exposed patients who were later tested for variant CJD post mortem were found to have been infected. Those are tragic statistics but, thankfully, the numbers are small. As the Government were keen to point out, there have been no recognised cases of transfusion-related transmission of variant CJD since 1999, so the storm, in their eyes, appears to be over. However, the evidence suggests that another may be brewing.
In October 2013, the British Medical Journal published the results of a large research study that inspected more than 32,000 samples of archived appendix tissue for signs of variant CJD infection. Prions were detected in 16 of the samples, suggesting that about one in 2,000 people in the UK—about 30,000 people in total—could be silent carriers of variant CJD. Many of those people are likely to be blood donors. The implications of those findings are, frankly, not clear. However, they are undeniably a cause for concern and, in our view, they warrant further investigation. That was why one of the major recommendations of our report was that the Government should lend their support to research intended to reduce uncertainty about the potential level of silent infection across the UK blood donor pool.
I will give some background about the proposed research. As I have explained, prions are notoriously difficult to detect. A test for variant CJD has remained elusive for many years, but in 2011, a team of researchers from the Medical Research Council prion unit at University college London announced that it had developed a prototype blood assay capable of detecting variant CJD at a dilution of one part to 10 billion. When the assay was tested on 21 blood samples from known variant CJD patients, it accurately identified 70% of them as positive. More importantly, the test returned no false positives from a much bigger group of samples known not to be affected by variant CJD.
It is widely agreed that the next stage of the test’s development would be to carry out a larger study using UK blood donations, which might provide further information about both the effectiveness of the test and the level of silent infection in the UK donor pool. However, the Government appear reluctant to support that study. In their response to our report, they alluded to unspecified “scientific and technical issues” that would need to be overcome and told us that they would seek the views of the relevant scientific advisory committee before making any promises.
[Sir David Amess in the Chair]
Welcome to the Chair, Sir David. That last point is important because the Government’s response failed to mention that the committee in question had already made it known that it was strongly in favour of such a study. It is tempting to conclude that the Government would rather not know the extent of the problem that they might face. To return to my previous analogy, there are clouds on the horizon and a weather forecast is available, but the Government are choosing not to look at it.
Bad weather, to use the same analogy, looms at some of our hospitals. I shall not rerun some of this week’s discussions, which have been adequately handled, but to focus on variant CJD, an unusual feature is that the prions that cause the disease stick avidly to metal surfaces—so avidly, in fact, that surgical-grade stainless steel is used in research laboratories as a tool for transmitting variant CJD. Contaminated surgical instruments therefore offer a very efficient route for person-to-person prion transmission.
The hon. Gentleman follows this matter with great care. He is absolutely right, but I am trying to simplify what is an incredibly complicated subject. The underlying science is very hard to communicate, but I am grateful for his observation.
This issue is known, because there have been several cases of classical CJD being passed on through contaminated surgical instruments. Following two separate incidents in 2011, 59 patients had to be notified that they were at risk of developing the disease because they had been operated on with instruments that were also used on someone who was later found to have been suffering from CJD.
Guidance is in place to help to reduce that risk, but evidence suggests that compliance is poor. Worryingly, it seemed that the Government were not aware of that. They have since promised to work with the Care Quality Commission to ensure that best practice is followed in future, so I look forward to receiving an update from the Minister on that important work.
Ultimately, however, such guidance can be only partly effective, because prions are known to be impervious to standard decontamination processes. The Government told us that that they had spent nearly £10 million since 2001 on trying to solve that problem and they have come very close to doing so. A product initially developed using public funds, and later commercialised by DuPont, has been shown to reduce the risk of surgical transmission more than a million-fold. We were therefore astounded to discover that that product had not been put to use in the NHS, in large part because its use would add an additional step to the decontamination process. That seems to be an example of institutional inertia trumping common sense.
Unsurprisingly, DuPont has ceased development of that potentially valuable product. During our inquiry, we came across other examples of commercial developers withdrawing investment because of the Government’s failure to take up much-needed technologies. I hope that the recently announced innovative medicines and medical technologies review will go some way towards resolving that problem. In the meantime, I look forward to hearing from the Minister how she plans to ensure that those undergoing surgery in UK hospitals are not needlessly exposed to potentially deadly prions. I stress that I am not trying to be alarmist. I have been through medical procedures myself, and I would not want people to be put off in any way from having necessary medical procedures.
Decisions about whether the NHS should adopt particular technologies are currently spread among a number of bodies. The National Institute for Health and Care Excellence is, of course, the largest such body, and is recognised as a world leader in health technology appraisal. However, during our inquiry, we found that similar decisions are being made by a variety of other scientific advisory committees and panels using a range of techniques. We found that a little troubling. If the Government are serious about wanting to ensure value for money for the NHS, all health technology appraisals should be carried out to the same high standard and according to the same basic methodology, wherever they are performed. We therefore recommended that the Department of Health should work with NICE and the Government Office for Science to ensure that best practice is more consistently applied.
The Government have set up a working group to explore differences in appraisal methodology and to set out options for closer alignment. We welcome that move, but we were surprised to find that the group had been set up under the auspices of the Department’s chief economist, seemingly with no input from the Government Office for Science, the Department’s own chief scientific adviser or from the chief medical officer, Dame Sally Davies. When I pointed that out to the life sciences Minister, the hon. Member for Mid Norfolk (George Freeman), I think that he was equally surprised.
The Government explained their decision by stressing that the review would be about the methodological approach to a valuation, not the science itself, which seems nonsensical to me. Health technology appraisal tests rest on an evaluation of both cost and clinical effectiveness. The chief economist is, I am sure, well placed to comment on the former part of the equation, but Dame Sally is vastly more qualified to comment on the latter part. It is simply not possible to remove science from the process. I hope that the Minister has had time to reconsider the Government’s position on the matter. I also want to hear what progress the working group has made.
The Government’s claim that science is peripheral to the process of health technology appraisal is somewhat belied by the fact that it is often the Department’s scientific advisory committees that carry out the appraisals. Almost 70 such committees are dotted around Government, and they are governed by a common code of practice that sets out minimum requirements regarding communications and transparency. Few of those requirements were being met by the SACs that we came across during our inquiry.
The Rapid Review Panel, a SAC responsible for assessing innovative infection prevention and control products, had an extremely limited website at the time of our inquiry and did not seem to publish either an annual report or a statement of members’ interests. Not even the membership of the panel was clearly stated. The Government explained the failures by stating that the panel was not and never had been an SAC, meaning that it did not have to comply with the code of practice. That presumably came as news to the Government Office for Science, which included the panel in its list of SACs, and to the chief scientific adviser, who told us that he met all SAC chairs regularly.
We came across other issues when assessing the work of another Department of Health SAC, the Advisory Committee on Dangerous Pathogens. This time the Government gave us another excuse, claiming that sub-groups and working groups of SACs were technically not themselves SACs, and therefore were exempt from the code of practice. That might technically be true, but it flies in the face of the Government’s reported commitment to openness, which was absolutely reinforced in the document on science and innovation strategy published by the Government just before Christmas.
I began the debate by drawing attention to the question mark in our report’s title—“After the Storm?” We all hope that the storm created by variant CJD has now passed, but the reality is that uncertainties remain. In the six months or so since our report was published, we have seen little evidence of action by the Government to reduce our concerns. The Minister has told us that she is optimistic, but optimism is not a good basis for policy. I hope that she can reveal what the Government plan to do to make our question mark obsolete.
I reinforce a point that I made earlier: statistically, we are dealing with tiny numbers of people. However, at the end of the day, the families affected are real human beings and we should not simply brush aside action in the area because we are dealing with such a tiny group. I hope that the House will take the report as seriously as our Committee and the many brilliant scientists who gave evidence to us.
I will try to be succinct after such a full introduction. That is probably possible. I can hear some puffing from the right hon. Member for Holborn and St Pancras (Frank Dobson), who was the leading light on this issue in the early days. I am delighted to see the Minister in her place, and I am sure that she is delighted to be here as well—at least she is trying to smile. She is probably aware of my long-term interest in and deep concern about the subject. I congratulate the Committee on the report, although I thought that the Department of Health’s response was at best cavalier.
I need to declare a potential interest as a dentist. For example, if the simple cold sterilisation that could be made available were brought in, as I wish it would be, as part of sterilisation of surgical instruments, it would land on me a miniature addition to my own surgical sterilisation costs.
It is probably worth spelling out what variant CJD is, as anyone reading the report of this debate will not understand that unless they have a deep interest in the subject, although perhaps one would not read the debate if one did not. Nevertheless, variant CJD is a fatal neurodegenerative disease originating from exposure to bovine-spongiform-encephalopathic-like prions; as has been mentioned, prions are small particles of protein. Prion infections are associated with long—very long—clinically silent incubations and cause a spongy degeneration of the brain with a horrible and untimely death. By long incubation, I mean decades.
It is also notable that it is probable, although not certain, that carriers might not produce the disease. Given the long incubation period, some will die of other causes first, but as we are living longer we cannot be certain that in time, after decades, the disease might not strike all carriers. Of course, carriers may unwittingly pass the prion on through blood transfusions and on surgical instruments.
Variant CJD is an appalling disease with no cure. The number of asymptomatic individuals with variant CJD prion infection is unknown, but recent research estimates carrier numbers at one in 2,000 adults, a strikingly small number. The disease poses a risk to others via blood transfusion, blood products, organ or tissue grafts, and contaminated medical and dental instruments. The response of this Government, and of the previous Government—with one notable exception further around the table—has been almost bipolar.
To make an exaggerated simplification, the first position in the bipolar response is the idea that as we have not had many recent cases there is no problem; let us wait and see. The second position is that there might be a problem so we should apply the precautionary principle. We cannot have both: wait and see is not a precautionary principle. I hope that when the Minister takes no action she recognises that the absence of evidence is not evidence of absence. Research says that one person in 2,000 is a carrier, the incubation period may be decades, some individuals are more susceptible and some may not be susceptible, although in time that may be proven wrong. Research also says prions are transmittable by blood products and by contaminated surgical instruments, as the prions resist sterilisation on stainless steel.
Over the years, the precautionary principle has been applied, and still is being applied, but only partially. Much has been done slowly over many years. Leucodepletion was introduced, synthesised clotting factors have been provided for haemophiliacs, the prion research unit was set up in Queen square, single-patient use of stainless steel endodontic reamers was made mandatory and non-UK blood supplies were sourced for those born after 1 January 1996.
The application of the precautionary principle indicates that the previous and current Governments accepted that there was or might be a problem. However, they have been partial in its application. The prion unit, with DuPont, have produced RelyOn soak, which deactivates the prion on stainless steel surgical instruments. The report questions the Government’s position on the soak and the Chairman of the Committee has done so today as well. The Government’s response on that matter was poor; I thought the last paragraph of that section was a complete dodge.
DuPont is no longer producing the soak as there is no market. There is no market simply because hospitals, clinics and surgeries in this country are not required to use it; if they were, there would be a market. DuPont and others that are developing the product might then have reason to change the soak so that it could be installed in surgery washer disinfectants, rather than being an additional stage of cleaning. In a Department of Health letter, the Government required dentists to adopt the single-patient use of stainless steel endodontic reamers. The same approach could be applied to the soak through the Care Quality Commission.
Another major failure is in the sourcing of blood products. If one was born after 1 January 1996 and needed blood products such as a transfusion, one would get non-UK-sourced plasma that was virtually certainly prion free. If one was born before 1 January 1996, one would get UK plasma and have to pray earnestly that the donor was not the one in 2,000. Imagine having two children born either side of that date. If for some horrible reason they both needed a blood transfusion, one child would get prion-free plasma and the other would take the risk. If we had a test, we could be fairly sure about excluding the one in 2,000. Professor Collinge and his prion unit team have developed a test, which has been checked by a research programme in the US and proven not to produce false positives. The final stage of that research needs to checked and tested on a large batch of anonymised UK blood samples, which needs funding. The test is one of our greatest hopes, but Ministers and the Department appear to me, and perhaps to the Chairman of the Select Committee, to have sent the test into the long grass of a series of committee inquiries where, if there is any daylight at the end of the tunnel, it is too far away to be seen. If we had the test, blood donors who were carriers could be winnowed out and special measures taken for surgery patients who proved to be carriers. Hence, three small requests to the Minister.
Will the Minister please ensure that the field is set up to enforce the use of RelyOn or its equivalent? If there is an opening for it, and if businesses know that it will be there, I am convinced that they will produce a non- frothing RelyOn that can go into the dishwashers—that is effectively what they are—that every dentist, hospital and clinic will soon be required to use.
I would like to be sure that the prion unit’s last test will be funded, because it does not look like that will happen at the moment.
We must recognise that all patients need to be treated equally from the point of view of blood products. Either everyone has UK plasma or all get non-UK plasma. Because of the evidence, until we have a test, the first alternative is a non-starter. Until we have the test, the same precautionary approach of using non-UK blood plasma for all, regardless of date of birth, is a basic requirement.
I do not want my grandchildren to be the generation that sees the re-emergence of vCJD and to ask me, if I am still around, why my generation did not act. That is not a big ask.
I start by declaring two peculiar interests. When I was Secretary of State for Health, I introduced the leucodepletion of the blood supply, which led to the establishment of the prion unit that now operates at the University college London institute of neurology in my constituency. I have therefore had a constituency interest, as well as a continuing interest, in the brilliant work of the large team run by Professor John Collinge.
The first time I saw the suggestion that variant CJD might be transmitted through blood or blood products was when I was reading a document produced by the Department that had been sent to me in a red box to keep me occupied during the Labour party conference in Brighton. The theme of the document was that Pasteur Merieux, the French pharmaceutical company, was being difficult by refusing to accept any blood or blood products from Britain because of the possibility of contamination by variant CJD. The document then stated that, as a result, we could of course no longer guarantee that variant CJD was not transmitted through blood or blood products. At that point, my eyes popped out and I telephoned the office in London to say, “Get the experts into my room. I am coming back from Brighton this instant.” The meeting included Sir John Pattison, the then head of the Spongiform Encephalopathy Advisory Committee and of the medical school at University college London, and Professor John Collinge, who was at that time at Imperial college. I was there as the representative of the ignorant layperson—I was adequately equipped for both words—but I was glad I was present.
The experts said that it was not certain that CJD could be transmitted through blood or blood products, but that it was a possibility. Some of the people at the meeting, and some of those involved in advising me afterwards, were strongly of the opinion that that was not possible. As the Committee’s excellent report states, however, it was a “prescient” decision to introduce leucodepletion
“at a time when the prevailing scientific view was that blood transfusion would not prove to be a source of prion transmission.”
The balance of opinion at the time was therefore against doing anything. Nevertheless, the next thing I wanted to know, even if nothing was certain, was whether and how CJD was being transmitted. The experts said, “If it is being transmitted, it is probably being transmitted in the white corpuscles, but not necessarily.” I asked, “What can we do about it?” They said that in some cases we already leucodeplete—take the white corpuscles out of the blood—and that we could do that for the whole of the blood stock. I asked how much that would cost—not at that meeting, admittedly, but a week or two later—to which the answer was, “Probably somewhere approaching £100 million.” Having looked at the conflicting evidence, I said, “Right, do it.” I then went over to talk to the Prime Minister about several things. At the end of our little get together, I said, “By the way, I have just authorised spending £100 million on a project in the hope that it’s a waste of money.” I will not report his response to hon. Members because the language was more vulgar than even I use.
I freely admit that I acted as I did because I had observed the BSE crisis, when officialdom had kept punting things to all sorts of special advisory committees and God knows what, with the various Departments involved being what might be described as a decision-free zone. Nothing had been done and disaster had resulted. One of the questions that arose was, “If the disease is being spread in this way, how many people are likely to be affected?” Things that were ludicrously described as computer projections were produced, and figures ranged from about 200 people to some 2.5 million to 3 million, if I remember rightly. Again, officialdom and the expert bodies did not know much more than I did, frankly.
I nevertheless gave the go-ahead, and that has proved to be useful, according to the people who are now giving scientific evidence to the Committee and Ministers. However, the process has been very costly, and one of my few criticisms of the report is that it gives the impression that protecting the blood supply from vCJD costs between £4 million and £4.5 million a year. Leucodepletion costs about £4 million to £4.5 million a year, but a year or two ago, which was the last time I asked a parliamentary question about this, the total cost incurred in protecting the blood supply from vCJD—I think that this was for 2011-12—was £540 million. That is because, for example, we now import plasma, whereas we used to export it. There is a substantial loss of income from our not being able to export plasma and other blood products because of people’s fear of vCJD. These days, fending off vCJD certainly costs more than £600 million, in addition to, as the hon. Member for Mole Valley (Sir Paul Beresford) said, about £200 million a year on synthetic clotting factor for haemophiliacs. The interest in sorting out this matter is therefore not just clinical, not just about public decency, not just ethical and not just patient-centred, because there is a huge financial interest in sorting it out. That money could otherwise be spent on other areas of the national health service, so we need clarification and an end to the uncertainty.
The prion unit at the institute of neurology, led by Professor Collinge, has proved to be invaluable. The people there have done magnificent work. They are the people who came up with the blood test, although that test has been denied the opportunity of full-scale retesting here to try to match and outdo the testing that was arranged in the United States. If we are spending millions of pounds, quite rightly, on that first-class fundamental research at the institute of neurology, why are we indulging in that famous British lunacy of then not getting on with applying that research? That has happened in the case of the blood test.
As the hon. Member for Mole Valley said, there is also the question of the contamination of instruments. Again, it was the people in the institute of neurology—Professor Collinge’s team—who came up with the initial ideas to make use of the fact that the prions cleave to metal. That was then taken further by DuPont, but it was not taken further by the national health service. If there is a threat—it is still an “if”—that would be one way of countering it, and it would not be wildly expensive.
The blood test and the instruments were, in a way, sideshows. They were about trying to do something practical and effective to help as people got on with the fundamental work of trying to come up with a treatment for vCJD, which they have now done. I have a great deal of time for the current chief medical officer, as I have had for all her predecessors—they were all people of great distinction—but she sort of said, “Well, you know, they’ve been given a lot of money, particularly Professor Collinge,” as though he stuffed it in his back pocket and went boozing of an evening. The money has been spent. The unit invested that money—more than £90 million—in fundamental research. It has now come up with what it thinks is a treatment, but it needs £2 million, £3 million or £4 million to proceed with the pre-clinical trials. Having invested that £90 million, however, the researchers are being told, “We can’t come up with the £2 million, £3 million or £4 million to see whether it works.” That seems to be yet another example of British scientific lunacy: doing the fundamental research, but not getting on with applying it.
We therefore have the situation that the institute of neurology has come up with a blood test, instrument cleaning and treatment, none of which has been properly and effectively pursued. I am not vilifying the Minister or any of her predecessors, but quite frankly—the Committee’s report says this—if I had fallen for people saying, “Oh, we have to get 43 different scientific advisory committees to look into leucodepletion,” leucodepletion would not have been introduced, and we would all now be in a much worse situation.
We need some boldness from Ministers. If the Treasury says that we cannot find the money, I suggest that the people at the Department of Health and those with responsibility for science pick a couple of lunatic things that the Treasury is spending money on—it always has some lunatic projects of its own—and say, “We think we deserve a bit more, so you could stop doing x, y and z.” At the moment, we are in danger of, to use the old phrase, spoiling the ship for a ha’p’orth of tar. I cannot think of any rational organisation that would invest in deploying immense expertise over a long period of time, spending £90 million, but then say, “We can’t find £3 million or £4 million to test out the effectiveness of what has been produced.” I hope that Ministers will accept that they are looking stupid, and the worst thing that anybody can do is look stupid. I am an advocate of non-stupidity, if we can possibly have it.
It is a pleasure, as always, to serve under your chairmanship, Sir David. I thank the Chair of the Select Committee on Science and Technology, my hon. Friend the Member for Ellesmere Port and Neston (Andrew Miller), and the other Committee members for their extremely thorough and valuable report, and for ensuring that we have the opportunity to debate this important issue.
I think that we all agree that variant Creutzfeldt-Jakob disease is a deadly illness around which many uncertainties remain. The report “After the Storm?”, the Government’s response and this debate are welcome contributions to parliamentary and public understanding of vCJD, transfusion and prion diseases, and the Government’s action in response to those risks.
The history of blood transfusion in this country is impressive and important. The principle of freely given, unremunerated blood donation operating within the NHS, free of commercial considerations, has served this country well. It was Richard Titmuss who famously described that arrangement as “the gift relationship” and blood as
“a bond that links all men and women in the world so closely and intimately that every difference of colour, religious belief and cultural heritage is insignificant beside it.”
We have come a long way since the UK’s first voluntary blood service was founded by the British Red Cross to help the treatment of servicemen in 1921. Today, approximately 2.2 million whole blood product donations are made in the UK each year and screened for a variety of different pathogens. Those donations are tested, processed and distributed by one of the country’s four blood services. The success of the system hinges on an assurance of the very highest level of safety and risk avoidance. Sometimes, an element of honesty is important on the part of the potential donor, but even more important are procedures to protect recipients of blood and blood products from risk. We should be proud that our UK blood supply has been proven to be extremely safe. In the vast majority of cases, the benefits of receiving a transfusion far outweigh the risk of acquiring a transfusion-transmitted infection.
Sadly, however, we have reached that point only after significant tragedy. Last week, the House debated a report by the all-party group on haemophilia and contaminated blood that looked at support for the thousands of haemophiliacs who were treated with blood that carried the hepatitis C virus in the 1970s and ’80s. In the ’80s and early ‘90s, contamination of the UK blood supply with HIV led to a further 1,200 infections. Since those tragedies, all UK blood donations have been tested for HIV and hepatitis C. Those experiences are relevant to this debate, because the safety measures were implemented only after those mass infection events.
The report “After the storm?” makes a helpful distinction between the known risks that can be well mitigated and the known risks that cannot. Our existing blood safety measures are largely focused on the known risks that we can easily mitigate through measures such as testing and screening. Unfortunately, as we have heard, prions, which are responsible for variant CJD, are invulnerable to those methods, so we need to develop new ways to mitigate those risks. The key question that we have debated today is how far the Government should prioritise such research and development.
It is extremely difficult to draw conclusions, because so many uncertainties remain. However, there are several things that we know. Although it is extremely rare, variant CJD is invariably fatal, and most people die within a year of first experiencing symptoms. Recent studies indicate that tens of thousands of people in the UK could be silent carriers of the prions responsible for the disease, and they may transmit those prions to others. Cases of transfusion-transmitted variant CJD are known to have occurred although, as has been pointed out, that happened 15 years ago. The Government have acknowledged that risk.
Currently we do not use a test to detect the presence of prions, but there are emerging technologies that could mitigate the risk, such as prion filtration and the prototype variant CJD blood test. It is natural to hope that the Government will adopt a precautionary approach and support the development and introduction of technologies that have the potential to mitigate those risks. The report “After the storm?” makes concerning reading in that regard. I take on board the Government’s response that they have not reduced any of the significant steps taken since the late 1990s to reduce the potential for secondary transmission. It is also welcome that the Department continues to allocate its only ring-fenced research budget to research related to prion disease, but the question is whether that is sufficient. In her covering letter to the Government’s response to the report, the Minister wrote:
“There are competing research priorities for our limited funding”.
That must be true, but surely there can be no greater priority than assuring the safety of patients receiving blood transfusions.
The Science and Technology Committee examined several possible technologies that might be developed to militate against the transfusion of variant CJD, and I will discuss some of them briefly. The Chair of the Science and Technology Committee, like the hon. Member for Mole Valley (Sir Paul Beresford) and my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson), spoke about those technologies, but I have further questions about them for the Minister. The development of a test for the presence of the prion is of enormous importance, given that data suggest that the prevalence of sub-clinical disease and infection may be as high as one in 2,000 people. Although this is disappointing, I appreciate that the Government may not be in a position to commit to a prevalence test yet. It is welcome that they have committed to seeking the views of the transmissible spongiform encephalopathy sub-group of the Advisory Committee on Dangerous Pathogens on the scientific and technical issues involved in developing such a test and on the potential value of a blood prevalence study. I would welcome an update from the Minister on how that work is progressing and when the Government will be in a position to make a decision about the value of a prevalence study.
The report examined ways to mitigate the risk of transmission of prions by surgical instruments and the Committee expressed concern about the implementation of guidance on the decontamination of surgical instruments. It is indeed alarming that such concerns exist. As we have heard from the Committee Chair and the hon. Member for Mole Valley, it should be part of local clinical governance arrangements that such a fundamental patient issue should dealt with, reviewed routinely and reported to the board of the trust.
The Government stated in their response to the very reasonable recommendation of the Science and Technology Committee:
“Accordingly, the Department will discuss with the CQC the need for the implementation of decontamination guidance to be addressed in its regulatory activity”.
I find that use of the word “discuss” a matter for concern. Decontamination should be mandated, inspected and assured. Patients might find it worrying that all the Department of Health is prepared to do is to “discuss” with the CQC the need for action on the matter. I would be grateful for the Minister’s assurance that the proper sterilisation of medical instruments will be dealt with as a matter of urgency.
To be fair, I think that the hon. Lady should recognise that the RelyOn is not in a state in which it can be simply used. It is a wash, but if the opportunity were there, it might well be developed for the market so that it could be put into washer-disinfectors. I think that that is perhaps what the discussion is about.
I thank the hon. Gentleman and hope that the Minister will deal with that point. She could perhaps directly task the newly appointed regional public health directors of Public Health England to review instrument sterilisation in all trusts and report directly to her on the matter.
Prion filtration is another possible method of mitigating the risk of transmission of variant CJD. That is the process through which prions are physically removed from blood through the use of highly specific resin ligands. After recommending the use of the technique in 2009, the Advisory Committee on the Safety of Blood, Tissues and Organs decided in 2012 to rescind its initial recommendation, so prion filtration has not been adopted in the UK. The scientific decision making of the committee must of course be respected, so I do not seek to challenge its decision, but the Select Committee’s report raises important questions about the process that is followed through such reviews, and makes some important recommendations.
The report recommends, for example, that the health technology appraisals conducted by the advisory committee should use the same methodology and meet the same high standards as those undertaken by NICE, the UK’s centre of excellence for that activity. The Government have said that work to explore the differences in appraisal methodology between NICE and other health-related bodies, including the Advisory Committee on the Safety of Blood, Tissues and Organs, is being carried out through an appraisal alignment working group. I reiterate the question asked by my hon. Friend the Member for Ellesmere Port and Neston: will the Minister please give us an update on how the work is progressing and when the group will report?
The “After the storm?” report raised concerns that the scientific advisory committees are not currently independent of the bodies to which they provide advice. In response, the Government also said that they would review the terms of reference of the Advisory Committee on the Safety of Blood, Tissues and Organs and ensure that they are clarified appropriately. They said that the advisory committee is planning to amend its code of practice so that future working groups and sub-groups will not be chaired by someone who holds a senior policy-making position in an organisation if the topic under consideration relates directly to that organisation’s interests or activities. Has that work now been completed?
We should all agree that protecting the public from potential harm by transmission of the prion that causes variant CJD—or, indeed, from the transmission of any serious threat to health via our blood service—should be given the highest priority. The Science and Technology Committee has raised valid concerns that some recent Government decisions signal a change from the precautionary approach to variant CJD risk reduction of the late 1990s to a more relaxed approach today. As we have heard, significant questions remain, so I look forward to the Minister’s response.
It is a pleasure to serve under your chairmanship, Sir David. Sadly, I have been left with less time than any of the other hon. Members who have spoken in the debate to respond to the questions put to me, but I will do my best.
Marvellous. My mistake. In that case, I have plenty of time.
In case there is anything I cannot cover in my remarks, I should point out that we have already committed to write to the Committee with a further update before the end of the Session. There are issues where we will have more to report, and I will focus on a couple of specifics today.
Let me start by thanking the Committee for the opportunity to look at the issue again. May I also apologise for the fact that I am holding my notes so far away from me? I have left my glasses at home.
Let’s see how I get on, although I thank the right hon. Gentleman for that kind offer.
First, let me reiterate—I said this in the evidence sessions, but perhaps we did not stress it enough in responding to the Committee—that there is no hint of complacency over the issue on the part of the Government, the Department of Health, me, the chief medical officer or anyone else, although I understand why that question mark is in the title. I would hate for my optimism about our perhaps being in a better place than we were to be characterised in any sense as complacency or as not wanting to keep this area under careful review.
In that respect, I want, like other contributors to the debate, to mention the number of cases. We have had one UK case of vCJD since 2010. The UK’s annual mortality rate per million for all forms of CJD from 1993 to 2012 was 1.1, which, I am pleased to say, is lower than that in France, Spain, Germany and Italy. On secondary transmissions, there is no evidence of any person-to-person transmissions via blood since 1999, as was said in the debate. There is also no evidence of any person-to-person transmissions via surgery or dentistry. However, I accept that the fact that there is no evidence does not mean there is no challenge.
On Government funding, the shadow Minister, the hon. Member for Liverpool, Wavertree (Luciana Berger), referred to the ring-fenced budget. The Department of Health has provided more than £95 million for CJD studies since 2001. It is funding 18 CJD-related research projects with total investment of about £45.5 million. In 2011, it was estimated that about £500 million had been spent on prion-related research.
Professor Collinge has been mentioned. His advocates are here in the form of hon. and right hon. Members who are familiar with the work done by him and his unit. The Department of Health has provided more than £16 million of research funding to the National Prion Clinic, led by Professor Collinge, since 1996. The Medical Research Council continues to provide £6 million annually to fund the MRC prion unit, which is led, again, by Professor Collinge. Members have said that that has been said before, but it is important to stress that it is the context in which the Committee’s report was written.
There was perhaps a slight lack of generosity in the way some contributions to the debate characterised the attitude of the Department and the Government, and I want, therefore, to make two general points about science. I rather disagree with the point made by the right hon. Member for Holborn and St Pancras (Frank Dobson) that if we have spent an awful lot on theoretical research, it follows that we must always seek to apply it. It would be slightly dangerous always to adopt that principle, because that would make the funders of research far more risk-averse. If there was an obligation to put into practice every piece of research one had backed, there would be an inclination to back away from the more risky pieces of research and to back only the winners. That is just a comment on the principle; it does not necessarily relate to this issue.
The second point I hope colleagues would concede is that there is surely a difference between having one set of scientists look at something and then another set of scientists look at it and reach different conclusions and recommendations, and being in any sense complacent. A lot of different people with great scientific knowledge have advised Ministers over the years and have sometimes come to different conclusions or made different recommendations. It is important to stress that in all the ways in which we have responded to the report we have been guided by some very senior scientists. I want to put that on the record.
I find the Minister’s remarks somewhat surprising. As I said in my opening remarks, the Government response alluded to unspecified “technical issues” that they would refer to the relevant advisory committee, but that committee had already recommended that the study should go ahead.
I will update the Select Committee further. We have already committed to submit an additional piece of work before the end of the Session.
I will say a few words about the work undertaken so far. The chief medical officer and I gave evidence to the Committee last April. The report was published in the summer and the Government response in October. In that response, the Government committed to responding with a further update report to the Committee. I subsequently received a letter from the Committee with more than 20 further questions, to which I responded in November. The Select Committee then held a legacy hearing on 3 December at which Professor David Walker, the deputy chief medical officer, and I gave further evidence.
I am extremely grateful to all members of the Committee who have put the issue on Parliament’s agenda and maintained a close interest in it, something that has been clear to me in the relatively short time I have been in post. I will write to members of the Committee, as we have undertaken to do, before the end of March with further updates on some work. That will include an update on the CQC issues that have been raised, which I will not give an update on today.
Let me focus on the potential use of the vCJD blood test. In the response, we made a commitment on that, so I can focus largely on it today. There is the potential to use a prototype variant CJD blood assay, developed by Professor Collinge and his team. He leads the relevant unit, and as hon. Members might know, the MRC is concluding its latest quinquennial review of that unit.
I am pleased to report that—along with two of my Public Health England officials, Professor Noel Gill and Dr Katy Sinka—Professor Marc Turner and Dr Lorna Williamson, the medical directors of, respectively, the Scottish and the English national blood services, met Professor Collinge and his team in October 2014 to discuss the potential use of the prototype assay. At the meeting on 13 November 2014 of the transmissible spongiform encephalopathy sub-group of the Advisory Committee on Dangerous Pathogens, Professors Turner and Gill presented a paper on the possibility of using the assay to carry out an anonymised blood prevalence survey for asymptomatic vCJD, as recommended by the Select Committee.
Members might recall that the ACDP is the independent scientific advisory committee that provides the Government with authoritative advice on all forms of TSE, including all forms of CJD. During the presentation to the sub-group, the professors asked three specific questions. I will update Members on those questions and the ACDP’s responses.
First, with a view to the ability of the assay to detect sub-clinical vCJD infection in otherwise healthy individuals, the ACDP was asked if it had confidence in three qualities of the assay. The first was sensitivity, which is the ability of the assay to give true positive results; in this case, that is the true number of asymptomatic cases that the test could identify in any population. The second was specificity, which is the ability of the assay to give true negative results; in this case, that is the true number of unaffected individuals that the test would identify in any population. The third was reproducibility, which is the ability of the assay to be reliably and repeatedly reproduced outside the centre in which it was developed.
Basically, that process would be to find out whether the assay could be used to identify people with asymptomatic infection, and those who showed no clinical signs of vCJD but who would be presumed at some stage to be potentially infective and/or go on to develop clinical symptoms. My hon. Friend the Member for Mole Valley (Sir Paul Beresford) said that symptoms could develop over a very long period.
The ACDP’s sub-group discussed the issue and agreed that the answer to the first question had to be no, because it has seen no published data on the assay when used in any human or animal samples from individuals without clinically diagnosed disease. Members might recall the February 2011 paper in The Lancet that first gave detailed information on this assay. That paper provided evidence that the assay can give, in seven out of 10 cases, a positive result in blood samples taken from patients with known and clinically diagnosed vCJD. Unfortunately, however, that is not what we need if we are looking for evidence of vCJD in those with no clinical signs. There is no published evidence that provides assurance that the assay, if used in the general population, would give true positive results in those who might be carrying the infection but are asymptomatic.
If a test for this very rare disease—it has been noted that we have had only 14 new cases in the UK since 2005, and only one was after 2010—is used in presumed healthy individuals, it is essential that it is accurate. We have no evidence that the MRC assay can identify vCJD infection in an asymptomatic individual. Those in Westminster Hall with a keen interest in science will understand that undertaking a test of large numbers of individuals when we do not know what a test result means—either for those individuals or, as in this case, for the development of effective public health measures—is not the best use of limited resources.
The second question that the ACDP was asked—
Let me move through the second question; I will be very happy to pick up on any further things in my additional response to the Committee.
The second question that the ACDP was asked was whether it would replace its current UK prevalence estimate of 1:2,000, which is based on data generated by a blood study using the MRC Prion Unit assay. In response to that second question, the ACDP also agreed that the answer to the question—whether to replace the current prevalence estimate—was no. It gave that answer because it is uncertain as to what the blood assay would measure in a general population. Even in the event that a prevalence result lower than the current 1:2,000 figure were found, the precautionary principle, which the Select Committee rightly emphasised in its report, would still apply and the 1:2,000 figure would continue to be used.
Thirdly, given its negative answers to the first two questions, the ACDP was asked what further data it would need to develop confidence in the outcome of any study using the assay. In summary, it suggested that in the first instance the assay developers work with the National Institute for Biological Standards and Control, and with others, to show that the assay can be used to identify asymptomatic infection, and with the blood services to develop the throughput of the assay. If that work progresses successfully, the ACDP will, of course, look again at the issue and we will take its advice on any potential use of the assay.
I turn briefly to the RelyOn issue, as it has been raised. RelyOn is the protein removal soak developed by DuPont, which Members have discussed. Members will recall that this technology has been fully considered by the Rapid Review Panel, which assesses new products that may be of value to the NHS in improving infection control, on two occasions.
Although the RRP raised specific points on the application of the product in practice—my hon. Friend the Member for Mole Valley well described the challenges around it being a soak—it considered that it would be a
“useful addition to available decontamination products”
if it could be correctly formulated. Obviously, it is for the developers to make a commercial decision to market the product, although I have noted what has been said about where DuPont is with that. It is not within the remit of the RRP to influence procurement and the uptake of products in the NHS, but we would always be willing to discuss with manufacturers the potential for adoption of all effective technologies.
The Minister for life sciences, my hon. Friend the Member for Mid Norfolk (George Freeman), takes seriously the ensuring of rapid access to innovative therapies. It is a large part of his portfolio, and that is why he launched the major review of the pathways for the development, assessment and adoption of innovative medicines and medical technology. That very much goes to the point made on whether the process can be speeded up to make it more easily usable.
The review will consider how to speed up access for NHS patients to cost-effective new diagnostics, medicines and devices. It will set out short and long-term options for action by the Government and relevant bodies, including the National Institute for Health and Care Excellence, the Medicines and Healthcare products Regulatory Agency and NHS England. That will make a major contribution to the policy debate and may well answer some of the points made on this piece of technology.
I thank the Minister and apologise for being persistent. DuPont undertook the work because it thought there was a market. When the Department backed away from the market and it became apparent that, if developed, the product was not going to be put through as a requirement, perhaps through the Care Quality Commission, DuPont stopped. There was no market and no interest, so it stopped the project.
I understand the point. We have debated it before, and it was explored in the meeting with him and Professor Collinge. As I said, the Department was happy to discuss the potential for adoption with manufacturers, but the hurdle was the Rapid Review Panel’s rating. That work is ongoing and has moved on in the past year or so. The new Minister for life sciences acknowledged that there are sometimes challenges around the adoption and the speed with which large organisations can adopt these things, and I am happy to keep Members updated on that work.
There is a well established process whereby the Rapid Review Panel assesses potentially useful products. Those achieving a level 1 rating are suggested as suitable for NHS use. It was acknowledged by the DuPont representative on 5 March that RelyOn had reached only the level 2 rating and more work was needed. It would be unfair on the manufacturers of other level 2-rated products to change unilaterally the RRP processes for one product. As it stands, it is not formulated in a way that could be used in standard NHS decontamination processes.
In my remarks, I have offered a potential route forward and an assurance that the area is being carefully looked at by my colleague the Minister for life sciences. He is looking not only at soaks, but devices, other diagnostics and other medicines. I am happy to draw to his attention the view of the Committee and other Members that this product might be an example of where adoption has been delayed or held up.
We have undertaken to give the Committee a detailed update before the end of March on the other points that have been raised. I thank the Committee again for bringing this subject for debate. I am glad I have had another chance to put before Members some of the recent and ongoing developments and to commit to continuing to use our extensive research strategies. I stress, particularly to the Chair of the Committee, how seriously this Government and successive Governments have taken the subject. It was interesting to hear some of the history from the right hon. Member for Holborn and St Pancras. We will update Members shortly.
Thank you, Sir David, for giving me the opportunity and reminding me that I had time available to respond in a little more detail than I thought I could. I thank you, the Committee and Members who have attended the debate.
I thank right hon. and hon. Members for participating in the debate, which has been about a hugely important subject.
I respect the integrity of the Minister on this matter. She needs to be probing some very serious questions. I hope that she insists that her officials get those responses to the Committee and to Members participating in the debate as quickly as possible; it would be unfortunate to leave such an important issue simply hanging because we had the small matter of a general election campaign coming up.
Any chemical assay evolves. I developed some techniques in the world of geology years ago. When I was in Imperial college earlier on, in the school of mines—admittedly speaking to the Labour club—I was reminded of some of the work that I did when I did a proper job a long time ago. Some of the analytical techniques that we were developing then, from a theoretical basis and given the knowledge available to us at the time, have been refined to a very high degree since then because of the development of techniques and technology. Brushing aside issues around the assay on the three questions that the Minister posed is not a satisfactory way forward.
I have heard the story told by my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson) before—of how he told Prime Minister Blair as he left the room about spending £100 million, and the language expressed at that point. However, it takes courage in a Minister and necessary leadership to get things to happen. The hon. Member for Mole Valley (Sir Paul Beresford), too, has been absolutely consistent and persistent in his views and I congratulate him on that.
Given the short time available, it might be sensible if I used the Minister’s good offices to set up a meeting between me, and perhaps other Members participating in the debate, and the life sciences Minister, because some of the issues are worth pursuing.
I remind the Chamber of the conclusions and recommendations of the report. We start:
“Blood transfusions save lives and we should be proud, as a nation, of our long tradition of altruistic donation”—
a point made by my hon. Friend the Member for Liverpool, Wavertree (Luciana Berger), the shadow Minister.
The report is intended not as a scare story, but to increase enthusiasm in participating in this altruism, so that the next generation of people requiring blood products can be confident that they are safe. There is no politics in that. It is a question of driving the science forward, which should not be done simply on the basis of a cost-benefit analysis in the Department of Health. We ought to look at the costs at a societal level.
We have met people in tragic circumstances who have suffered diseases—not only vCJD, but others—as a result of contaminated blood products. The tragedies that they represent, although small in number, carry an enormous cumulative cost to society. We have a moral responsibility to those people to address such very challenging issues. I thank the Minister for her contribution, but ask her to go much further in this hugely important debate.
Question put and agreed to.