Valproate and Foetal Anticonvulsant Syndrome

Sharon Hodgson Excerpts

Thursday 19th October 2017 Commons Chamber

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It really is an honour to be responding for the second time in this Chamber today on behalf of the Opposition.

First, I thank the right hon. Member for North Norfolk (Norman Lamb) for securing this very important debate. It really was much needed so that we could finally discuss in detail, and in the main Chamber, the issues around valproate and what the Government must do to address this injustice. He spoke with passion and obvious outrage on behalf of the thousands of women and children affected by this disgraceful scandal.

I, too, want to thank other hon. Members who have taken part in this debate, including the hon. Members for Congleton (Fiona Bruce) and for Eastleigh (Mims Davies), and my hon. Friends the Members for Newport West (Paul Flynn) and for Heywood and Middleton (Liz McInnes). My hon. Friend the Member for Bury North (James Frith) gave an extremely moving account of how the drug helped him as a young boy, making the point that, when used correctly, it can be a very good drug. We also heard contributions from the hon. Member for Strangford (Jim Shannon), my hon. Friend the Member for Lancaster and Fleetwood (Cat Smith) and the hon. Member for Central Ayrshire (Dr Whitford) who speaks for the Scottish National party. It has been a very good debate.

As we have heard, the issues of valproate and its effects on foetuses are not new. In fact, they span a significant number of years, going as far back as the 1970s and 1980s when the first cases of the effects of valproate were documented. Even recent scientific research has shown that valproate can have an impact on a child’s life, including a study finding that 10% of children exposed to valproate will be born with a major congenital malformation, with 29% requiring additional educational support and 6% being diagnosed with significant social communication difficulties, such as autism.

Although there has been some movement on making women aware of the risks of valproate during pregnancy through the valproate toolkit, there is still far more that should and must be done to support these women and their children who have been so seriously affected by this injustice. The scope of this issue is serious. Data from 2010 show that more than 21,500 women were prescribed valproate. Although not all those women will have become pregnant, or planned to become pregnant, it is worrying that, following the toolkit’s publication, there is still not enough awareness of the risks, with 85% of patients not receiving the booklet and 90% not receiving the pharmacist’s card. It is important that the Minister looks into this matter urgently and ensures that awareness is increased to help to address the lack of knowledge. That could save so many innocent lives from being irreparably damaged.

As part of that, will the Minister be minded to agree that the NHS should make it mandatory for every clinician prescribing sodium valproate to a woman or girl of childbearing age to have a conversation with her about risks during pregnancy, upon first prescribing the drug and at least yearly, before her prescription is renewed?

Over the decades there have been countless opportunities for this drug to be investigated, especially when evidence from the 1980s grew. Yet the various regulatory bodies for medicines have failed to keep their eyes on it as an issue worthy of investigation, with only fleeting references in position papers and reports, and nothing substantial. This is why it is welcome that the European Medicines Agency, in one of its first public inquiries, on 26 September 2017 called together patients, carers, doctors, pharmacists and academics to look into the matter further. It will be interesting to see the outcomes of its investigation when it concludes.

We have a duty to set the mistakes or oversights of previous Governments right, which is why we are here today—to seek justice for the victims of sodium valproate in pregnancy and their families. The Opposition welcome calls for the Government to look into how they can compensate the families who have been so significantly affected.

It must be noted that, as others have said, the drug is an effective treatment. For many it may be the only drug that works for them. Nevertheless, there is a systematic failure to inform women of the dangers of taking valproate. If expectant mothers had had the risks laid out clearly for them, many children would not have been harmed, and I hazard a guess that we would not be debating this issue today.

For those reasons Labour promised, in our election manifesto earlier this year, that we would look into this further by holding a public inquiry if we won the general election. We now make a plea to the Government. The evidence collected by In-FACT shows that despite the Government, pharmaceutical companies and regulatory bodies knowing about the risks for 40 years, that knowledge was withheld from women, which meant they were unable to make informed decisions about their drug treatment during pregnancy. I must ask the Minister: why have we not got to the bottom of this injustice, and is it not about time that we did?

A lot of the issues that we must understand and investigate are historic, yet for some they are still very prominent in their present. Many families are living with the repercussions of not being given the relevant information.

Hon. Members may have watched “Victoria Derbyshire” in recent months, on which valproate has been discussed, including last month when Deborah Mann, who took valproate during her pregnancy, discussed how the drug had affected her daughter, Branwen. Deborah had been given a dose of valproate of 5,000 mg, five times higher than the recommended daily dose of 1,000 mg. Any dose above 1,000 mg is considered to have the largest level of risk. Branwen has had to wear splints every day since she was a little girl. She is in chronic pain every day. She has migraines and problems with her brain and eyes. At just 22, Branwen has been told that she could go blind, have a stroke or even die at any moment.

I recently met the inspirational Janet Williams and Emma Murphy, who a number of hon. Members on both sides of the House have paid tribute to. I now realise that they are in the Public Gallery. They set up In-FACT in November 2012 after two of Janet’s children and five of Emma’s children were diagnosed with foetal anticonvulsant syndrome. We heard in detail from the hon. Member for Congleton the extent of the appalling damage to Emma and Janet’s precious children, and all of it was preventable. Both Janet and Emma campaign tirelessly after being told—in the case of Emma, time after time after time—that these drugs were safe to take in pregnancy. These women did ask the obvious questions when the truth was already well known, and they were still told that these drugs were safe to take while they were pregnant. Can hon. Members imagine how that feels? As a mum, I would be absolutely furious—we all would. I would want answers. I would want justice, and so do Janet and Emma.

It is approximated that, since 1973, 7,000 children have been harmed by exposure to valproate. No doubt there will be many other families who have failed to conceive or who have had stillbirths or miscarriages—all because of this drug. That is why we must get answers, but it is also why we must look at what compensation we can give these families because of the failure of the NHS to protect and support them. The idea of compensation has been established by our neighbours across the channel, where the French Parliament has recognised the true scale of this injustice and established a fund worth €10 million to support the victims of valproate and their families.

Opposition Members believe that mistakes should be recognised, addressed and accordingly compensated for. We also believe that burying our heads in the sand and ignoring the demands of the victims goes against the nature of justice and righting the many wrongs of the past. These families must be supported and allowed to have a full investigation into the failures and damage they have had inflicted on them.

The Minister cannot ignore the scale of this tragedy and the numbers of people who have had their lives so adversely affected not through any fault of their own, but due to medication they were prescribed by the NHS. We are here today to ensure that the Government wake up to the enormity of this scandal and take immediate action.

More must be done to make women aware of the risks of taking valproate during pregnancy, and to ensure that the injustice that has gone on for far too long is righted, with answers found and support provided to these families, who have seen their lives turned upside down because of what can only be described as a cover-up. The Minister should and must listen to what has been said today. I hope he will assure the House that he has constructively listened and that he will start the process of righting this pernicious wrong by holding a full public inquiry and properly supporting these families. They need, want and deserve justice. They should, at long last, receive nothing less.

Surgical Mesh Implants

Sharon Hodgson Excerpts

Wednesday 18th October 2017 Westminster Hall

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Owen. I thank my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) for securing this very important debate and for her excellent contribution. The Opposition fully support her four asks of the Government.

I commend all other speakers for their thoughtful and passionate contributions, and I thank their constituents who allowed their experiences to be shared with us. I especially want to thank Kath Sansom, who leads the Sling the Mesh campaign, for all her hard work in uniting the women affected by vaginal mesh implants and for raising awareness of the tragic impact that mesh implants have had on so many lives. I also thank other hon. Members who have spoken out about this issue for such a long time—in particular, my hon. Friend the Member for Pontypridd (Owen Smith), who spoke with such knowledge and passion. It was vital that he took part in this debate, and I thank him for everything he has done on the issue.

The experiences we have heard about today are incredibly distressing. I have the utmost sympathy for those suffering because of mesh implants. We are here to stand up for those women, and we seek answers and Government action on their behalf.

Let us start at the beginning, when women are told that the best course of action is to have a mesh implant. They are told that the procedure is quick and cheap, but, as we have heard, the low financial cost of the implants is far outweighed by the huge human cost to those women for the rest of their lives.

The NHS and the MHRA say that the risk of complications is low, at 1% to 3%, but a report by nine leading medics put the risk much higher, at 15%. If leading bodies and medical professionals cannot agree, how can patients be expected to make informed decisions? Health professionals are supposed to outline clearly and explicitly the risks of any operation that a patient is asked to undergo to ensure they can weigh up the risks and benefits for themselves.

As we have heard, the mesh implants are made of the same material as some drinks bottles. They can shrink, twist and curl at the edges. The material can degrade, cut through internal tissues, poke through the vaginal wall and stick to organs, causing pain, incontinence, urinary infections and a loss of sex life. Marriages have been destroyed and people have been left unable to walk, work or even to pick up their young children. Knowing those risks, how many in this Chamber would consent to a mesh implant? It is time to take women’s health and wellbeing seriously. They need to be listened to. Their voices need to be heard and their concerns believed so we can put right this injustice and prevent it from going on any longer.

Since this debate was announced, I have been inundated with emails and tweets telling harrowing stories of how women have been affected by vaginal mesh implants. I am sure everyone in the Chamber has received the same sort of emails. Just last night—very late in the day—I received an email from Sling the Mesh with an attachment containing 210 emails out of the 400 it received following the Minister’s answer to my question during Health questions last week, when she said there is not enough evidence to ban the mesh. Those emails are packed with evidence, and I am very happy to pass them on to the Minister. They all detail how the implants have been life-changing, but unfortunately not for the better.

Julie has had to give up her job as a paramedic, and is now trapped in a world of pain and medication. Kath has lost her passion for mountain biking because it is now impossible to get on the bike. Suzi says that her pain consumes her every day.

Another woman, Tina, also shared her experiences. For four years, she went to her GP and accident and emergency several times with excruciating pain, and was sent from pillar to post. She was told that the pain was due to irritable bowel syndrome, painful bladder syndrome and a slipped disc, and that the mesh implant was absolutely not the problem. After four years of searching for answers, she went private and spoke to a surgeon who finally believed her pleas about her pain and partially removed the mesh. She says that her recovery has been successful and she is no longer in pain, which is excellent, but four years is such a long time to lose. We know that many, many women are unable to go private to end their trauma, but they should not have to do so.

After this debate, there is a lobby of mesh-injured women, which I encourage the Minister to attend. We will be joined by Dr Robert Bendavid, who has flown in overnight from Canada. That shows that this really is a worldwide scandal. Many countries, including our own, are just waking up to the horrors of vaginal mesh. In Australia the Senate is holding an inquiry, and in the US vaginal mesh has been considered a high-risk device for nearly a decade. As we heard, vaginal mesh has been suspended in Scotland since 2014, yet across the border the Government have rejected a ban in England and have failed to empathise with the approximately 8,000 women who have been admitted to hospital with a mesh complication. That is not surprising, considering that just 1,000 mesh admissions have been reported to the MHRA as a mesh-related issue. Surgeons are clearly reluctant to report that mesh is the issue, which lets their patients down and distresses them further.

Our next concern is what the Government are going to do to support women who have had to leave because of the effect of vaginal mesh. Most GPs do not attribute the pain to the mesh, so it is very difficult for those women to claim personal independence payments, disability living allowance or any other benefits. They have to rely on their families’ finances, which is incredibly frustrating and distressing to the victims, especially those whose families are unable to support them. We must also consider the women who are suffering in silence and have not come forward yet because of the intimate nature of the issue. After hearing of the experiences of others, some women may be embarrassed or just too scared to come forward for fear of being dismissed as a hysterical woman.

At Health questions last week, the Minister said that a NICE update on vaginal mesh implants is expected at the beginning of next year—my hon. Friend the Member for Pontypridd also mentioned that—but that is too little, too late for the approximately 200 women who will get a vaginal mesh implant on the NHS between now and then and the thousands of women who have already been affected. One of my constituents reached out to me to say that she is worried because she is due to have that surgery soon, and she asked for my advice. Obviously, we cannot give medical advice, so I told her to watch this debate and speak to a surgeon. If there is a chance that a car or an aircraft could cause harm, it would be immediately recalled while the problem was investigated. Why does the precautionary principle not also apply when the health and wellbeing of thousands of women is in jeopardy?

Last week, the Minister said there was not enough evidence to warrant asking the MHRA to reclassify these procedures, but there was so little evidence to justify beginning them in the first place. What exactly is she waiting for? Given what we have heard today, I hope she will recognise the urgent need for action on this issue and justice for those women. I hope she will take these calls back to the Department of Health and ensure that no more women are subject to the risks of vaginal mesh implants. That is why the Opposition are calling for an urgent public inquiry into the number of women adversely affected by vaginal mesh implants and into why the safety of so many women was disregarded. We urge NHS England and NICE to act immediately to update the guidance and suspend the use of vaginal mesh today. It is our duty to ensure that the failings are understood and corrected so that they never happen again. That should be a matter of urgency for the Minister and the Government, and I trust she will respond positively to these calls.

[Albert Owen (in the Chair)]

I remind the Minister to allow the last word to the mover of the motion.

Oral Answers to Questions

Sharon Hodgson Excerpts

Tuesday 10th October 2017 Commons Chamber

[Jackie Doyle-Price]

I am absolutely aware that many women experience substantial side effects and complications following this procedure. Equally, however, many women also experience considerable relief from symptoms. We need a good review of the evidence to make sure that we adopt this procedure only when it fully suits women and that women understand the risks associated with the procedure. But I fully sympathise with the hon. Lady’s constituent.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is deeply worrying, though, that this procedure was introduced with so little evidence to support it. I think we all have to agree it has led to unacceptable complication rates for certain products. Will the Minister heed the words of Professor Heneghan and hold a public inquiry into the numbers of women adversely affected and why the safety of so many women was disregarded?

[Jackie Doyle-Price]

I say again that many women have received relief from their symptoms following this procedure, but we need more evidence before we can properly review it, so it is important that we allow NICE to undertake its work so that we can take a clear view. Any procedure comes with risk—no surgery is without it—but obviously the more evidence we can gather, the better we can advise women of those risks.

Contaminated Blood

Sharon Hodgson Excerpts

Thursday 20th July 2017 Commons Chamber

[Jackie Doyle-Price]

I say to my right hon. Friend, and I have repeated this in other discussions as well, that the Cabinet Office is very closely involved in this, and this opportunity has given me the time to make that clear to the House. The Government are listening; we want to consult as widely as possible. No decision has yet been taken, but the Cabinet Office is closely involved in all the consultation we are currently having.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is disappointing that we are here again today, so soon after last week’s announcement. A week ago, this House united in agreement to finally facilitate justice for those tragically affected by this scandal. Yet, as we have heard, in recent days Ministers have reneged on last week’s promises and run roughshod over the affected community.

[The Minister of State, Department of Health (Mr Philip Dunne)]

indicated dissent.

[Mrs Hodgson]

The Minister of State may shake his head, but that is how the community feel; we have spoken to them. There are three key questions that the Under-Secretary before us this morning must answer, and I hope she will be more forthcoming with much-needed answers than she was to my hon. Friend the Member for Kingston upon Hull North (Diana Johnson).

Understandably, the community have deeply held suspicions when it comes to the Department of Health, so why are Ministers ignoring these concerns and the demands to facilitate an inquiry through another Department, such as the Ministry of Justice? This concern has been well documented in the letter to the Prime Minister by my hon. Friend, the Haemophilia Society, the 10 campaign groups and the law firms Collins Law and Leigh Day. Why does the Minister think the Government can so easily disregard all these people?

Events over the past few days have shown that last week’s promise to consult, engage and listen to the community was simply warm words. The audacious move to hold a roundtable meeting this morning with so little notice to potential attendees from throughout the UK has hindered many from being involved in the process of setting up the inquiry. Will Ministers explain why the meeting was held at such short notice? Who did they plan to invite so that the meeting was properly consultative? In the end, who was scheduled to attend following the mass boycott by many of those invited, who felt that the offer of a meeting was a slap in the face?

It is important that the inquiry is held sooner rather than later, but not at the risk of jeopardising justice. Will the Minister publicly outline, now, the timetable for the inquiry? Do the Government intend to initiate the inquiry in September? If so, why has that not been made public? Why is it that we must bring Ministers to the House again to make this clear? Does that not go against everything we were promised last week? The Minister must remember the promises made just last week and ensure that consultation is central to the whole process; otherwise, the Government will fail this community, who must have the justice they so rightly deserve.

[Jackie Doyle-Price]

It is in taking forward the consultation that we are delivering on the commitments made last week. We made it clear then that we wanted to get the inquiry going as soon as possible because, frankly, these people have waited long enough for answers. We have not ignored the concerns expressed by many about the role of the Department of Health in the inquiry. I repeat: no decision has yet been made and the Cabinet Office is closely involved in taking the matter forward.

As for the complaints about the short notice of the meeting organised by the Secretary of State this week, it is because we want to hear directly from the people affected as soon as possible that such a meeting was arranged before the House rises for recess. This is just the start. We want there to be good, effective dialogue because, as the hon. Member for Washington and Sunderland West (Mrs Hodgson) and the rest of the House will appreciate, it is important that we all inspire confidence in this process. Given the cross-party support we had when the inquiry was announced, it is disappointing that we are now getting bogged down in the process.

Organ Donation: Opt-out System

Sharon Hodgson Excerpts

Thursday 13th July 2017 Westminster Hall

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is an honour to serve under your chairmanship, Ms Buck. I thank my hon. Friend the Member for Barnsley Central (Dan Jarvis) for securing this debate, his excellent contribution and all the work that he has done in recent weeks to raise awareness of the need for more people to become organ donors. I commend other hon. Members for their thoughtful contributions to this debate; the Daily Mirror for raising awareness of organ donation since the case of Max Johnson, a nine-year-old boy in need of a new heart; and the more than 9,000 people who signed the Change.org petition.

I also pay my respects to other hon. Members who have brought this issue to our attention over the last decade or so. They include my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh), who introduced a private Member’s Bill on this topic back in 2004, and my hon. Friend the Member for Newport West (Paul Flynn), who introduced a private Member’s Bill more recently and who spoke so well today.

I will quickly set the scene on organ donation in the wider sense and then move on to the situation in countries such as Wales and Spain, in which opt-out systems have been introduced. Finally, I will talk about three tests that Opposition Members would like the Government to look at, if such a system were implemented in England, to ensure that patients, NHS staff and community groups could have confidence in such a change in the law.

There is no doubt about the need for more organ donors in England. We have heard about that so clearly today. With so many people on the waiting list for new organs, it is important that we get more people signing up to donate their organs so that we can ensure that more people have the chance to live. That is why it is welcome that in a written answer last year, the then Public Health Minister, Nicola Blackwood, confirmed that since 2008 organ donation across the UK had increased by 68% and transplants by 47%, and that 2015-16 saw the highest ever deceased donor rate in the UK, with 1,364 deceased donors resulting in 3,529 transplants.

However, as we have heard, there is still a lot more to do because, tragically, 1,000 people every year die while waiting for a transplant. As we heard from my hon. Friend the Member for Barnsley Central, 6,388 people in Britain need a transplant. That includes 183 children. It also includes Rebecca, the adult daughter of my hon. Friend and constituency neighbour the Member for Sunderland Central (Julie Elliott). I send my hon. Friend, Rebecca and all her wider family my best wishes, as I am sure we all do.

Like the hon. Member for Strangford (Jim Shannon) and, I am sure, others here today, I am a card-carrying organ donor. As soon as I became old enough to carry a card, I did, and that was also because of a direct family experience of someone requiring organ donation. My Aunty Ella was one of the pioneers of organ donation when she received a kidney transplant at the fantastic Freeman Hospital in Newcastle. That was about 50 years ago. I have just looked this up: the first organ donations at the Freeman were in 1967, so my Aunty Ella was literally one of the first. She had a very young family at the time. I was born in ’66, but I can remember being told that all she wanted was to live long enough to see her children grow up. Well, she saw her children grow up, get married and go on to give her grandchildren. That is what organ donation is all about: it gives people a future.

There are issues, though, when it comes to black and minority ethnic communities. NHS Blood and Transplant reported that 66% of people from BME communities in the UK refuse to donate their organs, despite being more likely to need a new organ because of a predisposition to certain illnesses, such as diabetes and hypertension. I will cover that issue when I come to the three tests that we would need to set. It is why it is welcome that we have had an opportunity today to debate this issue and everything that comes with it and to think about how we go about improving organ donation, alongside considering what my hon. Friend the Member for Barnsley Central set out on the principle of an opt-out system.

Currently, we know of two countries in which opt-out organ donation systems work: Wales, which we heard quite a bit about today, and Spain. As we heard, Scotland is also considering how it can introduce an opt-out scheme. In Wales, the system was brought in via the Human Transplantation (Wales) Act 2013, which came into force in 2015. The new law sets out that those who live and die in Wales will be deemed to have given consent for their organs to be used unless they have explicitly said otherwise—that is the opt-out.

According to the Organ Donation Wales website, a public awareness campaign before the change in the law came into effect resulted in the numbers of organs transplanted increasing from 120 to 160. NHS organ donation statistics have shown an 11.8% increase between 2014-15 and 2016-17 in people in Wales opting in to donate their organs—the highest increase among England, Wales and Scotland. However, a written answer from the Minister present today, based on NHS Blood and Transplant figures, stated that

“there has been no notable change in Welsh deceased donation figures since the change in legislation”.

This is backed up by NHS organ donation statistics, which show that despite the opt-out system in Wales, there were more deceased organ donors in England and Scotland. That could be because the system is still in its early days; people who have not opted out are still alive and have not yet been able to donate their organs.

Further afield, our friends in Spain have had a soft opt-out system since 1979, in which consent is presumed in the absence of any known objection by the deceased, but family consent is still sought. The implementation of that system led to a small increase in organ donation and transplant, but there was a dramatic increase after 1989 when the Spanish Government made a big push to reorganise organ donation, as a result of which there was a medically trained transplant co-ordinator in every hospital by 1999. However, as a 2012 British Medical Association report stated, there are likely to be differences between the UK and Spain’s performance on organ donation because of their different approaches to resources and clinical practices. For example, Spain has a higher number of intensive care beds, different ICU admissions criteria and end-of-life practices, and the use of higher-risk donors in comparison with those used here.

Nevertheless, those two examples give us food for thought on the change in organ donation rules in England. They show that if we implement this policy, we need to get it right. It is important that we learn from what has already happened, adapting and using what we learn from other countries to get it right in this country. I hope the Minister and her officials will be busy doing that after the debate.

Labour will set three tests for the Government if any new organ donation system is introduced in England. First, they must obviously ensure full public awareness of any change in the organ donation rules. Secondly, they must ensure that medical and healthcare professionals are involved in designing any changes to the system and that they have the support to raise awareness among the public. Thirdly, they must promise to work closely with community groups to ensure that cultural and religious views are fully consulted on and taken into account before any change is introduced. Those three tests are based on work done in other countries, notably Spain and Wales, but also on the current situation across the UK, where there have been documented issues with engaging with BME communities on organ donation.

Organ donation and transplantation is a sensitive issue, as we have heard in this debate. Many people have strong and differing opinions on it, and it is crucial that the Government ensure that all voices are listened to so that we can come up with a solution. These real problems must be addressed. We know of many people who are on transplant waiting lists for far too long. Sometimes people die because they have been on the waiting list for years without a match to save their lives. We need considered action by the Minister and the Government. They must look at the issue carefully, consult with the public, ensure that solutions are found and bring about the improvements needed. I trust that the Minister will endeavour to do just that.

Contaminated Blood

Sharon Hodgson Excerpts

Tuesday 11th July 2017 Commons Chamber

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

Thank you for your guidance, Mr Speaker.

First and foremost, thanks must go to my outstanding hon. Friend the Member for Kingston upon Hull North (Diana Johnson), who has so valiantly campaigned on this issue for numerous years now. Without her and the dedicated resolve of her and all those she cited who have been involved in this campaign, we would not be where we are today. Thanks must also go to the former Member for Leigh, Andy Burnham, for the debate he led at the end of the previous Parliament, for which I had the honour of being present. He helped to add expediency to this issue with his commitment to go to the police with the evidence he has if the Government failed to come forward with an inquiry to seek justice for those who have been neglected

For too long, the contaminated blood community have been simply failed by their Government and ignored by those who have let the demands of those affected fall on deaf ears, leaving the community without justice. It is very welcome—as we have heard in the news in the past hour and a half or so—that an inquiry may finally be happening, and I look forward to hearing further details from the Minister when he responds. I am grateful that he and you, Mr Speaker, have allowed me to speak first so that he can answer the questions I pose. This is a rather unusual format, and I had no prior knowledge that it was going to be changed. I hope that other Members who speak and pose questions will get a response from the Minister; I do not know whether he will get two bites at the cherry or will have to intervene to answer other Members’ questions.

This emergency debate is timely and allows the House to have its voice heard fully, which is right after the decades of neglect the contaminated blood community has faced. At any point prior to 12.30 pm, when the announcement was made in the news, the Minister could have come forward and made a statement. That would have saved my hon. Friend the Member for Kingston upon Hull North from having to apply for an emergency debate yesterday. It feels like the order of things has been a little forced, and it is sad that it has had to be forced in this way. But we are where we are.

Labour Members are resolutely in favour of a Hillsborough-style public inquiry, as we made clear in our manifesto a couple of months ago—my hon. Friend the Member for Kingston upon Hull North and I pushed for that to be included. The Labour party believes that that style of inquiry would get to the heart of the problems that unfolded in the 1980s and hold to account those who were to blame for this scandal, before it is too late. It is not just our party, but all the parties—especially those on the Opposition Benches—that have made a commitment to stand up for those people seeking justice. That was so clearly documented in the joint letter, which was published on Sunday, from the leaders of every single opposition party here in this House, including, I am pleased to say, of the Democratic Unionist party.

Last November, in a debate secured by my hon. Friend the Member for Kingston upon Hull North, we discussed a whole host of issues that this community faces, including how people could be compensated for the terrible events that have occurred. Today, we are here to debate the fight for justice, which should have happened a lot sooner.

In my contribution, I want to impress on the Minister two key points: first, that the previous two inquiries have, categorically, not been sufficient in seeking justice, which is why a Hillsborough-style inquiry must be actioned; and, secondly, that the evidence presented so far is clear that if we are to have truth and reconciliation after the murky covering up of this scandal, then the strongest of daylight must be shone on every aspect, leaving no stone unturned.

The two previous inquiries—the Archer inquiry in 2009 and the Penrose inquiry in Scotland in 2015—did not go far enough in the eyes of the affected community in getting the truth and justice that they deserve. The Archer inquiry, which was not Government-backed, failed because there were no Department of Health witnesses giving evidence to the convened panel. The Penrose inquiry also did not go far enough in seeking the truth, as it was unable to compel witnesses from outside Scotland when, at the time of the scandal, most, if not all, of the decisions were made in Whitehall. That failure to compel witnesses to attend from outside Scotland meant that the inquiry failed to provide the justice and answers that people from right across the UK deserved.

There are many allegations around this scandal, ranging from Department of Health officials destroying evidence as part of the cover-up, to victims’ medical details being tampered with to hide the cause of their infections.

[Ian Austin]

Two of my constituents have two particular matters that they want the inquiry to consider: first, one said that he was infected with hepatitis C and exposed to the HIV virus, but was not informed of that by the NHS until years afterwards and he wants to be assured that the inquiry will reveal why the truth was hidden; the second wants to know about doctors and scientists being paid by the drug companies and about the precise nature of those deals. He thinks that those deals have to be really properly and rigorously exposed by this inquiry, so that we can get to the bottom of whatever vested interests existed during this scandal.

[Mrs Hodgson]

I thank my hon. Friend for his intervention. The evidence on those things has been well documented, especially by the former Member for Leigh and my hon. Friend the Member for Kingston upon Hull North. Those who have lived with these conditions, who are brave enough to come forward—and who are at the sharp end of this heinous negligence and the recent uncovering reported in the Daily Mail last week—have proved just how important it is that a Hillsborough-style inquiry is set up.

[Catherine West (Hornsey and Wood Green) (Lab)]

Does my hon. Friend agree that the report, “Self Sufficiency in Blood Products in England and Wales” is unauthorised, and could be perpetuating inaccuracies and outright lies, as my constituent says in a letter to me?

[Mrs Hodgson]

All of this evidence will have to be examined. In recent days, constituents affected by this scandal have been in contact with my office with intricate details that must be addressed. It is important that those questions, no matter how small they may be, are answered, as they reflect the issues that have inextricably affected that person’s whole life. It is most important that those issues are addressed, so that those who have lived with the ramifications of this serious negligence can finally have the justice that they deserve.

Getting to the bottom of the allegations and the evidence and having a full and frank inquiry that brings justice for the many people affected are the reasons why we must have this inquiry. As the joint letter by the Opposition leaders said, if a panel were to be convened, it must disclose any and all documents related to the scandal, which involves the victims at every stage; and it must compel all parties involved to participate in the disclosure process and not to hinder justice any further. It must also investigate the events leading up to an individual’s infection and the aftermath, including allegations of medical details being tampered with, whether people were unknowingly tested for viruses without their knowledge and whether enough was done to identify those at risk of infection. As part of this inquiry, there must also be an investigation into the role of profit-making American firms, which supplied the blood factor concentrates to people with haemophilia.

Although none of this will bring back loved ones and those who have died as a consequence of this scandal, or change the life circumstances of those who are alive today living with these conditions inflicted on them, there is still something that we can do, which is to hold an inquiry. It is the very least that we can do. The thousands of people affected by this scandal must be supported and we must stand beside them in seeking justice, as that is our duty as elected representatives of the public.

I want to conclude with this final remark: none of us here has a magic wand—I know that our constituents think that we do—and we cannot turn back time and stop this scandal happening. Sadly, that power does not exist, but the power that does exist, at the behest of the Minister before us today, is that of facilitating the justice for those who live with the aftermath of this scandal. Here, today, we can send a message—a loud and strong message to those who campaign on this issue day in, day out—that Parliament has listened and is on their side. We in this House have heard them; we in this House are there with them; and we in this House will do all that we can for them in their quest for justice. We cannot let them down. We can help facilitate the truth once and for all. Parliament is listening to the individuals who have spent decades fighting against the system to get the truth that they seek, and the Government must listen to Parliament. Parliament is saying: fix this, provide those thousands of people who never asked for this to happen to them with the justice that they so rightly deserve. We cannot fail them any longer.

Oral Answers to Questions

Sharon Hodgson Excerpts

Tuesday 4th July 2017 Commons Chamber

[Steve Brine]

Yes, absolutely. Local authorities have an obligation to do that, but as I said to the new hon. Member for Ipswich (Sandy Martin), it is important that local plans come forward alongside the new national plan. Local solutions are needed for different areas, and that will be the case in my hon. Friend’s borough just as it is in my area of Hampshire.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

Last week marked the 10th anniversary of the smoking ban across the UK, but sadly the celebration was dampened by the fact that we have yet to see the Government’s new tobacco control plan, which was promised in December 2015. The previous two Health Ministers I have shadowed repeatedly said that we would see the plan shortly, but they failed to set out an updated strategy for working towards a smoke-free society. I welcome the Minister to his new post—we have worked well together in the past on the all-party parliamentary group on breast cancer—and I am hoping that, although he has not yet given us a date for the plan, he will be able to give us an indication. Is it going to be published before Christmas?

[Steve Brine]

I thank my hon. Friend for her question. I think I can call her that; we have worked closely together in the past. I am new to my ministerial post, but I have been through the plan, and it is I who has to stand up and defend it. I want to be sure that it is right and that I am as happy with it as everyone else in the Government. My intention is that it will be published before the summer recess.

HIV Treatment

Sharon Hodgson Excerpts

Wednesday 29th March 2017 Westminster Hall

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Main. I thank the hon. Member for Finchley and Golders Green (Mike Freer) for his excellent chairmanship of the all-party parliamentary group on HIV and AIDS, for securing this important debate and for his comprehensive opening speech. It was a tour de force.

I also thank the other hon. Members who have contributed to the debate. I thank the hon. Members for Strangford (Jim Shannon) and for Linlithgow and East Falkirk (Martyn Day), my right hon. Friend the Member for Exeter (Mr Bradshaw) and my hon. Friends the Members for Hove (Peter Kyle) and for Bristol West (Thangam Debbonaire) for their excellent and knowledgeable speeches and interventions. They will all have given the Minister much to think about.

We have come a long way since the height of the HIV/AIDS epidemic of the 1980s, but that does not mean that we should be complacent in our approach to the disease now. Across the UK, an estimated 101,200 people were living with HIV by the end of 2015; 87% of them had a diagnosis, and 96% of those diagnosed were accessing treatment. Although they are a minority of people in the wider population, they are a significant minority that we cannot let down when it comes to their care and treatment.

The number of people receiving HIV care in 2015 in England was just over 81,000. That is a 73% increase in the number of people accessing HIV care since 2006. In part, that is welcome, as it means that more people are accessing care that can improve their lives, but it also provides us with reasons to ensure the future quality of care provided, and that is the crux of why we are here today to debate this issue.

As the APPG highlighted, it is understood that since the passing and implementation of the Health and Social Care Act 2012, there have been growing complications with the commissioning and provision of HIV services across the healthcare system. In the rest of my contribution, I will touch on the Health and Social Care Act’s impact on HIV services, but I will also expand into other areas, such as the cuts to public health budgets and the worrying trend of decommissioning of HIV services, and finally I will touch on issues regarding PrEP.

Since the passing of the Health and Social Care Act, there has been a significant fragmentation of our NHS and wider health services. During the passage of the Act, Opposition Members felt that it was an unnecessary top-down reorganisation. The case of HIV services proves exactly how that fragmentation is causing consequences for the future of vital services. The creation of CCGs and the devolution of public health to local authorities have fragmented HIV services across various bodies, with no coherent commissioning and oversight. Currently, services are failing to maintain the standard that patients expect. That is down to commissioning responsibility not being clearly defined under the Health and Social Care Act. Although the coalition Government argued that the Act would ensure the streamlining of services, the opposite has clearly been the case for HIV services.

I therefore want to push the Minister on what she is doing to look into the APPG’s recommendations, especially about joint commissioning for support services by NHS England and CCGs, along with co-commissioning of HIV and sexual health services by local authorities and NHS England. Another issue that the Minister must look at—I raise this repeatedly with her—is public health funding. The cuts to services further exacerbate the problems that HIV services face because of commissioning responsibilities being unclear, which is pushing services to walk away from their responsibilities.

I know that the Minister will reference the funding going into regular HIV testing and the promotion of safe sex, along with the HIV innovation fund, but the impact on funding cannot be ignored. Last week, the National AIDS Trust published a report showing that in England, there has been a 28% decrease in the expenditure between 2015-16 and 2016-17. That is on top of the cuts to HIV support services, or decommissioning of said services, in Lambeth, Southwark, Oxfordshire, Portsmouth and Bexley. Although public health budgets are only one part of the funding streams for HIV support, treatment and care, they are nevertheless an important part of the pathway, as cuts to sexual health services more broadly are detrimental to HIV care. The £200 million in-year cut and 3.9% cut year on year will only have a negative impact on the future of all sexual health services, including those for HIV. The Minister must seriously address that false economy, or risk seeing a public health crisis that could easily have been avoided.

[Thangam Debbonaire]

I thank my hon. Friend for the excellent speech that she is making. I want to add my support for what she has just said, and perhaps go a bit further. Does she agree that the Minister needs to address the fact that the failure to address preventive services will only store up costs and problems further down the line, and that when there are cuts to public health grants, those services need to be ring-fenced or protected in some other way so that we are not storing up problems for the future?

[Mrs Hodgson]

I thank my hon. Friend for that helpful intervention. I agree with her absolutely. The whole point of preventive services—HIV and sexual health services are preventive—is to save money, and lives, further down the line. We regularly debate preventive measures for other health issues with the Minister in this Chamber.

There is still a question mark over the future of HIV services, not only because of the cuts that we are seeing now, but because the future of public health budgets after 2018 is not guaranteed. There are also issues with the devolution to local authorities of business rates, which will be used to fund public health spending. The Government have still not published details of how they aim to ensure that public health will continue to be prioritised when that comes into effect. I hope that the Minister will be able to offer clarity today.

PrEP is a highly effective way of protecting someone who does not have HIV from contracting it. As the UK PROUD study showed, it was 86% effective in preventing HIV transmission and, if taken correctly, it has closer to a 100% success rate. That is why it is important that this drug treatment is supported as much as possible. While the announcement on the feasibility study is welcome, questions remain that the Minister must answer. Nearly four months since the trial was announced, we are still none the wiser as to when it will begin, other than that it will begin early in the 2017-18 financial year. I welcome that in her letter to the APPG yesterday the Minister said that the trial would begin in the summer, but I hope she will offer further clarity on when we will know more. There remains an issue with the drug Truvada, which is used in PrEP. For the trial to reach the 10,000 people that it plans to, a generic version of Truvada will need to be used. I am interested to know what conversations the Minister has had with Gilead, and how co-operative it has been to ensure the success of the trial.

Finally, I want to ask the Minister about the concerns that many PROUD participants will run out of their supply of PrEP this week, and that between 350 and 4,000 individuals at the highest risk of HIV will run out of supplies. That is a matter of urgency, and the Minister must address it as a matter of priority. We cannot allow the people who take this drug treatment to be put at risk. Therefore, I hope the Minister will go away today and look at the matter immediately.

These issues are highly important to many people who live with HIV or within those communities where infection rates are more common than in others, as we heard from my hon. Friends the Members for Hove and for Bristol West. I was shocked and surprised to hear that there is four times the normal rate of those people in the community of my hon. Friend the Member for Hove. I am well aware why he is here today to speak for his constituents.

The Government’s mismanaged approach to the NHS’s structures and to wider health services is seeing services fall through the gaps and people’s lives affected, which is exacerbated by short-sighted cuts. It is important that we recognise the work that has already gone into addressing HIV in our society, but accept that we still have a long way to go. We cannot squander these opportunities, as we could see yet another public health crisis due to complacency and failure to step up and address this issue. I hope the Minister has listened carefully to all the contributions to the debate and the seriousness of it, and will go away and do the right thing by the tens of thousands of people living with HIV or at those risk of contracting it, and support them. They should not be let down.

Rare Diseases Strategy

Sharon Hodgson Excerpts

Tuesday 28th March 2017 Westminster Hall

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship this afternoon, Mr Pritchard.

I welcome this important debate and I thank the hon. Member for Bath (Ben Howlett) for securing it and for his excellent introduction to it, although I am sorry that I missed the start of his speech because it started four minutes early before my hon. Friends and I were in our places.

I also thank other hon. Members for their contributions this afternoon, including the hon. Member for South Down (Ms Ritchie), my hon. Friend the Member for Cambridge (Daniel Zeichner) and the hon. Member for Linlithgow and East Falkirk (Martyn Day), the spokesman for the Scottish National party, who all made excellent and insightful speeches.

As others have said, here in the UK one in 17 people will be affected by a rare disease at some point in their life, which equates to approximately 3.5 million people in the UK. It cannot go unsaid that those 3.5 million people have a wide range of symptoms, which vary from condition to condition, some of which we have heard about this afternoon. It is clear that there are common experiences that people with these conditions all share. As Rare Disease UK has estimated that it takes on average four years for a patient to receive a diagnosis, it is clear that there are many missed opportunities to help those people living with rare diseases. Each and every person who suffers from a rare disease deserves the necessary support to live a fulfilling life.

That is why it was welcome that in 2013 the coalition Government published their UK-wide strategy for rare diseases, which was seen as heralding a new era in the treatment and care of rare disease patients across all four home nations. The 51 recommendations are all to be welcomed, as they each take us a step further in addressing concerns about the care and treatment of rare diseases, and the strategy’s aim is to make sure that no one gets left behind just because they have a rare disease. It is an aim that Labour welcomes wholeheartedly.

Most of my contribution to this debate will focus on the issues with the implementation of the strategy, but I will take a moment to mention some of the positives. It is welcome to see that the National Institute for Health Research has launched the Rare Diseases Translational Research Collaboration—I will use the acronym, RD-TRC, as it is much easier to say—which aims to empower patients to engage and become involved with research and research funding decisions. To date, the NIHR has invested £4 million in the RD-TRC, and the programme is expected to continue for another five years, with a £5 million investment.

Work has also been done by Public Health England on data recording, to bolster diagnosis and early intervention, and we have also seen Health Education England collaborate with the National School of Healthcare Science to produce two educational videos for healthcare professionals, in order to raise awareness of the problems faced by families who have a child with an undiagnosed condition and the importance of considering whether it is a rare disease. All this work is to be welcomed and should not go unnoticed.

Yet the sticking point in all of this, and the reason why we are here today to debate this issue, is that the Government are digging their heels in and not getting on with drafting an implementation plan, while the other home nations’ Health Departments are making significant strides. That betrays not only those patients living in England who wish this strategy to be properly implemented but the strategy itself, which stated that all four home nations must see the vision behind the strategy become a reality by 2020. It also undermines all the excellent work that I mentioned previously to implement the recommendations.

The strategy was published in 2013 and we are now just three years from the date set for the vision to be realised. However, the all-party group that the hon. Member for Bath so ably chairs has discovered that the Department of Health does not intend to publish an implementation plan, believing that it should be published by the NHS. Yet the NHS has said that it does not intend to do this either, as it does not have responsibility for other arm’s length bodies of the Department of Health. I want to ask the Minister why. I want to know why we are seeing patients and their families caught in this dispute between the NHS and the Department of Health. This situation cannot continue; there are people suffering right now who need this strategy to be implemented correctly.

I have briefly mentioned the report by the all-party group on rare, genetic and undiagnosed conditions on the lack of an implementation plan, but I know that it covers other issues as well, and I will take a moment to touch on some of them. One of the main issues raised was the lack of communication between organisations responsible for implementing the various aspects of the plan, and the failure to provide patients, families, doctors, industry experts and patient organisations with updates on progress of the strategy. That is deeply worrying, as it is important that people are made aware of the issues that affect them so personally. Therefore, it is not surprising that the all-party group heard from more than 300 patients that widespread disillusionment and disappointment had become the common feeling about the strategy, despite the optimism felt when it was published five years ago. The sting in the tail is that there are implementation plans for the strategy across the UK, with the exception of here in England. I share the frustration of the many others who are affected by the Government’s complacency. The Department’s rationale for not providing updates on progress is that patient organisations can disseminate information to patients and families, but it sadly fails to grasp that those organisations and charities are often very small and do not have the resources to pull together updates and send them out.

Also, issues that have not been worked on since the strategy was published have been identified, including prevention and identification of rare diseases, improving care pathways and failing to implement structures that would facilitate collaboration between the four home nations. In his response, I would be grateful if the Minister could provide us with an update on those points and tell us what his Department plans to do to see the recommendations through.

The strategy is now five years old, and although there has been work to see it realised, it has not gone far enough. The failure here is that the Department of Health in England is not fulfilling its duty to draft an implementation plan to realise the visionary goals in the strategy, which undermines the work already under way and hinders any future work. The Minister must set that right, and I hope he plans to do so today. He has the power to rectify the situation and he cannot be complacent when it comes to supporting people living with rare diseases.

We are not talking about a handful of people; many of our own constituents are being failed by the Government, and all they ask for is that the Department of Health do what Departments in the other home nations are doing and provide an implementation plan to enable the strategy to be fully realised and make the impact it was intended to have. I once more thank the hon. Member for Bath. I hope that the debate will make the Minister think again about the Government’s opposition to taking responsibility for a plan, and that he will honour the whole vision of the strategy, instead of cherry-picking from it.

[Mark Pritchard (in the Chair)]

If the Minister does not use all the time allocated—10 minutes is a guide, but clearly there is more time on the clock—it will allow me to call the hon. Member for Bath for a brief winding up, but that is entirely in the Minister’s gift.

Draft Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) (amendment) Regulations 2017

Sharon Hodgson Excerpts

Monday 27th March 2017 General Committees

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Alan. The Opposition are pleased that the Government have finally brought these regulations before us, especially with the end-date for the mandation of health visitor reviews being so close—it will be in five days’ time, to be exact. I welcome a lot of what the Minister said.

The regulations are welcome as they continue the mandation of health visitor reviews, which are an important part of an early intervention strategy. We will therefore not seek to divide the Committee. However, I have concerns about health visiting and what the regulations will do that I wish to raise with the Minister and on which I seek reassurance.

This year marks 155 years since the start of health visiting, which has had a range of different guises over the years, in 1862. It is important that we protect this long and proud career and give it the support it deserves. It is therefore concerning to see in the provision relating to regulation 5B of the principal regulations a potential watering down of who can do universal health visitor reviews, allowing other qualified health professionals to conduct reviews instead of health visitors. That is concerning when there is anecdotal evidence that health visitors are being told to delegate to other professionals, but are doing so only because they are so overstretched and busy with their huge workloads. That does not mean other health professionals cannot be complementary to the reviews, but the core reviews must be done by health visitors, because they are the specialists and it is their job to do it after being trained to undertake that role.

A health visitor’s role should not be diminished. I hope the Minister agrees and will assure me that she will closely monitor that issue, as I certainly will, to ensure that health visiting is not a diminished profession and that we do not see a reduction in the quality of health visitor reviews. I look forward to her response.