Hormone Pregnancy Tests

Hannah Bardell Excerpts

Tuesday 23rd April 2019 Westminster Hall

[Sir Mike Penning (Hemel Hempstead) (Con)]

It is a pleasure to be involved in this debate, to be part of one of the largest all-party parliamentary groups in the House, and to look after my constituents and speak for them and the others who have been so dramatically affected. They trusted the NHS and the drug company and so thought that the drug they were taking was safe. As was suggested, these ladies went to their GP surgery perhaps because they had missed their period or had some of the other symptoms of pregnancy. It was such an important time in their lives. Often the GP just opened a drawer, gave them the tablets and said, “This will tell you whether you are pregnant or not.” There were no pamphlets and no advice, even though the risks were known to nearly everyone, apart from those ladies who took those tablets.

In this excellent debate, we have touched on a lot of the science. I am not a scientist or a lawyer; I am just a dad who is trying to help out some constituents in this area and as part of the group. In the debate that followed the publication of this so-called independent review, I said that it was a whitewash, but it was not; it was a cover-up, and we have to discover what is being covered up. Is it the legal side of the NHS giving a drug to a woman on its premises when it knew there was not only a risk, but an effect? Is it the drug company having undue influence on the report, the Medicines and Healthcare products Regulatory Agency, the Department of Health and Social Care, or a bit of everything?

I say to the Minister that this is not about this Government, but Governments. The issue was being discussed when I was the shadow public health Minister, not least by thalidomide campaigners. They were supportive of this campaign, and they had to rely extensively on evidence that was there, but that the Government and the drug companies had ignored over the years.

[Hannah Bardell (Livingston) (SNP)]

Is it not the case that we do not need to be lawyers or medical experts to realise that a drug that is 40 times the strength of the contraceptive pill—it was being given in such countries as Germany as an abortive—would surely have profound impacts on unborn foetuses, or children who were born after their mothers had taken Primodos?

[Sir Mike Penning]

No one in this room or anyone listening to this debate could disagree with that, unless they were a lawyer working for the drug company, the Department of Health and Social Care, or perhaps both.

Believe it or not, Mr Hollobone, 70% of me, you and anyone else in the room is the same as a zebrafish. I swim really well, but I did not realise that until this morning. We chuckle, but the point is that the effects of an experiment on zebrafish will be similar to those on a human being. There are many studies, but the link is important. Professor Neil Vargesson’s report in 2018 supported Professor Heneghan’s report. What does that mean? We all know about the disgrace of thalidomide. Through experimentation on zebrafish, it was proven that thalidomide damaged children. We do not want to experiment on humans. It appears that that is exactly what has gone on here. It is obvious that the mechanism of the action of thalidomide is the same as that shown by the Primodos tests. Everybody can read the technical stuff. There was an effect on zebrafish, who share 70% of their genes with humans. Does that mean it could have had an effect on humans? Of course it does; it is not rocket science.

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[Hannah Bardell (Livingston) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I give huge credit to Marie Lyon and all the campaigners from the Primodos group; I have got to know them very well in the four years since I was elected in 2015. I have rarely met a more tireless and dedicated group. The same goes for the hon. Member for Bolton South East (Yasmin Qureshi). She, with her staff, has run the all-party parliamentary group with incredible veracity and determination, and it is a pleasure to be part of that. I also give credit to Jason Farrell of Sky, who recently did a documentary on the impacts of Primodos, shining a light where no one else, frankly, has gone.

I have campaigned for my constituent Wilma Ord and her daughter Kirsteen, who was born deaf and with cerebral palsy. Like so many women, as many Members have mentioned, Wilma believed that the deformities that her child was born with were her own fault. Let us call it out for what it is. As the right hon. Member for Kingston and Surbiton (Sir Edward Davey) said, there was a criminal cover-up. Some 1.5 million women were treated as human guinea pigs for the pursuit of profit by the company Schering, now Bayer. I hope that it is listening today.

I know that the Minister and the Government are listening. There is clearly consensus, the likes of which few of us will have seen, across the House on this issue. We are not going away, the campaigners are not going away, and this issue is not going away. Until I am no longer the elected Member of Parliament for Livingston, I will campaign on this issue and pursue it, as I know everybody in the Chamber will.

[Jonathan Reynolds (Stalybridge and Hyde) (Lab/Co-op)]

I, too, am pleased that this debate is happening, but I am really sad and frustrated to be here. I have re-read my speech from our October 2016 debate, at which I think all hon. Members in this Chamber were present. I spoke about two constituents who had been affected.

Most of the speeches in that debate articulately raised such cases, but basically they were asking for a process to find answers. Three years later, we have fewer answers and most of us are more suspicious and angry. On that basis alone, this cannot be the end of the matter. I thoroughly agree with the hon. Lady’s comments.

[Hannah Bardell]

I absolutely agree. I share the hon. Gentleman’s despair and sadness that we are in this position so many years after the group was set up—a process into which the Government put public money and in which medical experts took part. As I have said, we are not necessarily criticising the people in the expert working group, who are medical professionals, but they have fallen victim to a process that was at best opaque and at worst corrupt, given the influence of the companies involved.

Who knows why we ended up in this mess? On the day the report was due to be published, the hon. Member for Bolton South East and I went to an event that we thought was supposed to be public—or at least open to Members of Parliament. We were stopped at the door; some of the press were allowed in, but we were not. We know that there was due to be a press conference and a public event, but they were both cancelled.

Members have spoken passionately about the lack of independence and impartiality, the gagging clause that Marie Lyon had to sign and the heavy-handed approach taken, all of which have caused serious concerns. What does it say to those in the medical community who may be invited to be part of future Government working groups that a group that was supposed to be open and transparent and get to the truth of an issue has turned out to be a cover-up? It raises serious concerns that their credibility will be called into question. That is a very dangerous situation.

As well as looking at the wider issue, we need to look at the mess that the expert group became, so that we can give confidence not only to the families and to our constituents, but to medical professionals.

[Gordon Marsden]

The hon. Lady points out precisely the contextual things that we need to learn. Does she agree that there seems to have been an element of Jekyll and Hyde in the Government’s approach over the past three years? On the positive side, I have confidence that Baroness Cumberlege—with whom I have served on another all-party group—and her team are moving in the right direction. However, everything in the statement that the then Secretary of State made in February 2018 was about the future:

“drive forward…the recommendations of the expert working group…offering the families…a full and up-to-date genetic clinical evaluation…better training and support for obstetricians”.—[Official Report, 21 February 2018; Vol. 636, c. 165-166.]

Those are all good things, but they do not address the past 40 years, offer an apology or express any sense of regret, nor do they address any of the issues raised in this debate. Would it not be a good idea for the Minister to go back to the Secretary of State and say that we need to look again at that 2018 statement, go back to that context and make the necessary decisions? People will not put up with just a broad range of recommendations —we need to get to the heart of the matter.

[Hannah Bardell]

The hon. Gentleman is absolutely correct. How many times must the families and the victims of Primodos have their hopes built up and then completely dashed? Is it not bad enough that they have gone through the trauma, the blame and having their children live with deformities and disabilities—as my hon. Friend the Member for Argyll and Bute (Brendan O’Hara) so precisely and devastatingly highlighted in the case of his constituent—without also having their hopes built up for a review that turns out to be a whitewash? That gives people no confidence at a time when, let’s be honest, confidence in politicians and the political process is not particularly good. We have an opportunity here to do something good, to do it well and to do it properly.

I have to say that my exchanges with the Medicines and Healthcare Products Regulatory Agency and with the expert working group have not been good. I wrote directly to the chair of the expert working group about people’s feelings and concerns, but the response that I received did not fill me with hope.

I am pleased that Baroness Cumberlege has taken on her new role of looking at hormone pregnancy tests, sodium valproate and medical mesh, but when she sought evidence, she did not include Scotland. I have now written to her, and that issue has been rectified, but it is important to remember all the devolved nations of the UK and ensure that they are appropriately included. We know what the academic studies have shown—the work of Carl Heneghan and Neil Vargesson has been exceptional—but there is now new evidence and we should ensure that it is included in any future plans or reviews.

What we need from the Minister is an acknowledgment of the power of the views across this Chamber and across both Houses, and of the serious impact of this issue on people’s lives. How many parents need to die without knowing what happened to their children because of a pill that they took? As the right hon. Member for Hemel Hempstead (Sir Mike Penning) said, these were women who believed that they were in the care of the NHS, that they were being given something that had been properly medically checked, and that they were not being put in danger. However, their health and the health of their unborn children were put in danger. Let us not forget that many women miscarried—there are many children who were not born because their mothers took this pill. This drug was used in Germany as an abortive and in another country as a pregnancy test. It does not take an expert to work out that that was absolutely wrong.

We have a choice, and we have an opportunity. There is a very powerful body of medical evidence that needs to be properly looked at. The Government also need to take a long, hard look in the mirror and think very carefully about why the expert working group failed so badly and why its terms of reference changed part of the way through. They need to make sure that that never happens again; that the victims of Primodos, including my constituent and all the constituents mentioned today, never have to go through any more pain and suffering; and that those victims will get truth, justice and answers to their questions. Do they need compensation? Yes, absolutely, but what they really want is an apology and an acknowledgment.

As the right hon. Member for Hemel Hempstead said, when something goes wrong, the right thing to do is put your hands up and say, “Do you know what? We got this wrong.” It is about time that that happened. I hope that now the Minister and her Government will finally do the right thing.

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[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

I thank all hon. Members who have participated in the debate, with real passion and determination to get to the truth. I fully accept the perception held by all Members present that we have waited a long time for answers.

One of the reasons I have pushed so hard for the Cumberlege review is exactly those arguments that have been made here this morning. It is important that everybody who has been affected is able to get answers. We have heard lots of talk today about a cover-up, and there clearly needs to be confidence in the review’s outcome. That is why I wanted Baroness Cumberlege to take an objective look at exactly what has happened, as well as recognising that the way in which the regulatory system has dealt with concerns has seemed very inhumane, process-driven and extremely insensitive to patients. The response on issues of patient safety must be improved. I am really looking forward to receiving Baroness Cumberlege’s recommendation in that regard, because so many people’s experiences have been entirely unsatisfactory. I know that she has considered the evidence brought to her by Marie Lyon and Jason Farrell. I will be taking the recommendations extremely seriously and I hope that she can draw some conclusions on where everything has gone wrong.

The hon. Member for Bolton South East (Yasmin Qureshi) and others raised the issue of the independence of the Medicines and Healthcare Products Regulatory Agency. It is entirely appropriate that regulators are funded by the community that they regulate, through fees. That in itself does not lead to questions on the regulator’s independence, but we need to offer some challenge in order to see whether the processes have sufficient integrity in terms of the response on issues of patient safety. I do not think we tackle the question of independence solely by shifting the funding on to taxpayers. It is entirely appropriate that the industry should meet the cost of regulation, but the review will bring some conclusions on whether that medical regulation is operating properly.

While we await the review’s conclusions, we have had the expert working group. It is clear that hon. Members are not entirely confident in the processes and conclusions of that group. To put the work in context, the group gathered evidence from around the world and met seven times over an 18-month period. It concluded unanimously that the totality of the data reviewed did not support a causal association between Primodos and adverse pregnancy outcomes. It also did not conclude that there was not, and we clearly need to consider any further evidence when it is brought forward.

[Hannah Bardell]

I appreciate the comments that the Minister is making. She must recognise that the MHRA had ultimate control over what the expert working group saw, and that many documents that Sky’s Jason Farrell had uncovered in Berlin and which Members have cited were not included in the work of the EWG. We need a fully transparent review—as the right hon. Member for Hemel Hempstead (Sir Mike Penning) said—under oath. Does she agree that that would be sensible?

[Jackie Doyle-Price]

I come back to my opening comments: we brought forward the Cumberlege review to give an independent challenge to what is currently being done by a regulatory system. We need to look at whether that system is appropriate, given the concerns.

Cervical Cancer Smear Tests

Hannah Bardell Excerpts

Monday 28th January 2019 Westminster Hall

[Hannah Bardell (Livingston) (SNP)]

It is a pleasure to serve under your chairmanship, Sir Roger, and to speak in this debate. I was supposed to be with you and others at the Council of Europe last week, but I was not there; I was having a biopsy done, because I had had an irregular smear. It was an uncomfortable and painful experience, but it was largely made better by the fantastic doctors at St John’s Hospital in Livingston. I will get the results in three to four weeks—hopefully they will be all-clear.

It is very important that those of us who have a voice use it to speak out and encourage young women and people in the trans community to have their smear tests. I had a really fantastic conversation last summer with people from Jo’s Trust, who spoke passionately about the work they are doing with members of the trans community.

I want to pay tribute to some of the organisations that work in the area, including a charity in my constituency called the Michelle Henderson Cervical Cancer Trust. Michelle Henderson was in the year below me in high school; I did not know her well, but we occasionally attended the same house parties and I knew her to be an incredibly bright and vivacious young woman. In October 2010, at age 26, she was diagnosed with cervical cancer. She died on her 28th birthday in October 2012. Her father is the famous football player Willie Henderson. Michelle set up the charity not long after she was diagnosed, and Willie has continued her incredible work in her memory. A couple of years ago I did the 120 km last leg of the Camino de Santiago to raise money for that incredible charity.

Too many women are dying young. Many of us feel that we must listen to the health professionals; we absolutely must, but we must also consider the individual cases of those who, like me, had irregularities picked up early on, well below the age at which cervical smears are now being carried out in Scotland, England and the rest of the UK.

The hon. Members for Rotherham (Sarah Champion) and for Warrington North (Helen Jones) mentioned victims of sexual violence. I want to pay tribute to the work of My Body Back, a project set up in August 2014 by Pavan Amara that supports women who have experienced rape or sexual assault to take their bodies back again. It runs specialist services and recently opened a clinic in Glasgow that includes a cervical screening and maternity clinic. That work is so vital, because for women who have been victims of sexual violence it can be a harrowing experience to have to go and have a smear done. The fact that the design of speculums has not developed or changed in decades, if not longer, says something about the care that is given to women’s health.

I was diagnosed with HPV—for the rest of the world, let us remember that that presents itself as genital warts—in my late teens. I had intercourse with a man—I was not out at that point—and the condom broke. He was good enough to get in touch to tell me that he had contracted HPV, not from me but from a previous partner. That was an experience that I have lived with ever since. It has been a source of deep shame, because it means that no medical professional has ever been able to tell me whether my irregular smears—I have had many over the years, and much treatment for pre-cancerous cells—were directly related to that experience.

The positive part of the story is that a few years after my experience, and after I was given the all-clear, I was contacted by a big health conglomerate that was developing a vaccine to stop HPV and asked me to give my cells. I was happy to do that, so I spent a couple of years travelling back and forth to clinics, giving my cells and blood. My unfortunate experience—the experience of many women the length and breadth of the country, and not something we should be ashamed of—led to my cells being used to develop the vaccine that is now given to many women and young girls across the country. That is something I am very proud of.

I had not planned to speak about my personal experiences today, but I figure that those of us who have a voice should use it. Cervical smears are at an all-time low. There may be an element of complacency because we are wiping cervical cancer out, but—as my doctor reminded me the other day as she was peering over me while doing my colposcopy—the vaccine protects against only three strains of HPV, which, like all viruses, has a habit of mutating. We must say to every person who should be getting their cervical smear how vital it is, and we must listen to them about their real and genuine concerns.

As the hon. Member for Warrington North said, the terrible shaming of women’s bodies in the media plays a key part in why women and girls feel that they cannot come forward. We must remind them that our bodies come in all shapes and sizes, and they are all beautiful. The only way to prevent this terrible disease from killing more women is to make sure that we get out there, talk about it and encourage them to go for their cervical smears.

[Jenny Chapman (Darlington) (Lab)]

It is a pleasure to speak in this debate, particularly under your chairmanship, Sir Roger. It is great to be in a Parliament in which women are prepared to stand up and share some of the most private, intimate things about their lives—probably things they have not told their mothers—in a forum such as this.

[Hannah Bardell]

I just want to say that, when I went to the sexual health clinic in Edinburgh, my mother came with me. She was the only person I trusted—and, yes, until today there were only a handful of people in my life who knew that story.

[Jenny Chapman]

She sounds fantastic—how lucky you are.

We are now in an age in which women can stand up in Parliament, as I do not think they could even as recently as 2010, when I was first elected, and talk about the cost of Tampax, smear tests, their sexual history—

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[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Roger. I thank everybody who signed the petition and all the women who have come to listen to the debate. I know that getting down to London can be quite tricky—I say that because I come from Hull—so I thank them all for coming.

I agree that having a smear test is not pleasant, but I think that we would all agree that it is crucial. While we are in a sharing mood, I will share a little bit with you all as well. I too had abnormal smear tests and was found to have pre-cancerous cells when I was in my early 20s. I had just finished university and decided to move to Leeds to spend time with my sister. It was fine, because I had the biopsy and—they had to remove the cells—went through the various bits and pieces of the operation. Since then I have been on a yearly recall, so I have had so many smear tests. Every time I ask whether I still need to be on a yearly recall, they say, “We’ll let you know,” and then the following year I have to go back. I am due to go back again, so this debate has prompted me to pick up the phone and arrange that.

I did not take my mum with me to that procedure, because unfortunately she was unable to come, so I took my sister, who is five years younger than me —I was only about 21 or 22. The experience of coming in to watch terrified her; she was there to offer me moral support, but I found myself reassuring her throughout my operation, saying. “Don’t worry; it’s fine. I’m perfectly okay.” I think that we should be a bit more open and honest about these things.

We should also do the brilliant thing that we all do when we get a little embarrassed: laugh about it, because it can actually be quite comical. As I said, I have had so many smear tests, and when my friends are worried about them, I joke about the ridiculous, small piece of blue towel that is meant to preserve our modesty. The midriff is hidden by the piece of blue towel while all the rest is exposed to the world—that is funny. It was also quite funny when, not long after being elected, I was lying there and someone asked, “Are you our local MP?” I said, “Oh, yes. I am.” We then proceeded to have a conversation about how I was finding life at Westminster. I said, “Well, slightly more comfortable than this, thank you very much!” We should find those things funny and we should laugh.

While I am in the sharing mood, I have a little tip for all the women out there. If, like me, they suffer from a hidden cervix—apparently mine is quite shy—a towel or cushion under the bottom lifts it up so it comes into view. That is a little bit of health advice while I am here.

In all seriousness, there is a growing problem. In Hull, the figure for women having smear tests has dropped to only 73.1%—that is a huge fall. The figure is slightly higher in East Riding, at around 78%, but that is nowhere near the 80% for which the NHS is aiming. I echo the words of all hon. Friends and hon. Members who have spoken when I say that the Government need to conduct some kind of survey to find out why. Is the problem, as my hon. Friend the Member for Warrington North (Helen Jones) said, that women associate smear tests with sexual activity? Do they think that they have no need for one? Do their working hours mean that they are not able to attend tests? Let us find out and make life that bit easier for all of them.

We know, when looking at the NHS cure rates, that 92% of those whose cancer was detected are cured. That is wonderful. I cannot possibly say what would have happened to me had mine not been removed—I do not know. I am here today, all is well, and I will book my next smear test. Some 66% of all those diagnosed after developing symptoms are also cured. We need to do more to push that message out to people and get rid of the myths. I absolutely support what my hon. Friend the Member for City of Chester (Christian Matheson) said in his beautiful speech about the importance of reducing the age to 18 under a doctor’s advice.

I have been involved in a campaign for teaching menstrual wellbeing in schools, on the education side of the issue, because I am not sure that everybody understands what the abnormal signs or symptoms are. I became involved in the campaign through my support for the charity Endometriosis UK, but I think that removing the taboo around periods, smear tests and so on would also help a lot of people. We must start talking in schools about menstrual wellbeing, what normal and abnormal periods are, and what normal and abnormal symptoms are. If we start to have that conversation, we will give people the language and ability to talk about the matter without feeling really shy and saying, “I’ve got a problem with my—I can’t say the word.”

We should be able to talk about it, which reminds me of a brilliant story. When I was doing a radio show for my campaign on vaginal mesh, I spoke to the show’s producer before I was due to speak live. He said, “We’re very supportive of the campaign, but it’s a breakfast show, Emma, so could you not say the word ‘vagina’?” I therefore spent the entire interview talking about problems with “mesh” that was “in” women’s bodies. We need to dispel all of that nonsense and shyness and start being a little more open, and I implore the Minister to work with the Schools Minister in support of my call for menstrual wellbeing to be taught in schools.

[Hannah Bardell]

I absolutely agree with the hon. Lady about how, for some reason, we cannot talk about parts of our bodies at that time in the morning. In the same way, I still find it incredible that adverts for sanitary products depict women’s period blood as being blue rather than red. I do not know about anyone else, but I have never bled blue in my life.

[Emma Hardy]

Perhaps that is the royal family only. The hon. Lady is absolutely right. For years I was convinced that if we used Tampax, it would suddenly make us fitter, more active and able to roller-skate—[Laughter.] Sorry, we are descending into farce.

On a serious note, I ask the Minister, please, to look at what my hon. Friend the Member for Warrington North said about lowering the age to 18 when doctors give a recommendation. I also ask him to support my call for menstrual wellbeing to be taught in schools, and to have a wider survey into understanding why people are not attending tests, so that we can do something to change that for the future.

Oral Answers to Questions

Hannah Bardell Excerpts

Tuesday 27th November 2018 Commons Chamber

[Caroline Dinenage]

To mark the fact that it will be 10 years since the Autism Act was passed, we will start a formal review of that piece of legislation and the autism strategy, to ensure that they remain fit for purpose and heading in the right direction.[Official Report, 29 November 2018, Vol. 650, c. 4MC.]

[Hannah Bardell (Livingston) (SNP)]

My constituents Kirsteen and Wilma Ord have had their lives blighted by the Primodos hormone pregnancy drug. The review that the Government undertook was a whitewash, and now the further review, led by Baroness Cumberlege, will focus only on people in England. She has said that she will consult groups in Scotland, but drug regulation is reserved. What will the Minister do to promise that my constituents will not be let down again?

[Jackie Doyle-Price]

I met Baroness Cumberlege just last week, and I know she would be open to hearing representations from constituents in Scotland, to add to her understanding of this issue. We are determined to make full use of that review, so that we can learn lessons from this tragedy.

Autism and Learning Disability Training: Healthcare Professionals

Hannah Bardell Excerpts

Monday 22nd October 2018 Westminster Hall

[Daniel Zeichner]

The hon. Lady makes a fair point. Training needs to be provided to all staff, but absolutely, those who are not exposed to such people are a particular issue.

My comments so far have been decidedly non-partisan, and I hope Members from across the House are able to support most of what I have suggested. However, before concluding, I must make some observations about the staffing pressures that affect our public services—particularly changes to student nursing bursaries.

We have heard in the House many times that the current financial settlement for student nurses is insufficient given the intensity of their courses. I and many others believe that nursing students need bespoke financial support if the Government are to meet their commitment to growing the nursing workforce. Those students need support for living costs to incentivise a wider range of applications. There are many ways that can be done—through universal grants for students in recognition of their placements, means-tested grants to maintain diversity or targeted support for parents and carers, as many nursing students come to university later in life.

Since the coalition Government came to power in 2010, specialist areas such as learning disability and mental health nursing have been the worst hit by the wider staffing crisis. Those specialties struggle to recruit, since mature students are particularly likely to choose them. The Royal College of Nursing reports that there are 40.5% fewer learning disability nurses—2,176 fewer full-time equivalent nurses—today than in 2010. Despite Government claims, the removal of the NHS bursary in England failed to increase the number of nursing students. Recent data shows that the number of students accepted on to nursing courses in England has fallen by a further 4% in the past year, and by 8% since student funding was removed in 2016.

Intelligence from RCN regional networks indicates that directors of nursing across England are escalating concerns about course provision. They are concerned about the stark regional variation in course provision for learning disability nursing—particularly the risk of course closures in the south of England—which may exacerbate existing regional workforce supply disparities. The huge workforce pressure risks poorer care for learning disabled people. A commitment from the Government to encourage students into learning disability nursing may improve standards of care and patient safety.

[Hannah Bardell (Livingston) (SNP)]

The hon. Gentleman is making an excellent speech. Does he agree that, while Brexit dominates much of our time in Parliament, we must we also have the opportunity to debate and get into the granular detail of important issues such as the one he highlights?

[Daniel Zeichner]

I am grateful to the hon. Lady for making that point. We could probably find favour across the House and across the country for moving on from some issues at the moment, but she is absolutely right—such issues are very pressing and probably of huge importance to most people, especially when failure to address them leads to the kind of tragedy we have heard about.

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[Tulip Siddiq]

I absolutely agree with my hon. Friend that the issue is not confined to the healthcare services. It crosses borders, and she made an effective point about the police and others dealing with the challenges of autism that arise in everyday life.

[Hannah Bardell]

On a similar point, does the hon. Lady agree that staff in the Department for Work and Pensions should also be trained? Some of my constituents have not have positive experiences of the welfare system. I know that the staff have a difficult job, but often people are marginalised because of a lack of understanding.

[Tulip Siddiq]

Similar things come up in my surgeries. People come in and complain bitterly about the way they have been treated, simply because they have not been understood by service providers, whether at the Department for Work and Pensions when they needed social security, or elsewhere.

I would like the Minister to address how she will ensure that those with learning disabilities and their families will be treated as equal partners in setting targets for success and in deciding whether change is happening in the right way. How does she anticipate that all healthcare professionals, and not just a few, will get good quality learning disability training, and how will the challenge of resourcing that be met? We have heard Mencap’s estimate that 1,200 people with learning disabilities die every year because of an avoidable lack of access to good healthcare: it was pointed out earlier in the debate that it seems more deaths are of young people, which is shocking. I hope that the Minister will address that situation, which is simply horrifying. I hope that, in addition to answering my specific questions, she will explain how her Department is accelerating its efforts to reduce that figure dramatically in the coming months and years.

I pay tribute once again to Paula McGowan and those seated in the Public Gallery today, because I know it has been a difficult campaign so far.

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[Mike Wood]

The hon. Lady is right, and if I may give a quick plug, the all-party parliamentary group has done some important work with the National Autistic Society on precisely the issue of autism, employment and education. I understand it will be published shortly and I hope it provides a focus for a future debate.

[Hannah Bardell]

Following on from that point, does the hon. Gentleman agree that people with autism and additional support needs have a huge contribution to make to our economy and society? As someone who has had a number of people on work experience, they have helped me to see the world in a different way. I am sure the hon. Gentleman will have seen “The Curious Incident of the Dog in the Night-Time”; when I went to see that in the west end, it was a turning point for me in understanding the world and a little window into how people with autism see it.

[Mike Wood]

The hon. Lady is absolutely right. That enormous employment gap is a tragedy in terms of not only the lost opportunities for those people directly affected, but the wasted opportunities for the many employers who could be benefiting from the skills of people with autism and other learning disabilities, and for wider society, which is losing the contributions that they can make.

Finally, I will touch quickly on the issue of mental health. Autism is not a mental illness, but we know that people with autism are much more likely to be affected by many mental illnesses, particularly anxiety-related illnesses, than the general population. We need to ensure that the new framework is properly embedded across mental healthcare as well as physical healthcare, so that our mental health services can ensure that people with autism get the proper services they need. Far too often, people with autism find not only that their condition means their mental health problems are not properly diagnosed at an early stage, but that, if diagnosed, their condition can interfere with their receiving the appropriate treatment in a way that might be expected elsewhere.

We must ensure that autism is one of the four clinical priorities right across the healthcare system and that the training our healthcare professionals receive reflects that. Only then can we start to address the healthcare inequalities that we see in this country and, hopefully, try to ensure that there are fewer repeats of the terrible stories we have heard this afternoon.

--- Later in debate ---

[Hannah Bardell (Livingston) (SNP)]

It is a huge pleasure to serve under your chairship, Dame Cheryl. I know that other hon. Members have said this, but the work that you have done in this area, and the work of others in this Parliament, is hugely important, and its importance has never been more obvious than today. I have no direct experience other than the constituency cases that I mentioned earlier, but the level of emotion and empathy in the Chamber today is raw. As chair of the all-party parliamentary group on deaths abroad and consular services and assistance, I have recently taken evidence from families who have lost loved ones abroad, albeit in different circumstances. Hearing about the circumstances of Oliver’s death, and knowing that his mother and his family are here to listen to the debate, only highlights the importance of doing something and doing it well. There can be no greater endeavour for a parliamentarian than to right a wrong by taking an experience that has been devastating or traumatic, or resulted in someone’s needless death, and trying to turn that experience into a positive—into change that will mean that others do not suffer in the same way.

The hon. Member for Cambridge (Daniel Zeichner) opened the debate with an excellent contribution. He took us through the details, of Oliver’s death, as the hon. Member for Kingswood (Chris Skidmore) did, and I have to say that although I had read some of the details, I was not aware of just how devastating and difficult what happened was, how complex Oliver’s needs were and how badly he and his family were let down.

We must be very careful, because we live in a blame culture. We live in a culture in which, when things go wrong, the finger is pointed. We all know that NHS staff, in whatever part of the UK, do their very best, but there have been failings and the lessons must be learned. Oliver’s death cannot be in vain. I therefore hope that the Minister will detail what she plans to do and give Oliver’s family and us all a sense that there will be change. I have no doubt that the UK Government are very much behind the wish to change the system.

The hon. Member for Hampstead and Kilburn (Tulip Siddiq) talked about the work being done in her constituency through the Treat Me Right programme and the impact that that has had in north-west London. I want to mention briefly the Beatlie campus in my constituency of Livingston. The Beatlie School sits at the back of my mum’s fence, and the building in which it is housed was my old primary school. When it shut, that was a great trauma for the local community, but it fills me with great pride that it is now a school that supports children with additional support needs: autism and a range of issues. Recently, it was awarded a Gold: Rights Respecting award by UNICEF. Its headteacher, Carol Robbie, and her staff do an incredible job, so I want to pay tribute to them.

The hon. Member for Dudley South (Mike Wood) spoke about his experience of being a governor of a school that supports children with additional support needs. Many of the speakers today, including my hon. Friend the Member for Central Ayrshire (Dr Whitford), have talked about the need for a tailored but collaborative approach. That is particularly important. In Scotland, we have championed partnership working in many of our local authorities, and we have particularly done so in West Lothian.

The point has been made that it is not just healthcare workers who should be trained but people who will be coming into contact with those with additional support needs, including in relation to autism. That is incredibly important. Whatever area we are talking about, whether it is housing, welfare or whatever, staff need to have proper and appropriate training, as do businesses. The debate has been very much opened up, and we must look at the improvements that need to happen across the board, not just for NHS staff.

The Scottish strategy for autism was published jointly with the Convention of Scottish Local Authorities in 2011, and our Government in Scotland committed £13.4 million over four years to improve the lives of autistic people and their families and carers. A review was published in 2014, and I will just share some of the findings. There was the development of a menu of interventions, which meant a guide to help autistic people and their families and carers to identify available advice and support, and a mapping exercise, which sought to map out and better co-ordinate local services. That coincided with £35,000 for each of our 32 local authorities to encourage local and national organisations to develop projects to improve the delivery of local autism services. In my constituency, a number of organisations have benefited from that.

[Ian Austin in the Chair]

In 2015, the strategy was refreshed and reframed into an outcomes approach, and it has had a significant impact on each local authority in Scotland and their services. We are not perfect, but we have done a significant amount and we are absolutely dedicated to ensuring that whatever an individual’s needs are, they are properly catered for.

I pay tribute to the hon. Member for Sheffield, Hallam (Jared O'Mara). It is hard to know how to respond to his speech, because it was so powerful and so necessary. He spoke not only about autism and his needs, but the way that this place is structured. We have said it many times—I will never forget that feeling of anxiety the first time I sat in Prime Minister’s questions. It was so alien. I witnessed such boorish and unbelievable behaviour—I have never seen anything like it in my life. It is not a natural environment for anybody. It fills me with great sadness that we have not been able to move on and that he still feels that he cannot attend Prime Minister’s questions. I am glad that some reasonable adjustments have been made. The brave and direct way that he spoke about his experiences will be shared, and I give him my commitment that I will share it on social media and beyond, because I think it is incredibly important. If we are going to be truly diverse in this Parliament and make better decisions for the people across these islands, it is vital that we have Members with different needs, abilities and perspectives, and the hon. Gentleman has epitomised that.

I cannot imagine what Oliver’s family’s experience has been like. What Paula and her family have done takes incredible bravery. I wish them well with their campaign, which we will carry in our hearts. I hope we will all play our part, and that the Minister will give Oliver’s family positive words and actions, to ensure that nobody ever again goes through the experience that he and his family did.

Oral Answers to Questions

Hannah Bardell Excerpts

Tuesday 19th June 2018 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)]

Survival rates are high, but I am ambitious for more. That is why the Prime Minister recently announced £75 million to support new research into the early diagnosis and treatment of prostate cancer. We will recruit 40,000 patients into more than 60 studies over the next five years, and further to this even more exciting is the rapid pathway that I was discussing yesterday with Cally Palmer, our national cancer director, which we are trialling across three hospital sites in west London as part of its local cancer alliance.

[Hannah Bardell (Livingston) (SNP)]

T2. Given the challenges the Secretary of State and his Government face in recruiting and retaining health and social care staff, will he follow the example of the Scottish Government, who pay their social care assistants and care assistants the real living wage, meaning they earn £1,100 a year more than their counterparts in England?

[Mr Hunt]

May I gently remind the hon. Lady that it was this Conservative Government who introduced the national living wage, and we did that on the basis of transforming the economy, championing policies that were by and large opposed every step of the way by the Scottish National party?

Energy Drink Sales to Children

Hannah Bardell Excerpts

Tuesday 17th April 2018 Westminster Hall

[Steve Brine]

That is an emerging policy area that I am taking very close interest in, as the Public Health Minister and someone with an interest in the public health and child obesity agendas. In the same way that the major retailers that I put on the record have shown what I suggest is a great deal of corporate responsibility, I suggest that the producers of these drinks might also take a long, hard look and consider their social and moral responsibility, so that they can stay within the spirit of the guidelines.

[Hannah Bardell (Livingston) (SNP)]

In the spirit of co-operation, because there was a mention of the Scottish Government’s study, what engagement has the Minister had with Public Health Ministers in the devolved nations? Does he agree that sharing ideas, approaches and policies across the UK and beyond will be the best way to tackle this issue?

[Steve Brine]

I completely agree. Personally, I have not had that engagement, but I will check with my officials and I will be surprised if they have not. If the hon. Lady wishes to facilitate that engagement, I would be very happy.

I want to touch briefly on sugar. Many energy drinks contain high levels of sugar. Studies conducted in children and adolescents indicate that higher consumption of sugars, including the sugar-sweetened drinks that we are talking about, is also associated with a greater risk of tooth decay, weight gain and all the other health impacts—look at the challenges that we have in the health service with type 2 diabetes. Latest figures continue to show that our childhood obesity rates remain far too high. Almost a quarter of children are overweight or obese when they start primary school in England, rising to around a third by the time they leave. That is not good enough and the Government and I are far from happy about it. Intakes of sugar are currently more than double the recommended amount across all age groups. Teenagers are consuming just over 14% of their energy from sugar, and over a fifth of this sugar intake comes from sugar-sweetened soft drinks.

Key measures in what I think was a well received, world-leading childhood obesity plan, launched in August 2016, include the soft drinks industry levy, which seems to have been around for ages but came into force less than two weeks ago, on 6 April. We are already seeing improvements—a number of soft drink manufacturers have announced that they have or they will reformulate their products to reduce sugar levels. I have mentioned many times in this House the manufacturers that I think deserve credit for doing that and I hope more will follow. More than half of all drinks that we estimate would otherwise have been in scope of the levy have reduced their sugar content to below the levy threshold, which was the intention of the policy.

The sugar reduction and wider reformulation programme is being led and run by Public Health England, for which I have responsibility, and applies to all sectors of industry: retailers, manufacturers and the out-of-home sector, which includes restaurants, takeaways and delivery companies, cafés and the good old-fashioned pub. Public Health England will shortly publish an assessment of progress on sugar reduction, which I eagerly await. We will use that to determine whether sufficient progress has been made in our view and whether alternative or additional levers need to be considered.

The hon. Member for Redcar mentioned the possibility of revision to the child obesity plan. We always said that the child obesity plan was the start of a conversation, not the end. She mentioned Jamie Oliver; I pay great tribute to his work and that of his team, who I met recently just before the Easter recess when we discussed this issue and many others. We have always said that if we need to go further we will, and that assessment that PHE is carrying out on the initial impact of the industry soft drinks levy will be part of the determination of whether we need to do that. I have said in the House before and I will say again that the hon. Lady should watch this space.

In conclusion, the actions that we have talked about and the stuff that we look to cannot entirely eliminate the sale of energy drinks to under-16s. However, I assure hon. Members and the public that this is a matter that the Government, the Secretary of State and I are looking at very carefully. We will monitor the situation extremely closely in the light of the emerging scientific evidence and public concern—I understand that we have to take both into consideration. If we conclude that further Government action is needed to restrict the sale of energy drinks to children, we will not hesitate to act. Our actions have shown in the past that we never hesitate to act when the evidence points us in that direction.

Question put and agreed to.

Medicines and Medical Devices Safety Review

Hannah Bardell Excerpts

Wednesday 21st February 2018 Commons Chamber

[Mr Hunt]

Those are both important points. I will make one comment about the second one. The spreading of best practice is central. We must ensure that we do not just have a system where we have new NICE guidelines, but that we have confidence that it is being implemented across 30,000 GPs in 250 NHS trusts and so on, and I know Baroness Cumberlege will be thinking about that.

[Hannah Bardell (Livingston) (SNP)]

For my constituents Wilma Ord and her daughter, Kirsteen, the wait for action on this issue and to get truth and justice has been almost unbearable. While I welcome the Secretary of State’s candour and tone, the actions outlined today are not enough, and I fear that the baroness, as welcome as she will be to this process, will be doing her job with one hand tied behind her back. The Secretary of State said in his statement that we are not revisiting the science, but then said that we needed to be led by science. Unless I misheard him, there is a contradiction. Will he confirm that the victims affected by all these issues will be at the heart of this, as will the science, because there is an important new study by Neil Vargesson that must be considered in this process in relation to Primodos?

[Mr Hunt]

I do not accept that there is a contradiction. We have to be open to the science and we have to be led by the science at every stage, and if there is new scientific evidence, we must absolutely take that on board. We must also always be led by patients in what we do, and that is exactly what I am announcing.

Hormone Pregnancy Tests

Hannah Bardell Excerpts

Thursday 14th December 2017 Commons Chamber

[Hannah Bardell (Livingston) (SNP)]

It is such an honour to sum up this humbling and moving debate. I commend all Members who have contributed, particularly the right hon. Member for Hemel Hempstead (Sir Mike Penning), and the Clerks, to whom he rightly paid tribute, who drafted the motion. I also commend the hon. Member for Bolton South East (Yasmin Qureshi), who has fought tooth and nail for the victims of Primodos, as has Marie Lyon—she is a modern-day hero as far as I am concerned.

Like other Members, this case was one of the first that came to me after I was elected in 2015. My constituent Wilma Ord, who took Primodos in 1970, is in the Public Gallery with her daughter. Kirsteen was born with a range of birth defects, including profound deafness, cerebral palsy, an underactive thyroid that was diagnosed at age 11, and labyrinthitis. Her mobility is getting worse. I will briefly repeat some of their comments.

This is how Wilma describes what her life has been like:

“Our lives have been turned upside down, are we going to see justice for our kids? It is now that we need it, because every day we see the difference in mobility and it is real. These people need to be taken care of and it is the opportunities that have been taken from them since the day they were born”.

I asked Kirsteen if she would like anything passed on, and she said:

“I don’t see why there was a cover up in the first place. They should fix it now.”

We can never say it often enough, but this place is at its best when we are in agreement, and today we have had cross-party agreement. I am sure the Minister is aware of the strength of feeling. It is also at its best when we are representing and speaking up for our constituents, as everyone has done here today.

Another lady, who did not want to be named, contacted me this week to say:

“I was wondering if I can count on your support on Thursday. My daughter died at birth after I took The Primodos drug, she was born without the top of her brain and skull.

This week would have been her birthday, December 13th.”

So her birthday would have been yesterday. That is harrowing, as it is harrowing to hear about the deformities and disabilities that hon. Members have spoken of.

I must draw on some of the comments that really struck me. The hon. Member for North Devon (Peter Heaton-Jones) talked about our constituents being treated as guinea pigs, and that is, in essence, what they were treated as—human guinea pigs. Let us not forget that this drug was on the market unregulated and untested for five years before any proper research was done on it. The right hon. Member for Kingston and Surbiton (Sir Edward Davey) spoke about the research and the information that came from Germany and some of the vast number of documents that were not looked at by the expert working group. My hon. Friend the Member for Glasgow North West (Carol Monaghan) could not be with us today, but she has spoken about her constituent Russell Kelly, who has also been affected and wanted to share his experience. Russell is the youngest of four children, the other three having all been born healthy. His mother was prescribed a similar drug to Primodos and he has been left with significant disabilities, which has been devastating.

Since the release of the report on hormone pregnancy tests produced by the Commission on Human Medicines, our constituents have been further let down. I was there, as I know other Members were, at the press conference—indeed, the hon. Member for Bolton South East and I were walked out of it. Some of the women who took Primodos told me at the launch of the report that they had been told that they should now be happy and take comfort from knowing that it was not taking Primodos that caused their babies to be born with defects or malformations. How offensive and insulting is it to say something like that to victims who have experienced so much trauma? None of these women is happy or comforted, and many were absolutely shocked, particularly at the fact that the expert working group did not want to watch the Sky documentary that we had spoken about. That seems utterly incredible, but the group said it did not want to be prejudiced.

As we have heard, the report, which was produced by the expert working group, was changed between the draft and final stages. Given the process and the amount of public money committed to it, it is shocking that such a situation has been uncovered. I hope the Government will reflect on everything that has been asked on the judge-led inquiry moving forward, and on how a process can fall down and become so bad. We know that Marie Lyon, who was mentioned by the hon. Member for Makerfield (Yvonne Fovargue), was restricted by the most serious and difficult circumstances as a result of the legal document she had to sign. Marie Lyon wanted to help; she wanted to make the process better. She had information that she could have passed on, but she was not able to do that—because of the document she had to sign, she was not able to do the job she wanted to do. I hope the Minister considers that as well.

I was deeply concerned that what was described as a “scientific process” by the expert working group was not just about the science. Many Members have talked about the concern that arose recently when Dr Gebbie, the chair of the expert working group, was asked about the change from the draft report not being able to reach a conclusion to the final report being able to reach one. Her reply was:

“The CHM all commented very fully and said we should make it more conclusive.”

When it was put to her as a follow-up question that those people are not scientists, she said, “Yes they are.” The point is that those people did not sit through the expert working group for all those months going through the information, so how could they possibly have that information to reach that conclusion?

I know we are pressed for time, so I shall conclude by quoting my constituent once again. She says:

“We need help now, not in 5 or 6 years’ time.”

She says that she does not really want a public inquiry; she wants something to compensate for what has happened to her and Kirsteen. She says that she wants her daughter

“to have a house where there are no stairs, but no one is prepared to give her it.”

She also says:

“We need to have trust in the people who are governing us—we look back at all these years ago and we look at what is happening now and they are still failing us. They let drugs go out that should never have gone out and they were negligent. The same people are not around now so why can’t someone now just do the right thing and say we were wronged?”

Hormone Pregnancy Tests

Hannah Bardell Excerpts

Thursday 16th November 2017 Commons Chamber

[Steve Brine]

My right hon. Friend and I do know each other very well, but I am afraid we will have to agree to differ on this; I do not agree that this is a whitewash. At the request of the Association for Children Damaged by Hormone Pregnancy Tests, an expert, Nick Dobrik, who the House and outside world will know well as a respected and well-known thalidomide campaigner, attended all meetings of the expert working group and was invited to give a statement to the Commission on Human Medicines. Mr Dobrik is many things, but the notion that he is some sort of Government yes-man who would have allowed a whitewash to go on does not stand up to much scrutiny, if any at all.

[Hannah Bardell (Livingston) (SNP)]

A constituent of mine has had one of the most traumatic experiences over the past 24 hours. She was invited to come down and hear the results of that report, and she was not able to travel. Like many other such families, they have children who, they believe as a result of taking this drug, require them being at home to care for them. Does the Minister think 24 hours is a reasonable period of time in which to ask a family to travel to London, often from quite rural parts of the country? Does he also think it appropriate that the hon. Member for Bolton South East (Yasmin Qureshi) and I were locked out of yesterday’s Medicines and Healthcare Products Regulatory Agency press conference? That in itself smacks of a cover-up.

A number of relevant documents were not included in this inquiry, so it is not fair to say that it was comprehensive and independent. Will the Minister consider looking again at the process? A significant amount of public money has been used, and we must make sure, and have confidence that, it was used appropriately.

As we know, “causal link” and “possible link” are two very different terms. Does the Minister think it appropriate that an expert working group changes the goalposts halfway through a process, when it is looking at a matter that is, as he says, so serious?

[Steve Brine]

First, may I correct myself? I might have said that the expert working group met “companies”, not “families”. If I said “companies”, I wish to correct the record.

I agree with the hon. Lady that the notice the families were given was not good enough. I and my colleague in the other place have made that crystal clear. Some notice was given to Mrs Lyon on Friday last week that there was likely to be an event on Wednesday, but that was not confirmed until Monday, so that was the notice the family got, and I do not think that is good enough; I have made that very clear.

On the hon. Lady and the hon. Member for Bolton South East (Yasmin Qureshi), who chairs the all-party group, being locked out of the press conference, I cannot imagine how that happened, and again I have sympathy on that. I expect the MHRA to look into that and explain that to me, because, while we may disagree, I can see how that merely feeds the conspiracy theory that some have around this subject.

Oral Answers to Questions

Hannah Bardell Excerpts

Tuesday 14th November 2017 Commons Chamber

[Jackie Doyle-Price]

I can confirm that that is very much part of our current discussions. In truth, those common standards are shared across Europe in any case, and we will continue to abide by them.

[Hannah Bardell (Livingston) (SNP)]

12. What the timetable is for the publication of the report of the expert working group on Primodos.

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

This is an incredibly sensitive subject. The report of the expert working group on hormone pregnancy tests will be published tomorrow. There will be a written ministerial statement with a copy of the report. This follows a rigorous review of all the available data on this subject by a panel with expertise in the relevant fields of science and healthcare.

[Hannah Bardell]

I welcome the Minister’s statement, although there are some questions about the opaqueness of the inquiry and many other concerns. The lives of my constituents Wilma and Kirsteen Ord and many others have been blighted by the hormone pregnancy drug Primodos. Will he appear in front of the Health Committee, look at the way in which that inquiry was conducted and consider a public inquiry into Primodos so that the families can get truth and justice about how they have been affected by this drug?

[Steve Brine]

I thank the hon. Lady for her question. I am open to offers from any Select Committee. It would be premature to consider issues of liability before considering the strength of the evidence and seeing the report, which we will study carefully. The report will conclude whether there is a causal association between the use of HPDs such as Primodos and adverse outcomes of pregnancy. We look forward to seeing its outcomes and its recommendations.