Child Cancer

Hannah Bardell Excerpts

Monday 28th November 2016 Westminster Hall

[Sir Roger Gale]

The hon. Gentleman is absolutely right. He was also right to pay tribute, as I and others should have done, to the Anthony Nolan trust.

I do not often argue for centralisation, but, in this case, given the scale and the limited resources that are available, it seems that a concentration of effort might deliver more results than a dissipation of that effort.

Finally, I want to endorse what the hon. Member for Alyn and Deeside (Mark Tami) said earlier. There is a crying need for support for families from day one from the moment the diagnosis is made and the family is informed. There is a huge need for support. Some are fortunate in having large and supportive families. Others much less fortunate face terrifying circumstances and isolation.

[Hannah Bardell (Livingston) (SNP)]

I pay tribute to the hon. Gentleman and others who have spoken so bravely. He is making a very moving speech. On support for families, I want to bring to the Chamber’s attention my constituent, Allison Barr, who lost her son Jak Trueman last year very tragically to cancer. She has worked to fulfil his dream of having a den for siblings, because the siblings of children who are lost are often forgotten. She has done a huge amount of work in the West Lothian community to bring Jak’s dream to fruition. We must remember that many different parties are involved when people lose a child to cancer.

[Sir Roger Gale]

That point is very well made indeed.

I conclude by saying that co-ordination and co-operation are necessary. International co-operation is necessary, and support for families is vital. In small rural communities and in close families, support may be built in, but in cities such as London, New York, Washington and Berlin, as in any big city in the world, there are lonely people facing difficult circumstances. I cannot think of any more difficult or more harrowing circumstance than the sudden knowledge that your child is faced with a life-threatening disease. I urge my hon. Friend the Minister to do everything she can to promote the co-operation necessary to solve these problems.

Hormone Pregnancy Tests

Hannah Bardell Excerpts

Thursday 13th October 2016 Commons Chamber

[Hannah Bardell (Livingston) (SNP)]

I speak on behalf of my constituent, Mrs Wilma Ord, her daughter Kirsteen and the many hundreds of thousands of women and families who have been affected by the drug Primodos. It is a sad and tragic irony that this debate follows another hugely important debate on baby loss, in a week when we remember parents and families who have lost their little ones.

Miscarriages, cerebral palsy, brain damage and children being born without limbs are just some of the alleged side effects that the hormone pregnancy drug Primodos can inflict. Dubbed the forgotten thalidomide, Primodos was a drug given to women in the 1950s, ’60s and ’70s to establish whether women were pregnant. Many believe that it caused damage and deformities in thousands of babies in the UK and across the world. Primodos, as prescribed, was 40 times stronger than the average oral contraceptive pill. Recorded tests undertaken by the producing drug company Schering, now known as Bayer, in 1966 found that Primodos was potentially “embryo lethal” and “embryotoxic”. The Medicines and Healthcare Products Regulatory Agency has stated:

“The regulatory and social environments have changed greatly since the 1970s and as a result no medicines are recommended for use in pregnancy unless considered essential.”

I urge the Minister to keep those points in mind throughout this debate and while considering the role he has to play in ensuring the integrity of the inquiry that was set up last year to establish whether there is a link between Primodos and the birth defects.

Before I touch on the detail of the inquiry, I want to pay tribute to my constituent, Mrs Wilma Ord and her daughter Kirsteen, who are here in the Gallery today, along with many other families whose lives have been affected by this issue. They have made long journeys from around the country at their own expense. Wilma has visited me and my staff a number of times and I will speak more about her story later. Marie Lyon, who has been mentioned, has done a power of work and is an inspiration to me and my staff on a daily basis.

I also pay tribute to my colleague and friend, the hon. Member for Bolton South East (Yasmin Qureshi). She has been fighting on this issue for many years. Sometimes we must put party politics to one side for the greater good. Today is one of those days when politicians of all colours stand together in unity to fight for justice for those who have been silenced or who cannot speak for themselves.

On the scope of the inquiry, in October 2014, the former Minister for Life Sciences, the hon. Member for Mid Norfolk (George Freeman), ordered an independent review of all papers and evidence linking hormone pregnancy tests to birth defects, following wide-scale concerns raised over many years by many Members of the House. I have been following recent developments in the progress of that inquiry and have grave concerns about its scope and the way in which it is being conducted. In summary, I am concerned about conflicts of interest, as there is a lack of clarity on the framework, including the scope of work and the decision makers; the evidence being presented to the group; the lack of focus on regulatory failures; and, finally and most importantly, transparency and openness.

On the conflicts of interest, my concerns are severe yet simple. Panel members have been asked to self-declare their interests. We know of one instance of an undeclared interest that went unnoticed until highlighted to the individual. That suggests that no proper checks are in place to ensure that declarations are made. There is no clarity on how or whether such conflicts of interests are declared or investigated, or on how it is decided whether they are conflicts of interest. There is a lack of clarity on who is responsible, if anyone.

It was thought appropriate to invite an expert panel member as a visiting expert who was later removed from the working group because of his previous associations with the drug manufacturer. I am concerned about the logic in deciding, first, to invite him as an expert and then to remove him because of a conflict of interests. Who is making those decisions and why are they being made?

I and other members of the all-party group on oral hormone pregnancy tests were told in a letter from the chair of the expert working group that

“no core members of the Expert Working Group have declared any interests in Bayer”.

What is a core member? How has the information given been verified? Is it acceptable for non-core members to be associated with Bayer? The letter also states that there are “participant categories”, but again there is no explanation available of what that means or who decided those categories. It further states that all recommendations about who ought to sit on the working group

“were considered and where appropriate, endorsed by the Chair, taking into consideration the expertise required for the Expert Working Group and following consultation with the MHRA Executive”.

What expertise does the chair consider is required? Is it up to only the chair to decide or is it decided in conjunction with the MHRA? Are they the correct people to decide, particularly in the light of what I have just said about decision making?

I know from a particularly odd experience of my own concerning a panel member —the hon. Member for Bolton South East also mentioned this situation; we are unsure whether the person in question is a core member—that there is a potential conflict of interest. Earlier this year when we convened with Marie Lyon we came across a website for something named “bumps/UKTIS”—that stands for UK Teratology Information Service. It purports to be funded by Public Health England. It was with some concern that we read an article on that site on the apparent safety of Primodos. By way of example, I quote just one section, which states:

“Although older smaller studies suggested a possible association between oral hormonal pregnancy tests and congenital malformation, subsequent larger prospective controlled studies showed no increased risk.”

That is doublespeak at its worst.

Upon noticing the article, I telephoned the number on the website to ask about its content and share my concerns. The gentleman with whom I spoke assured me that the head of UKTIS, who wrote the article and whom he named during the call, had lots of knowledge on the subject on account of her sitting on the expert working group. The content of the article has also been tweeted on numerous occasions. Members may imagine my dismay not only upon reading the article, which suggests to the public that the drugs are safe—as we all know, that at best remains uncertain—but upon then learning that a member of the working group was behind its content.

The review’s scope is to

“examine the evidence to assess whether there are grounds for accepting a link between the use of HPTs and the conditions experienced by some patients.”

Given that, will the Minister consider how independent and impartial the expert working group truly is or can be? Is the situation I have outlined not in fact a clear conflict of interests? Is that particular member of the working group a “core member”, expected to make a decision on whether there is a link between hormone pregnancy tests and birth defects in babies? I would suggest from her tweets that her decision is already clear. That would appear to undermine the whole purpose of the formation of the working group.

Given the obvious conflict of interest, I wrote to the chair of the inquiry panel, who I thought had a duty to check on such conflicts, for confirmation that that group member had declared an interest. I also asked what measures were taken to decide that no conflict existed. I suggested that, if it was not declared by the panel member, it should be investigated, and asked whether it was investigated. Given that one member had already been asked to leave the panel following an unveiled conflict, I looked for assurance that checks and balance were in place. I wrote and sent my letter at the end of August and am yet to receive a response.

Given the gravity of my concerns, combined with other alarming evidence that all hon. Members have seen, I get a sense not only that something is amiss with the inquiry, but that it smacks of a continued cover-up on a significant scale. I do not use those words lightly. My final question on conflicts is this: how can we have confidence in the membership of the working group, and have the members been carefully considered to ensure an appropriate balance and expertise while maintaining impartiality?

The letter from the chair that sought to reassure the all-party parliamentary group members about the documentation being considered by the group raised more questions than it answered. We were told that

“members, invited experts and observers were recently given access to all of the documents the MHRA had so far used in preparing the assessments…These are the documents that have been used as a basis for the MHRA papers for the first four meetings including 11th August meeting.”

In case anyone missed that, I will say it again: the documents given to the expert working group panel have been used by the MHRA to prepare assessments. What exactly does that mean? It strikes of the MHRA cherry-picking what the panel members get to see. Frankly, that is not acceptable. How can it make decisions based only on MHRA-chosen information when there is a vast amount of information available on Primodos? How does that fit with the order from the hon. Member for Mid Norfolk for a review of all of the evidence and papers?

I fully appreciate that I have delved into significant detail, which we occasionally lack in the House, but I hope the significance of it is not lost on the Minister when he considers the numerous documents found in the Germany and Kew archives, some of which I have seen and will describe later. Furthermore, articles published in Der Spiegel in July released damning information about Bayer and Primodos and Duogynon, as it is known in Germany. The article is exceptionally detailed and includes the many failings of Bayer and the deliberate suppression of evidence. I will of course be more than happy to share the documents with the Minister.

My concern with the lack of focus of the inquiry into regulatory failures relates to my concern about the evidence provided to the working group. By way of example, let me share the experience of my constituent Mrs Wilma Ord and her daughter Kirsteen. Mrs Ord came to see me when I was first elected. She had been pregnant in 1970 and gave birth to her daughter Kirsteen, who was born with multiple defects, including cerebral palsy, profound deafness, asthma and bone density issues. Mrs Ord had taken Primodos to test whether she was pregnant. Her medical records, which she brought to my office, show a gap between 27 November 1968 and 27 January 1971. In other words, there is no evidence of her ever being pregnant or being prescribed Primodos by her GP.

Having tried desperately to track down her missing medical records, my constituent received a letter from NHS Scotland, which states:

“I refer to missing notes for the period 1969 to 1970...I have done a full investigation and contacted all the previous GP practices you gave me and also checked our offsite storage...but with no success. Unfortunately we have no way of knowing when or where these notes were lost or mislaid at a practice”.

Evidence I have seen—I do not know whether it has been provided to the expert working group members—shows that Schering knew of GP concerns from the 1960s about the adverse effect of Primodos experienced by their patients. I have also seen documents showing that Schering sought legal advice, and that it was told that it would be more than likely to be found guilty of negligence by a trial judge.

I have seen a document saying that Schering should try to “buy off” a family who were attempting to take legal action against it because there was no telling how many more cases there would be. I have seen a document with my own eyes dated 13 March 1964 clearly stating that, for GP doctors worried about adverse reactions, it would be best for them to destroy any evidence or records to protect themselves “however wrong that was”. I ask the Minister to think again about where Mrs Ord’s missing medical records may have gone, and about the adequacy or relevance of the documents that are actually being shared with the expert working group.

[Carol Monaghan (Glasgow North West) (SNP)]

I am listening to my hon. Friend with great interest as a scientist who will always make decisions based on evidence. It seems there is a lot of evidence missing, both in terms of documentation and scientific research. Does she agree that one of the big issues for many people affected is that they feel responsible themselves? Some people have not done all the work her constituent has done and the burden they are carrying is really quite severe at this point.

--- Later in debate ---

[Hannah Bardell]

I could not agree more with my hon. Friend. Many families around the world do not have the answers. Their children have been affected and it is nothing short of a scandal that, many, many years later, they still do not know. It is therefore very important that we ensure the inquiry is effective and ask what other steps we can take.

I ask the Minister to consider whether the scope of the inquiry should be increased to look at why it was apparently hidden that the drug was known to be potentially unsafe in the 1960s or even earlier. I should mention the eight years—this has been mentioned by other hon. Members—from 1967, when the adverse reaction committee advised that there was cause for further investigation of Primodos, to 1975, when the Committee on Safety of Medicines actually issued its warning. The Minister may also be interested to know that Norway and Sweden banned hormone pregnancy test products in 1970. In Norway, it was said to be blacklisted after evidence was submitted that the test caused foetal malformations. Finland banned it in 1971. Germany issued a warning notice in 1972, the USA in 1973, Australia, Ireland and the Netherlands in early 1975, and the UK, finally, on 4 June 1975. Notably, a document shows a comment by a Dr Inman on 15 October 1975 stating that

“we are defenceless in the matter of the eight year delay”.

The families affected are now concerned about this inquiry being a whitewash. They are concerned about a Hillsborough-style situation where there have been years of cover-ups and an inability to get information they have asked for repeatedly. In early July of this year, an article in the German newspaper Der Spiegel reported from old court files that it had gained access to:

“Schering was warned in the late sixties by various animal tests. They had knowledge of possible side effects of this hormone drug.”

Tests were conducted with different dosages, with the result that some dosages resulted in disabilities and the death of foetuses. Other tests showed that animals showed weight loss. In 1971, a scientist recorded that a test dose was

“highly embryotoxic and a cause of early cell death.”

Earlier this year, a major radio station in Germany broadcast a 45-minute documentary on Primodos. Here are just some brief extracts of the stories told:

“My name is Petra Marek and my mother has taken Duogynon as a pregnancy test, but was unaware of what consequences this would have”—

[Madam Deputy Speaker (Natascha Engel)]

Order. I remind the hon. Lady that she is a Front-Bench spokesperson and this is a Back-Bench debate. I am already going to have to impose an informal time limit of 10 minutes per speaker. If she could start to get to the end of her speech, we would all be very grateful.

[Hannah Bardell]

Thank you, Madam Deputy Speaker. I will wind up my comments as quickly as I can.

Another said:

“My name is Birgit Rothlaender. I am almost 50 years old, I have a deformation of my genitals and I have a colostomy for the last 43 years. I think enough is enough, I would like to get 100% confirmation on what happened.”

Let me be clear that for the families who have suffered for decades, this is not about money. It is absolutely about unveiling the truth. The Scottish Government have raised and continue to raise the issue of the independent panel with the UK Government and the MHRA. Public money is being used for this inquiry and it would be an absolute dereliction of duty if it was misused. We must ensure that we do right by the victims of Primodos. We must have an effective inquiry and get the answers for the families which they so desperately need.

--- Later in debate ---

[Seema Malhotra (Feltham and Heston) (Lab/Co-op)]

Thank you, Madam Deputy Speaker, for the opportunity to speak in this debate on this devastatingly sad topic. I also thank the Backbench Business Committee and my hon. Friend the Member for Bolton South East (Yasmin Qureshi) for securing the debate today. It is an honour to follow some passionate speeches today. I pay tribute to Marie Lyon and the hormone pregnancy test campaign for their powerful representations in telling their own stories and the story of Marie’s daughter in the media.

Much that we take for granted today, given the improvements in health care and the ease of pregnancy tests, sheds an important light on what happened 40 years ago. It is a matter of great sadness and shame that it happened in our country. Many of the tributes and stories that we have heard today show that many are still living with the consequences and that we must learn the lessons. This inquiry and our confidence in its findings is critical not only to close this chapter of our history but to ensure that lessons are learned and clear findings will be adhered to in the future when it comes to regulation and the description of how medications should be used.

When I first came to hear of this issue, I found it hard to comprehend why it seems to have taken so long for those who were prescribed Primodos to get clarity and answers about what happened to them, for the issue to be comprehensively researched, for an explanation to be given about why the drug continued to be used after concerns were raised and for families affected to be given an apology and justice. Studies in the UK and elsewhere from the late 1960s into the early 1970s suggested a link between the use of hormone pregnancy tests and a range of abnormalities including cleft lip, limb reduction and heart abnormalities.

Bethan Dickson from my constituency was affected after her mother took the drug. I want to thank her for having the courage to come and meet me about this issue and for giving me permission to share her story with the House. She says:

“My name is Bethan Dickson, I am 48 years old and work as an occupational therapist in West London. But I was born in 1968 in South Wales with heart and limb defects that have impacted on my entire life. My mother was given Primodos, an oral pregnancy test, by her doctor and I believe that this is the cause of these physical defects.

Along with members of the Association for Children Damaged by Hormone Pregnancy Tests I am supporting an inquiry into how this damaging drug could have been prescribed to mothers when there were already concerns raised about its safety.

I feel it is important that accountability is accepted by the drug company who put profit before patient safety, and for the government to acknowledge its responsibility for not ensuring that the citizens of this country were protected from harm.

I was born with a heart murmur and poorly formed bones in my feet. I experienced some shortness of breath as a child, slept poorly as a baby and was restricted in sporting activities. The heart murmur did not require a surgical intervention, but I had frequent and regular visits to cardiologists.

I suspect that many Association members can relate to waiting to see the doctor in hospital in the 1970s and '80s and knowing where you are in the queue because you can see the thickest medical record in the stack and knowing that it’s yours. Thankfully the introduction of electronic medical records means I don’t suffer that particular humiliation any more.

The defects in the bones of my toes became more obvious as I grew, and from my earliest memories (about six years old) I remember pain in both feet that prevented me from participating fully in activities in school.

When I was nine years old the orthopaedic surgeon in the local hospital recommended surgery to address the deformed joints. He felt that although I was still growing the pain I was experiencing needed to be addressed sooner. I had my first orthopaedic surgery in 1980, but the problems have persisted and I have required six further surgical interventions since then.

The pain today varies depending on the activity, but prolonged standing or walking is painful. I have been fortunate to have had excellent healthcare both in South Wales and in west London to address my physical impairments; and lucky enough to have had loving parents and a husband to give me the strength and support to deal with the emotional strain of dealing with the ongoing difficulties.

I have been able to live a full life, going to university, working full time and making a contribution to society in my capacity as an occupational therapist. Every day at work I meet people with disability and physical or cognitive impairments, but nothing prepared me for my first meeting with other Association members in June 2014.

The severity of impairments in some of my contemporaries both shocked and angered me. Some have profound disabilities that have prevented them from living a full life, and left them dependent on carers and family for care and support. This could have been avoided with responsible oversight of the drugs being given to expectant mothers, and more robust testing of drugs before they were brought to market across the world.

When I met other Association members I felt guilty that their suffering was so much worse than mine, and then felt guilty that I was relieved at that. My mother along with the mothers of many members feels guilty that she took a tablet that caused these lifelong problems to her child.

Of course logically I understand that the guilt does not lie with me or my mother, but in the absence of any form of apology or recognition of wrongdoing by the drug company or the government we do not have closure or the confidence this won’t happen again.”

[Hannah Bardell]

The hon. Lady makes the absolutely crucial point that, until the families have answers, they cannot deal with the trauma and they cannot get the proper counselling and support that they deserve.

[Seema Malhotra]

I thank the hon. Lady for her intervention. That is certainly the reason why Bethan Dickson has written to me. She said:

“That’s why I support an inquiry to establish the facts and explain to the country how this could have happened just a short while after the Thalidomide scandal.”

Bethan’s story highlights the impact of this drug and how it was prescribed and the effects that it still has to this day. I have been struck as well by the work of Marie and her campaign, their patience and their systematic and honest work. They have desired to work in partnership simply to find answers, for justice and to ensure everything is done so that this does not happen again, but I am concerned that they are not being met halfway by an inquiry that does not appear to have had effective governance while there are concerns about the constitution of the panel, the robustness of its procedures and the approach to the evidence collected and how it is analysed.

I want to close my contribution today with some questions to the Minister and some commitments that I would like to hear being made today. I believe that it is time to make sure that there is commitment today to respond to the issues raised and to do so formally in writing to my hon. Friend the Member for Bolton South East; to reconfirm the status of the inquiry, its terms of reference and its timetable for delivery; to say how quality will be ensured; to explain what action is being taken to address the concerns that have been raised by hon. Members today; and to state on the public record that Ministers will see through their commitment on this inquiry to a report and findings that will command the confidence of the House and, indeed, the families and victims who have waited so long for those answers and for justice.

--- Later in debate ---

[David Mowat]

I accept that, which is why I have made the offer. I guess the caveat is that, in the end, science will play a big part in getting to where we need to be. The science will find its own path, and I want to talk a little about how we are trying to achieve that.

As hon. Members have said, two years ago my hon. Friend the Member for Mid Norfolk (George Freeman), who was then the Minister for Life Sciences, established an inquiry that, at the time, was committed to having an independent review of the evidence and to attempting to find a scientific link between the hormone pregnancy test—in particular, Primodos—and the adverse effects on pregnancy and all that goes with it. It is worth saying at this point that, as hon. Members have said, this is an international issue that has been around for 40 to 50 years. We are the only country to have set up such an inquiry, and the only one to have attempted to find a scientific route to the truth in this way.

[Hannah Bardell]

Will the Minister give way?

[David Mowat]

I will continue to make progress, but will come back to the hon. Lady.

Two years ago, the MHRA was charged with putting the inquiry in place. It worked with the Commission on Human Medicines to set up an expert group, whose job was to establish whether there was a scientific link between the drugs prescribed and the adverse effects. The first meeting was a year after that, which was a long time. I apologise for that on behalf of the Government; I think it was too long. I have inquired why that was, and I have been told that there was the election and the purdah period, but it was too long. The group has met four times, and its next meeting is on Tuesday next week. I think we can all conclude that the members of the inquiry will be watching our proceedings and listening to the points that have been made. At that time, the review’s focus was on the science to establish whether it could be shown that there was a link between the drugs prescribed and the adverse effects. The terms of reference were subsequently altered to cover going into the lessons learned.

[Hannah Bardell]

I absolutely take on board what the Minister is saying—he is being very positive, and has clearly listened to the concerns we have raised—but I have a couple of comments. First, the fact that we are the only such country is surely a good thing given how far behind we lagged. We have an opportunity to lead the world on this and to show how this can be done positively. Secondly, as he says, no Government members want the inquiry to fall down. Is it not therefore his duty to intervene to make sure that it has the right resources, the right expertise and the right processes?

[David Mowat]

There is nothing in that intervention with which I disagree. We all want the inquiry to work. The Government have not established an inquiry in order for it to fail. We have not established an inquiry for it not to have the confidence of the association. We need to get to the truth, but that is a scientific process, and because it is a scientific process, it can be frustrating and long-winded; it can take a long time.

I want to talk about some of the concerns that have been raised. There were three types of concerns. The first was that the independent group of experts is not reviewing the regulatory concerns or the delays that took place at the time, in particular the failures of the then Committee on Safety of Medicines and the five or eight-year delay, which we have heard about. The UK was not the first country to ban the drug, but it was not the last either. The second concern, which I will talk about at some length, was that members of the expert group might not be independent and might not have fully declared their conflicts of interest. We have heard words like “colluding” and “cover-up” from some Members. The third concern was that not all the available evidence is being considered by the group, and we heard about the German material not being translated. I will address all three points.

On the first issue, we have heard that there was a regulatory failure and that the inquiry should look at it. I say to the House that if, when the expert group reports next spring, it finds a clear causal link, that will be the time to take further action on issues such as regulation and liability, and everything that goes with that. The first step we are taking is to establish the science. The group that has been set up is an expert group. It is science-led. It is important to make it clear in the House that we are not criticising individual members, because they are striving to get to the truth. It is a group of eminent people.

It would be quite wrong if we conflated the possible eventual need to look at the regulatory actions that were taken, the legal liabilities and everything that goes with that, with the first step of the process, which is to establish whether the science leads us to that link. In spite of some of the comments that have been made today, that has not been done yet in any country. The first serious attempt to do it is the one that is going on now.

The second concern is that the expert working group is not impartial. The MHRA has taken a vigorous approach to evaluating and handling potential conflicts of interest. No member of the expert working group can have any interest in any of the companies that were involved or their predecessors. Members should not have publicly expressed a strong opinion, favourable or unfavourable, about the possibility of birth defects arising from these drugs. We heard that one of the members had tweeted. If there is evidence of that, we will follow it up. It is true that one member not of the expert group, but of the advisory group was removed because it was felt that he had a conflict of interest that was not properly declared. Action was taken very quickly in respect of that.

The inquiry is chaired by a consultant gynaecologist from the Chalmers centre in Edinburgh. The group has 14 scientists drawn from some of the best universities in the UK. We have no reason to believe that any of them have any more reason not to want to get to the truth than Members on both sides of this House.

Baby Loss

Hannah Bardell Excerpts

Thursday 13th October 2016 Commons Chamber

[Will Quince]

Indeed. I absolutely agree with the hon. Lady. Moreover, I thank her for the huge role that she plays on the all-party group, and played in its formation.

To come back to the point that I was making about the importance of today’s debate, we are really lucky—I hope that all hon. Members agree—to have the best job in the world. We have a duty and responsibility to try to use our experiences—some great, some good, and some terrible—where we can to make the lives of others better. Through this debate, we would like to, in the fullness of time, reduce the stillbirth rate and neonatal death rate by 50% and save the lives of 2,000 babies. That is an incredible target to aim for.

[Hannah Bardell (Livingston) (SNP)]

I congratulate the hon. Gentleman and other Members on being so brave and speaking out in this debate. In the spirit of sharing experiences, friends of mine who were due to have twins sadly lost one due to twin-to-twin transfusion syndrome. Does he agree that it is important that, in the aftercare for parents who have lost babies, we consider the very different nature of, for example, multiple births, and ensure that care is tailored appropriately in all circumstances?

[Will Quince]

Absolutely; the hon. Lady makes a very good point. I will mention that a bit later. Charities such as the Twins and Multiple Births Association do incredible work in this field; one of my hon. Friends raised that issue earlier.

Stillbirth

Hannah Bardell Excerpts

Thursday 9th June 2016 Westminster Hall

[Hannah Bardell (Livingston) (SNP)]

Thank you, Sir David, for the opportunity to speak in this debate, the subject of which is of such huge importance. I pay tribute to my hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) for bringing this issue, and her own tragic experience, to the attention of the House, an act of true bravery. I cannot imagine how hugely difficult it is for her and others who have contributed to the debate to speak so openly about losing their children. Equally, I cannot imagine how difficult it is for any parent or family to lose a child, but today is about raising awareness of stillbirth, and I will highlight to the House the case of dear friends of mine who had twin girls last year, but, tragically, lost one of them, Sophia Faith Fraser, who was born sleeping as a result of a little-known complication called twin-to-twin transfusion syndrome.

My friends were delighted and instantly felt hugely privileged and special to discover that they were to have twins. However, at their 20-week scan they were referred to the foetal medicine unit at the Queen Elizabeth university hospital in Glasgow, as their identical twin girls looked to be suffering from severe complications. The doctor confirmed their fears; their girls were suffering from stage 2 twin-to-twin transfusion syndrome. TTTS is a rare disorder, which can happen in identical-twin pregnancies and, simply put, is an unequal flow of blood between the twins across the shared placenta. One baby donates blood across the placenta to their twin, becoming dangerously anaemic, and the recipient twin becomes so overloaded with blood that they are at risk of heart failure. It is a critical condition, which can be fatal to both babies.

My friends’ doctor explained that laser surgery would be the best option, to try and correct the blood flow by closing some of the vessels the girls were sharing, but the procedure carries major risks, and the parents were advised that they could lose one or both of their girls. If left untreated, however, there was only a 10% chance that both girls would survive, and they would be very likely to suffer brain damage. As we can imagine, the parents wanted to help their girls in any way they could, so they decided to go ahead with the laser surgery.

The case carried a high risk of complications so, two days later, Sophia’s mum was taken to Birmingham, where their doctor could perform the surgery with the support of a specialist team. The laser surgery went well, closing some of the shared vessels through a small incision in Sophia’s mum’s abdomen. Two litres of fluid were drained from her womb, a dangerous side effect of the TTTS, and her parents were told that a scan would be performed an hour later, to tell if there were still two heartbeats. That was the longest hour of their lives, but they were overjoyed when the scan showed that both girls had survived the procedure, and had already begun to make improvements. However, the parents were warned that the next few days were critical and, a week later, during a check-up, it became apparent that although the laser surgery had corrected some of the flow, it had not solved the problem completely.

Sophia, the donor twin, was in grave danger and required a blood transfusion, which was given directly into her stomach through her mother’s stomach with a fine needle. That procedure carried great risk not only for Sophia but for her sister, Eloise. Without it, however, Sophia could not survive, and the parents wanted to do everything possible. Their aim was for the girls to make it to 28 weeks’ gestation, when they could be delivered and given a higher chance of survival. The blood transfusion brought some success, and the procedure was repeated to try and build up Sophia’s blood supply. However, heartbreakingly, when her mother was 25 weeks pregnant, Sophia passed away. The parents were devastated; she had fought so hard and for so long. They felt they were living in a nightmare, and—as they described it to me—one they could still not wake up from.

My friends were grieving for Sophia while fighting hard for Eloise, who was still in danger and had to be scanned every two to three days. Sophia and Eloise’s mum bravely carried both girls until she was 34 weeks pregnant when, after a check-up, she was given an emergency caesarean section due to a bleed in her womb. Eloise Hope Fraser was born at 6.46 pm, weighing 4 lbs 7.5 oz, and her little sister, Sophia Faith Fraser, was born sleeping shortly afterwards.

Both girls had been very poorly during the pregnancy, with the uneven blood flow endangering their lives and putting them at risk of severe long-term health problems or brain damage. The girls’ parents believe that Sophia knew how ill she was and let go, giving her big sister a special gift, the gift of life. For that, they think she is a brave and amazing little girl, who will always be an important part of their family. I know they could not put into words how much they love her and her sister, Eloise. Eloise is now thriving, and making her little sister proud every day.

My friends’ case is rare, but not unique. They have often said to me that the care they received during their pregnancy from the foetal medicine unit was absolutely outstanding. They described Dr Janice Gibson as the most dedicated and skilled medical professional they had ever met. She held their hands and cried with them, and she gave them hope and sound advice. They can never repay her for what she did for their family. Dr Gibson is the only person in Scotland trained to carry out the laser procedure, and funding is needed to support ongoing training and families going through similar experiences. The couple now hope to raise money for this important cause, which they have been doing through the Sophia Fraser Foundation. The money they raise will support foetal medicine through the Yorkhill Children’s Charity.

I tell Sophia’s story today, with her parents’ permission, to highlight some of the unknown complications and rare disorders that can occur during childbirth, such as the twin transfusion syndrome. Aftercare and bereavement support for parents, as has been said, is so important, and I pay tribute to Sands, which does work in my West Lothian constituency and across our countries to support families who have lost children to stillbirth or neonatal complications. We have come a long way in medical developments, and although Sophia’s mum had the best care she felt she could have had, we must continue to raise awareness and work to improve services and care so that lives can be saved, and so that parents do not have to go through what Patricia or Sophia’s parents have gone through.

World Autism Awareness Week

Hannah Bardell Excerpts

Thursday 28th April 2016 Commons Chamber

[Pauline Latham (Mid Derbyshire) (Con)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing this important debate. I realised the importance of this subject just before the last election when I met a group of parents in my constituency who were talking about the problems that they had experienced. I had previously met people with autism, but I had not understood the pressures that parents and families are put under by the diagnosis, or even by not having a diagnosis of their children’s problems.

I met people who had never received a diagnosis and did not think that they would get one because nobody seemed to recognise that their child had autism. However, it was clear from what they said that the children in question were suffering from a form of autism, although it had never been recognised. Those parents were at the end of their tether and did not know where to turn to next. It is not just mums who have this problem; there were also a lot of dads at that meeting. It is not only about children; it is often adults for whom even less support is available. Whole families are affected, and autism can cause such a big strain that it affects the parents’ marriage or partnership. Many of those situations break down when people have one, two or even three children with autism.

I want to focus on local situations in Derby and Derbyshire, where I feel that the system is failing children who need the diagnosis and help in schools. Through an active group in the area—particularly in Spondon—I have met many people who have autism or whose children have autism. Last year and this year the cathedral has been lit up blue to highlight National Autism Week and to show people that there is a problem in that area. I commend it on that.

[Hannah Bardell (Livingston) (SNP)]

The hon. Lady is making interesting and powerful points and has mentioned the problem that people with autism face. In my office I have employed someone on the autistic spectrum. Does the hon. Lady agree that we need to change the narrative in some respects, because people on the autistic spectrum have specialist and incredible skills, and it is so important that we are positive about those people and the opportunities that they provide to society?

[Pauline Latham]

I completely agree. There are some incredible people with autism, but I am talking about the problems that they need to overcome to access proper education and help for themselves and their families. We must focus on the fact that it is the system, not the people, that is the problem.

In Derbyshire, families have to wait far too long between getting a referral for autism spectrum disorder and a diagnosis. Local authorities need better training for local authorities and schools regarding education, health and care plans and dealing with ASD pupils. We need a better transition from special educational needs statements to the new EHCP, and that has been badly managed in my area.

ASD behaviour and management strategies should be a mandatory part of the teaching qualification for teachers and teaching assistants. There also seems to be a lack of knowledge by parents on the legal rights and services available to them as a family dealing with autism, and we as a society need to recognise that and put out more information for those who are dealing with autism. Guidelines from the National Institute for Health and Care Excellence recommend a maximum of three months between a referral and first appointment for an autism assessment. It has been estimated that in Derby that takes closer to 12 months, which is far too long when a child is having problems with their behaviour in school and needs help now.

The Children and Families Act 2014 mandated local authorities to move from special educational needs statements, which outlined a child’s needs and how help would be given, to an education, health and care plan for each child. It also reduced the amount of time that children with special educational needs had to wait for an education, health and care plan from 26 weeks to 20. However, in Derby city the average wait is 35 weeks, and that is after people have already waited for 12 months. Derby local authority did not make sufficient plans to prepare itself for that change, and it has been on the back foot ever since. Until February 2016, only 12% of statements had become education, health and care plans, which is really unhelpful for families. That gap causes delays in the child’s educational development, and places additional stress on the families caring for them.

I believe that Derby city is now asking schools to complete the education, health and care plans even though they are not meant to, and the training provided to school staff on changes to the law has been labelled by some parents as “diabolical”. Admin staff at schools do not understand the difference between a special educational needs statement and education, health and care plans, because they often copy and paste them. Without an EHCP, children on the autistic spectrum disorder are managed by inexperienced staff with a fundamental lack of understanding of ASD.

Derby city local authority has to employ consultants who know what they are doing to help make changes, but they cost four times as much as usual school administrative staff. When all local authorities claim that they are short of money, that seems to be a complete waste of money, although if it gets the process completed more quickly for families and children with autism, it is obviously better for them. However, that money could be better spent on mental health care for autistic children and their families.

If local authorities consistently ask schools to carry out the care plans, as is happening in Derby, we must ensure that schools are given the necessary funds and training for that. There is no obvious legal accountability if deadlines are not met. We must support the parents and siblings of children with ASD. Early diagnosis is key to avoiding the mental health problems associated with not knowing what is wrong and being able to deal with it, and we must move faster to help those children and families to deal with their problems.

--- Later in debate ---

[Norman Lamb]

That brings me nicely on to my next point, because I was going to say that this is not one Government’s responsibility; we all have to learn and understand more. The article in The Economist made clear the strong economic case that if we invest in diagnosis and early intervention, we will save a fortune in lifetime care. As we learn, the Government have to respond. That is the challenge. This Government, because they are here now and because new learning can lead to improvements, have a responsibility to respond.

[Hannah Bardell]

The Library briefing paper states that

“the Government does not collect data specifically on employment rates for people with Autistic Spectrum Conditions”.

We should campaign, cross-party, to change that and work with business to get interviews that are friendly to those on the autistic spectrum.

[Norman Lamb]

I totally agree with that. As a former Minister, I recognised during my time in the Department of Health that, whether it be mental health, autism or learning disabilities, we operate in a fog. There is an absence of data that have been analysed and understood. If we are to make the improvements of which we are capable, we have to understand the evidence, which involves the collection of data.

I want to highlight the failures of society and the extent to which we treat people with autism as second-class citizens by referring to two cases. The case of Connor Sparrowhawk, who tragically lost his life through drowning in July 2013, has been much documented recently, and his mother, Sara Ryan, has been an amazing campaigner, fighting for justice. The Oxford Mail reported this morning about a recently leaked report, produced for the NHS trust some 11 months before Connor lost his life, that demonstrated failures of care in his unit. The article states:

“The report found Slade House was particularly poor, flagging up issues with a ‘lack of clarity of care plans’, ‘no clear understanding of a ‘locked door policy’

and so on. What is the point of commissioning reports at enormous expense if their conclusions and recommendations are ignored?

There has been great focus this week on the importance of the accountability of public bodies following the shocking conclusion of the inquest into the Hillsborough tragedy, but that importance stretches across all public bodies and into healthcare. It is important that organisations recognise their responsibility to involve the families of those who lose their lives in investigations and to have an open and learning culture, rather than a closed culture that excludes families. The trust’s treatment of Sara Ryan in the investigation of Connor’s death has been truly shocking. There must be accountability and a willingness to learn from mistakes and to take account of any recommendations.

As we try to get people out of assessment and treatment units, where they are often left for too long, the Health & Social Care Information Centre has found that 15% of the transforming care cohort, of which the Minister will be aware, have autism and no learning disability and that 23% have autism and a learning disability. When looking at the transforming care partnership plans and the outcomes for individuals, it is important that the Department ensures that the specific needs of autistic people are included and addressed.

Finally, I want to refer to the case of an extraordinary constituent of mine. A nine-year-old boy wrote a letter for his parents to take to a meeting that I had on his behalf with the authorities at Norfolk County Council, and he ended up being interviewed—at the age of nine—on the “Today” programme, and it was a remarkable interview. He movingly wrote in his letter:

“I normally say to myself you have to keep on going. I normally also say ‘is it worth it’. I could just kill myself. I wouldn’t have to face today.”

That comes from a nine-year-old boy. His family has been left waiting some two years for a diagnosis without any real support. They have been told that he does not meet the threshold for care from the Child and Adolescent Mental Health Services. Other hon. Members have highlighted similar cases, with the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan) talking movingly about her experience, for example. The family, by borrowing from relatives, have managed to pay for some support for their little boy, but what about all those families who cannot afford it? It is intolerable. We cannot justify a society in which children get help if they have articulate parents or parents with money, but where those without go without.

As we seek to implement maximum waiting time standards in mental health, something which I have made my mission, my plea to the Minister is that we include autism and follow the NICE guidelines that the first diagnostic assessment should start no later than three months after GP referral—not 36 months, as I am told is sometimes the case in Norfolk, or 24 months, as in many other parts of the country. The result will be that society and the Government will save money in the long run if we make the investment in diagnosis and treatment at an early stage.

Mental Health

Hannah Bardell Excerpts

Wednesday 9th December 2015 Commons Chamber

[Hannah Bardell (Livingston) (SNP)]

I congratulate the hon. Member for Liverpool, Wavertree (Luciana Berger) on securing the debate, in which it is a great privilege to speak.

On 11 April 2002 football fans in England held their breath after David Beckham famously broke the second metatarsal bone on his left foot and was ruled out of the World cup, a mere 50 days before it was due to kick off. Over the following days and weeks the good footballing fans and folk of England watched with trepidation as Beckham recovered and eventually scored the winning goal against Argentina to take England to the quarter-finals. Most Members in the Chamber will be wondering what on earth this tale has to do with the matter of mental health. A great deal, because at the heart of this issue and the debate is parity of esteem for mental and physical health and ultimately how we frame our vision and views of mental health. In Scotland we have parity of esteem in Scottish legislation.

If David Beckham had suffered mental health issues which prevented him from training or playing, would we have tracked his progress and wellbeing with such careful attention? Would he even have admitted to having had a mental illness? I am speaking hypothetically, but for a variety of reasons we often treat mental health completely differently from physical health, and there is no good reason or explanation for that. How we frame the debate is hugely important. According to the charity Mind, which surveyed almost 6,000 people in January 2015, over a third of people—40%— come up against stigma and discrimination on a monthly and weekly basis, and over half the people surveyed said that stigma and discrimination were as bad as or worse than the illness itself.

In Scotland we are proud that the early introduction of targets for child and adolescent mental health services has supported substantial increases in the CAMHS workforce. The Scottish Government are investing over £100 million over the next five years to ensure that our health service is equipped to train the workforce that offer these vital services. I pay tribute to the great work of organisations such as the Scottish Association for Mental Health, which recently launched its “Give mental health a sporting chance” campaign. In partnership with Chris Hoy, SAMH is building on the success of sport in Scotland, such as the 2014 Commonwealth games. Its chief executive says:

“The time is right for sport to use its collective power to tackle the stigma and discrimination around mental ill health.”

It is important in a debate such as this to recognise the root causes of mental ill health and how we can ensure that every child and young person gets the very best start in life. That is why I find it incredible that the UK Government are choosing to continue with their austerity agenda, when a recent report by Psychologists Against Austerity called “The Psychological Impact of Austerity” states:

“It’s now well established that austerity has hit the poor much harder than the wealthy: we have indeed, been ‘balancing the books on the backs of the poor’”.

The report goes on to say:

“What has not been sufficiently highlighted is the psychological price people have paid.”

In closing, I would like to read the last two verses of a poem that a constituent who has suffered mental illness sent me:

“I know we’ve had this conversation before

But this time I’m throwing you out of the door

I tried in the past but I didn’t want to be rude

For after all you’ve done me such good.

I appreciate that you’ve been my friend

But now I’m afraid it has to end

I cannot keep you by my side

There were times you almost let me die.”