Oral Answers to Questions

Cat Smith Excerpts

Tuesday 10th March 2020 Commons Chamber

[Edward Argar]

My hon. Friend is right to highlight that his constituency has the highest average age in this country. As an assiduous reader of the Eastern Daily Press I recently saw the story outlining the trust’s plans for a UTC. I look forward to seeing those proposals develop further. The key to delivering them, or their making progress, will be partnership. I look forward to the hospital trust, my hon. Friend and the CCG working in partnership to deliver an outcome.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

19. What recent assessment he has made of trends in life expectancy.

[The Secretary of State for Health and Social Care (Matt Hancock)]

Life expectancy at birth is the highest it has ever been. Figures this week showed that last year mortality was the lowest since 2001, but we are not complacent. Already we have made clear our bold commitment to level up left-behind areas.

[Cat Smith]

The truth is that if you live in poverty you will get ill quicker and die sooner. For my constituents in Pharos ward in Fleetwood, life expectancy is 10 years shorter than just five miles down the road in Carleton, and following the report that came out last week we know that life expectancy has stalled and for the poorest women it is now declining. What kind of damning verdict does the Secretary of State think that is on his Government’s 10 years of Tory cuts and austerity?

[Matt Hancock]

I agree with most of what the hon. Member said and the starting point in particular—that the gaps in healthy life expectancy are far too big. She will have heard me articulate from this Dispatch Box how important it is that we close those gaps. The news out this week of lower mortality in 2019 was good news that she ought to welcome, but it certainly does not mean that the campaign to close the gap in healthy life expectancy is over. There is far more to come.

Wuhan Coronavirus

Cat Smith Excerpts

Monday 3rd February 2020 Commons Chamber

[Matt Hancock]

The process of contacting those who have been in contact with the two people who have so far tested positive for the virus is rapid and ongoing—it is a matter of days to complete and get in contact with all those people. This is an ongoing operation and it will be concluded soon. I will let him, the House and the hon. Member for York Central (Rachael Maskell) know as soon as we can make that information public.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

I put on record my thanks to all the officials who supported my 81-year-old constituent Veronica Theobald to make the journey from Wuhan to the Wirral. What lessons have been learned about the repatriation of older citizens or citizens with additional needs, who might be more vulnerable?

[Matt Hancock]

We have worked hard to try to make sure that the repatriation takes into account other health problems that some people had, and to make sure, frankly, that the accommodation takes that into account—we have tried our level best to make the accommodation as comfortable as possible. I have read some of the stories in the newspapers about the lengths that NHS staff have gone to. The Minister responsible went to Arrowe Park to make sure that we are doing everything we can to make the facilities not only safe—of course, both to the public and those who are quarantined there—but comfortable for the two weeks.

Blackpool Teaching Hospitals NHS Foundation Trust

Cat Smith Excerpts

Thursday 24th October 2019 Commons Chamber

[Cat Smith (Lancaster and Fleetwood) (Lab)]

I congratulate my hon. Friend on securing yet another Adjournment debate on the Blackpool Teaching Hospitals NHS Foundation Trust. It is, indeed, a sorry state of affairs when we find ourselves debating the trust once again. He makes important points about the staff, who work incredibly hard. Does he share my concern that the CQC report said that the staff did not always feel respected, supported or valued, and were concerned about the culture within Blackpool Victoria Hospital?

[Gordon Marsden]

I share those concerns, and I will show how they are inextricably linked to some of the shenanigans in the confirmation of the chief executive. It is all the more reason why staff might share the concerns and sense of grievance to which I will refer.

In the autumn and winter of last year and into this spring, as the trust’s chair settled into his new position, the problems of cuts, waiting times and cancelled operations, which still leave the trust with some of the worst mortality rates and waiting times in England, continued. A snap visit by the CQC in January found patients waiting on the floor of Blackpool Victoria Hospital, because of a lack of space, and triage delays of more than three hours. As Blackpool’s The Gazette said when the report finally came out, the CQC was demanding that

“bosses must improve the standards of care and staffing…in the emergency department”.

Unfortunately, by this time, the trust had a further shadow hanging over it, with a police probe into issues of alleged poisoning in the stroke unit. That situation remains unresolved and I do not intend to talk about it further. The then chief executive, Wendy Swift, had left fairly unexpectedly in April, and the chair was at pains to tell The Gazette that her departure was

“in no way related to the trust’s performance.”

But he struck a very different tone last month when he told governors that the trust had

“needed a leader with gravitas and experience who could lead a different type of engagement with our staff.”

That person was Kevin McGee, who was appointed as the interim temporary chief executive for the six months to 31 October. Naturally, when I heard of that, in May, I spoke to the chairman, who assured me that there would be a full and proper process for appointing a permanent chief executive in due course. I said in a subsequent letter to him, on 10 June, that it would be helpful to confirm when the process would begin, with details of the period between stakeholders being advised and of the closing period, and that this had been one of the issues in respect of his appointment as chair. I heard no more until 20 June, when the trust’s secretary sent me a note, which said that the post had been advertised on 9 June and the shortlisting process would take place at the remuneration committee on 27 June. I want to emphasise that that was an even more rushed deadline that the one that the Minister’s predecessor had criticised for the chairman’s own appointment. In effect, it blocked MP stakeholders from having any ability to inform other potentially suitable applicants.

I began to be concerned, but what I did not then know was that the timeline described in the note to governors on 16 September to rubber stamp Mr McGee’s appointment as the permanent chief executive without due process had been given the following rationale:

“On 27th June, the Remuneration Committee reviewed the shortlist provided by Odgers”—

the recruiters—

“and determined that the candidates presented did not demonstrate either the experience or the leadership…required for the post…The Non-Executive Directors and myself did not believe that re-advertising the post would result in a stronger field of applicants and this had been discussed with, and agreed by, the Regional Director of NHS Improvement, after a range of discussions with experienced Chief Executives across the sector.”

How cosy! It was very cosy, and I think that to any impartial outside observer it would look like a complete stitch-up by the great and good of the region. The only communication I had received from the trust between June and 16 September was a staff bulletin from Pearse Butler, in which he had confirmed the cancellation of interviews and said

“we will now take a few weeks to consider our options”.

In the meantime, my attention had been drawn to an article published on 9 August in the Health Service Journal headed “Chief executive makes bid to lead second trust”. The journalist, Lawrence Dunhill, had interviewed Mr McGee about creating chain models and shared leadership. Mr McGee was admirably concise about what he thought—they were a jolly good thing. He told Mr Dunhill:

“Take personalities out of it, just the ability to work together in a different way”.

When asked whether he wanted to lead both trusts permanently, he said:

“If we can look at working in a different way across Lancashire then it would be a really good thing to do and I’d be really interested in doing that.”

The article stated:

“As reported last month, former Salford Royal chief executive Sir David Dalton…has been brought in to help trusts in Lancashire look at options for closer collaboration.”

Incidentally, this was the same Sir David Dalton who had been the independent assessor for the process of Pearse Butler’s own appointment as chair, which the previous Minister referred to last year.

I want to make it clear that I am not making any judgment—certainly not yet—on whether Mr McGee will be a good, bad or indifferent chief executive. He comes with some reputation, but as he has not met me since his appointment in May, I cannot say more. What is very clear is that for the second part of this exercise, having got Mr McGee as an interim chief executive of Blackpool Teaching Hospitals NHS Foundation Trust, in addition to his existing position as chief executive of East Lancashire Hospitals NHS Trust, there was a clear determination on the part of the chair at least to push through his confirmation without any attempt to reopen the selection process. We know that because of the answer to a parliamentary question that I received from the Minister on 8 October. I asked in what capacity NHS Improvement had given advice on discussing the possibility of mergers, and the reply said:

“The Chair at Blackpool Teaching Hospitals NHS Foundation Trust and the Chair at East Lancashire Hospitals NHS Trust sought the views of NHS England and NHS Improvement on the possibility of merging services and provision between the two Trusts.”

When the chairman had secured the agreement of the governors at the meeting to his proposal for Mr McGee, he finally decided to tell certainly me, and I think my parliamentary neighbour, the hon. Member for Blackpool North and Cleveleys (Paul Maynard), of his news. This consisted of a rushed phone call to me, I think out in the countryside, just before he was about to go on holiday to Japan. I made it clear to him that I was surprised that he seemed to have learned nothing from the failings of process and transparency in his own appointment, that he was now preparing to foist a merger between the two trusts, that this was a major step and that there should be utmost clarity and transparency in the process. When I asked him why he had not taken that option in respect of Mr McGee, he dodged the question about putting him automatically on the shortlist and said that it would be a great move. When I said to him that it was effectively a merger, it said that it was not, saying that it was an alignment and that no decisions had been made about any merger. We know from the answer to the parliamentary question that that was incorrect. Perhaps the House will not be surprised that in the article in The Gazette entitled “More controversy at Blackpool Victoria Hospital”, I said that the process had been

“at best ambiguous and at worst evasive”

in respect of the merger and that we needed confirmation of what was proposed. I have no doubt that the chair will continue to try to muddy the waters but, to continue the analogy, if it walks like a duck and quacks like a duck, it is a duck.

We now have clarity from the answer to a second parliamentary question that I received from the Minister that Mr McGee will receive a single salary, agreed by both remuneration committees, although the trust still refuses to tell us what it will be. I said to The Gazette that the situation “beggars belief” after last year’s debate, and I still believe it does. It appears I am not the only one. The smooth and slippery stakeholder brief that was put out by way of formal amendment for the trust talks of “strategies of collaboration” and extensive discussions with, among others, the governors at Blackpool foundation trust. I am reliably informed that that is not the case. At least one governor has said that they were called on 16 September simply to ratify McGee’s appointment and that nothing was said about the implications of a merger. I gather that others are asking for more clarification. The Gazette, which was initially fobbed off about the truth and timing of the appointment, told us the same story. It seems that a number of other non-executive directors have also been confirmed without further press or selection.

It has to be said that this is not the first time that Mr Butler has attracted controversy with governors. When he was chair of the Morecambe Bay trust and outsourced Barrow hospital’s out-patient services, the media reported governors as saying, “I do not believe you got any influence on this structure. You drove the decision and due process was not done.” Governors were not informed of what was happening until July. In this case, it was not only MPs who were not consulted, as is confirmed by the Minister’s answer to my parliamentary question, and nor was the chair of the clinical commissioning group, or the CCG itself. Sadly, in the “not good enough” CQC report on the June inspection that came out just last week, this is amply and damningly exposed.

Health Infrastructure Plan

Cat Smith Excerpts

Monday 30th September 2019 Commons Chamber

[Edward Argar]

My hon. Friend is absolutely right to highlight the need for access to facilities in his county, given its geography. I have been clear today, the Secretary of State has been clear and the Prime Minister has been clear in our commitment to the list of schemes that we have said will get the HIP 2 funding. I know that officials in my hon. Friend’s trust will be looking forward to working with him to develop their proposals.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

I am pleased that my persistent and passionate campaigning for the University Hospitals of Morecambe Bay NHS Foundation Trust must have been heard by those on the Government Benches; I am sure it has nothing to do with the two marginal constituencies of Morecambe and Lunesdale, and Barrow and Furness, which fall into the trust’s footprint.

When constituents get in touch with me frustrated with NHS wait times, it is invariably about the wait for mental health services, and some of the most difficult conversations I have had to have as a constituency MP have been with parents who have lost children to suicide or eating disorders, so why is the Government’s announcement today so silent on mental health issues, particularly regarding CAMHS?

[Edward Argar]

I am grateful to the hon. Lady, who I know has campaigned on this. My hon. Friend the Member for Morecambe and Lunesdale (David Morris) has taken a real lead in fighting for improvements and investment in this area, so I pay tribute to him as well. The hon. Lady raises a point that other hon. Members have rightly raised about mental health services, particularly for children. She will know that before I was a Minister I campaigned in this House on eating disorder support services with the charity Beat. She is absolutely right to highlight the importance of early and appropriate intervention in those areas. That is why improving mental health is at the heart of our agenda and why, alongside these announcements, since July 2017 we have, for example, announced investments of over £400 million in improving mental health services. Yesterday’s and today’s announcements are another part of our overall strategic vision for investing in and improving our NHS, and they should be read in the round with all the other announcements.

Learning Disabilities Mortality Review

Cat Smith Excerpts

Wednesday 15th May 2019 Commons Chamber

[Cat Smith (Lancaster and Fleetwood) (Lab)]

Vaccinations are one of the best ways to protect health and reduce mortality, and I was pleased that the Government pledged to increase the uptake among people with learning disabilities. Will the Minister update the House as to what progress she is making with that Government pledge?

[Caroline Dinenage]

The hon. Lady is right that vaccinations are very important. We have introduced the annual health check for people with learning disabilities because it is an opportunity for them to have a one to one with their GP to check that all things such as vaccinations are up to date, but also to see whether there are any other long-term health issues that have not yet been spotted. I speak about this from an entirely selfish point of view because a dear friend of mine—my self-appointed best friend, who was one of my constituents—very sadly died last year from a form of cancer that would have been curable had her case been picked up earlier. That is why health checks for people with learning disabilities are vital.

Valproate Pregnancy Prevention Programme

Cat Smith Excerpts

Thursday 21st March 2019 Commons Chamber

[Cat Smith (Lancaster and Fleetwood) (Lab)]

I am raising the issue of the valproate pregnancy prevention programme today as a result of tireless campaigning by my constituent Janet Williams. Along with her friend Emma Murphy, Janet, who is here today, launched the Independent Fetal Anti-Convulsant Trust, or INFACT, in November 2012, and they have almost single-handedly kept the issue of disabilities caused by anticonvulsant medication on the political agenda since then. Despite both living in the north-west of England, they regularly travel to and from London to demand action from drug companies, politicians and civil servants, and they simply will not take no for an answer. Mr Deputy-Speaker, you may know that when a woman from Lancashire gets her teeth into something, she is not going to let go. The campaign for justice and to ensure that no families are similarly affected continues, but the fact that progress has been made in recent years is largely down to Janet and Emma.

It may help if I first provide some background to sodium valproate. The drug, a trade name of which is Epilim, is manufactured by Sanofi, among others, and has been prescribed in the UK since the 1970s. Despite its effectiveness for treating certain types of seizures, research has demonstrated that it carries a higher level of risk to the exposed foetus. Around 27,000 women are currently taking sodium valproate in England and Wales. Scientific data demonstrates that around 10% of children exposed to sodium valproate will be born with a major congenital malformation and their IQ is likely to be lower, with 29% requiring additional educational support and 6% being diagnosed with significant social communication difficulties such as autism.

Estimates of the number of children still being affected by this drug vary. In February 2016, the right hon. Member for North Norfolk (Norman Lamb), the then Minister for Life Sciences, stated that 336 children are exposed to valproate every year. Figures from the Clinical Practice Research Datalink suggest that the figure could in fact be 176. However, even the lower number would imply that 7,000 children have been harmed by valproate since it first came on the market in 1973, with a further 28 a month still exposed to it.

Sodium valproate received its licence to be prescribed in the UK in 1973. The first case reporting the effects of sodium valproate during pregnancy appeared in 1981. By 1987, the damages caused by the drug in pregnancy were recognised throughout the medical professional, being given the title of foetal valproate syndrome in 1995. National Archive documents show that the Committee on Safety of Medicines was aware of the dangers of valproate when taken in pregnancy at the time of licensing, but it decided to inform medical professionals while keeping the women taking the medication in the dark. The patient information leaflet for sodium valproate was only changed to highlight the risks during pregnancy in 2000, and the information was sparse even then.

Women and children have been let down by the pharmaceutical industry and successive Governments over many decades, and I hope that they will one day be compensated for the failures that were allowed to occur. However, I want to focus the remainder of my time on addressing how we can ensure that all women of childbearing age taking sodium valproate today are aware of the risks it poses and are able to make informed decisions about their future.

The valproate toolkit was introduced in March 2016 and gave healthcare professionals the opportunity to inform patients voluntarily of the dangers of taking valproate in pregnancy. Sadly, the toolkit failed to achieve its aims. It took the form of a patient booklet, pharmacy cards that were received on collection of a valproate prescription, a healthcare professional booklet and a checklist for specialists.

INFACT surveyed patients and pharmacists, and the two surveys found that around 85% of patients were not receiving the patient booklet and 90% were not receiving the pharmacy card. In a letter from Sanofi on 27 May 2016, INFACT was informed that the patient booklets were not given to GPs, as had previously been indicated by Ministers, but instead had to be downloaded by GPs from the Sanofi website. In designing the pregnancy prevention programme, what lessons have been learned from the failure of the valproate toolkit?

The pregnancy prevention programme, as a mandatory action, was introduced in April 2018 following the failure of the valproate toolkit, which gave healthcare professionals the opportunity to discuss the dangers of valproate with their patients. It was stated:

“To protect public health, the Medicines and Healthcare products Regulatory Agency (MHRA) has changed the licence for valproate medicines (Epilim, Depakote and generic brands). Valproate must no longer be prescribed to women or girls of childbearing potential unless they are on the pregnancy prevention programme (PPP)… Healthcare professionals who seek to prescribe valproate to their female patients must make sure they are enrolled in the PPP. This includes the completion of a signed risk acknowledgement form when their treatment is reviewed by a specialist, at least annually.”

As with the valproate toolkit, the PPP included a booklet to enable patients to understand the risks and a small, credit card-sized information card for pharmacists to provide on dispensing the drug. However, the PPP was strengthened by the addition of an “acknowledgment of risk” form, which was to be signed by the doctor and the patient on the communicating of the risks. For the pharmacist, there was the addition of ensuring that every dispensed prescription of valproate included the patient information leaflet, the credit card-sized information and warning stickers on the white chemist boxes, all of which had been supplied by Sanofi on the instruction of the MHRA.

To get to this stage, numerous meetings had been held over a five-year period to discuss how the information would be designed to be most instructive both to the healthcare professional and the patient, working through the valproate stakeholder network meetings and the expert working group meetings at the MHRA. Following the failure of the first toolkit, patient groups are understandably on guard to ensure they are aware of problems. Worryingly, over a 10-month period INFACT found that the majority of women were not receiving the new pregnancy prevention programme from their doctor or pharmacist.

From December to February, INFACT collected information through a survey of 74 women, which showed: 80% received the white chemist boxes; 40% never received the patient information leaflet, and 41% received it only some of the time; and 78% had never received the small credit card-sized information, with the majority of them never having had warning stickers on their white chemist boxes. During appointments with healthcare professionals, approximately 40% had never discussed the PPP with their doctor, more than 60% had never been asked to sign the “acknowledgment of risk” form, and 73% had never had alternative medication suggested to them.

Those figures indicate that women continue to be failed by their healthcare professionals and pharmacists on the PPP, even though its legislative status has been recognised, with instructions given by the General Pharmaceutical Council to pharmacists and by the MHRA to healthcare professionals.

In the autumn of 2018 proof of the failure, in the form of videos and photographs, was passed to the MHRA and, in turn, to the enforcement agency for investigation, yet we are still awaiting a response to those investigations. The consequences of these findings are deeply troubling. They indicate that women and girls aged between 15 and 45 may still not be being given an informed choice about their medication. They are not being given any information about alternative medications that may be suitable for them, and they are not being asked to sign the “acknowledgement of risk” form by their GP or specialist. On collection of their valproate prescription, they are not receiving any instruction from the pharmacist, nor are they receiving the small credit card-sized information, the patient information leaflet or any warning stickers on the white boxes.

It is worth reiterating that approximately 27,000 women of child-bearing potential are still prescribed sodium valproate every year; that 70% of them have not been offered a change in their medication since April 2018 and the introduction of the PPP; and that approximately 19,000 women are therefore still at risk of becoming pregnant while being prescribed valproate with no instructions from either their doctor or their pharmacist.

In addition to the risks outlined earlier, INFACT has been made aware that folic acid does not have the desired affect when taking sodium valproate and that the dangers to the foetus are no longer dose-related, making it a possibility that all those exposed to valproate in the womb will be affected by it. I would therefore like to ask the Minister to clarify: what assessments have been done to ensure women prescribed valproate receive the PPP and are offered an alternative medication where possible? What assessments are taking place to calculate how many healthcare professionals, including GPs in surgeries and those in pharmacies, complete the PPP with their valproate patients? And what the enforcement agency intends to do to ensure those failing to comply with the PPP have penalties imposed to ensure they do not continue to do so? Finally, I would like to request that the Minister meet me and representatives from INFACT to discuss how we can make sure the PPP works for women, allowing them to make informed choices about their own health and the health of potential future children.

Valproate and Foetal Anticonvulsant Syndrome

Cat Smith Excerpts

Thursday 19th October 2017 Commons Chamber

[Norman Lamb]

That is a profound comment to make and it reflects a changing attitude and culture; it is thankfully now less paternalistic than it was. However, elements of it remain and we need to keep fighting against that. The hon. Lady makes a good point: this relates to other products, too.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

rose—

[Norman Lamb]

I will take this intervention and then I ought to make progress.

[Cat Smith]

Is the right hon. Gentleman aware of research done by the Independent Fetal Anti Convulsant Trust—In-FACT—which found that up to 400 babies affected by valproate have been born since the toolkit was launched in February 2016?

[Norman Lamb]

I thank the hon. Lady for the intervention. I am aware of that figure and again it is shocking. It makes the point that this is a continuing scandal, not something from the dim and distant past.

Since the 1970s, more information has emerged bit by bit. In 2000, the information given to patients was changed to refer to the warning, but it took until then for anything to emerge. In 2005, Sanofi made an addition to this, and an interesting question is whether it downplayed the risk. That is one point that raises the question whether some sort of panel investigation needs to take place. In 2005, Sanofi said on its warnings to patients:

“Some babies born to mothers who took Epilim during pregnancy may develop less quickly than normal and may require additional educational support”.

That is putting it at its mildest, because the implications were far more serious. The question is, did it know then? These things need to be investigated further.

It is important to state what the risks are. Among the general population there is a 2% to 3% risk of foetal abnormality. If valproate is taken during pregnancy, that risk rises to 11%, and possible defects include spina bifida; malformations of the face, including cleft palate; malformations of the skull, limbs and organs, including the heart; and respiratory issues. It is incredibly important not to disregard the fact that when people take valproate during pregnancy there is also a 30% to 40% risk of developmental problems, including life-changing issues such as poor speech and language skills, delayed walking and talking, behavioural problems, interaction and communication issues, low intellectual abilities, memory problems, noise sensitivity, sensory issues, attention deficit hyperactivity disorder and autism spectrum disorders. The consequences are incalculable. It is estimated that 20,000 babies have been affected since the 1970s. It is also important to remember the profound impact on the mothers themselves, who too often have been treated as if they are to blame for the problems their children face and who then face years of guilt. That is a really shameful aspect of all this.

I have some case studies. Becky Parish, a mother from my own county, Norfolk, says:

“Logan is 7 and was born with a 7 mm unilateral cleft lip and palate…which the geneticist confirmed was due to Fetal Valproate Syndrome…He also has grommets and struggled with glue ear and bronchitis as a baby”.

He has needed “constant speech therapy” and suffers ear infections.

Becky describes how Logan

“has all facial features of FVS”

and is short in height and low in weight for his age. He has

“severe aggressional and destructive behaviours, including violence against others and self-injurious behaviours”

and so it goes on. This is really significant. There is sometimes a danger when we talk in general or abstract terms, but when we hear the stories of the affected families, we realise just how awful it is.

Becky says “social”—social services—“blamed me for it”. Her assertion is that in her case social services thought that the problems related to a detachment disorder, with the implication being that the mother was in some way to blame. She says:

“Social blamed me for it and so did the school—and now I feel more guilt due to it being FVS. Because no matter how much someone says I didn’t know and it wasn’t my fault, the guilt never goes away. And sadly it never will.”

That is really shocking.

Becky decided not to continue with valproate when she became pregnant with her youngest child, who is now five. She says that it was not a difficult decision, because in her view her child’s health was “far more important” than her own seizures, but that must have been a terribly difficult judgment for her to make. Nevertheless, she stopped straight away and was not put on any alternative treatment, despite conflicting messages from health professionals. Her specialist nurse told her that—wait for it—she was being selfish, and made her upset at her 12-week scan. However, her neurologist said that coming off the drug was the best thing she ever did. So she got two completely conflicting messages.

Carolyn Allen in Southampton talks about how her son requires support for a number of the effects of the condition, including deafness in his left ear, noise sensitivity, and speech and language delay. She says:

“He has been referred to portage, speech therapy, occupational therapy, ophthalmic, hearing clinic, physiotherapy, community paediatricians and has already had one operation to release his tongue tie.”

Just imagine the massive impact of this condition on that family.

Paula Hartshorn, a mother from Leeds, says:

“The powers-that-be need to think about the devastating impact this has on families, and how these families have to just cope and instantly know how to deal with all these complex medical issue. We have been left to give up on our jobs, careers, social interactions, and everything that goes with a well-rounded life. There are no breaks for us.”

The stories are heartbreaking.

Kazzy Southam from Blackpool tells a story of not finding out about the condition until her daughter was nearly 20. Her voyage of discovery began when she met Janet and Emma in 2014. This was after her daughter had been diagnosed with learning disabilities, dyspraxia, and social anxiety disorder. She had to fight to get a geneticist to investigate and give advice. Eventually, it was confirmed that her daughter had foetal valproate syndrome. It was a shocking fight for her to get justice, and she should not have had to go through that. She says:

“To me, she is an angel and I wouldn’t change her for the world. She said to me not long ago: I wouldn’t want to be ‘normal’—I like my mad head. But it hurts me to say, she doesn’t and won’t know any different—all down to the pills I took for my seizures.”

I ask Members to imagine living with that throughout their life. The Minister really needs to reflect on this. It seems to me that the Government have an obligation to do good by these people and not just to say that they must resort to the local authority or the clinical commissioning group for whatever might be available in their locality. There is a moral duty here and we must accept it just as we did with thalidomide.

I became aware of this scandal when I was a Minister and met the campaigners in September 2013. I was horrified by what I heard, having known nothing about the condition until then. I asked the Medicines and Healthcare Products Regulatory Agency, which attended the meeting, for an urgent review of what was being done to stop more and more mothers giving birth without knowing of the risks. In October that year, the MHRA asked the European Medicines Agency to undertake a full review. That review reached the conclusion—it was very little different from what the product licence said back in 1974—that the product should be used only if all other drugs are ineffective or are not tolerated. It also advocated a strengthened warning to ensure that all mothers were aware of the issue.

In January 2015, the MHRA issued new information with stronger warnings, education materials, patient information leaflets and so on. Eventually, in February 2016, the toolkit was issued: I have it here. It may not look like a toolkit, but it is. It is of value, because it gives information to clinicians and patients about the risks involved. Again, the scandal is that the information has not been communicated to very many of the affected women.

In September this year, a survey carried out by the UK’s three leading epilepsy charities—Epilepsy Society, Epilepsy Action and Young Epilepsy—found that the warnings were not getting through. Some 68% of women of childbearing age had not had any of the materials released as part of the valproate toolkit. That is not acceptable.

--- Later in debate ---

[Cat Smith (Lancaster and Fleetwood) (Lab)]

Thank you, Mr Deputy Speaker. It is a pleasure to be able to be squeezed into the end of this debate, and I shall be brief. For me, this debate started within days of being elected as an MP in 2015, when my constituent Janet Williams got in touch to ask whether she could meet me. When I was first elected, I imagined that I would meet most of my constituents back up in Lancashire, but Janet was keen to get a meeting in quickly and she chased me down to Westminster. I met her in Portcullis House, along with Emma Murphy. Both of them have been mentioned a lot in this debate, and I pay tribute to the work they do on this important issue.

When I met Janet, my jaw hit the floor, as I could not believe that in this day and age women were still being prescribed drugs that were harming their unborn babies and they were not being told about it. But it was not just that they were not being told about it; a cover-up was taking place. I find this to be a national scandal, and I do not use those words lightly. I have met Janet’s sons, Philip and Lee—they are both constituents—and for them this is a life sentence. Janet should not feel guilty for taking the drugs that her doctors told her to take during her pregnancies, but her sons will continue to need care throughout their lives; they are young men in their 20s and so that is a huge social care need.

This scandal started in the 1970s but, as I have said, it continues today, with women in this country still being prescribed this drug. It is a great drug—it is a very effective anti-epileptic-fit drug and it is good at treating bipolar conditions and migraines—but we need women to have knowledge about it. We need to share knowledge with women so that they can make decisions about their own bodies and own health in pregnancy. So I urge the Minister to respond to the call to publish prescribing data so that we know whether certain areas of the country are overprescribing this drug to women of childbearing age, as colleagues have mentioned. I also add my voice to the call for a public inquiry into this national scandal, and for an adequate compensation package for all those many people and their families who are affected by this national scandal.

Oral Answers to Questions

Cat Smith Excerpts

Tuesday 10th May 2016 Commons Chamber

[Mr Hunt]

May I reassure my hon. Friend that I am very aware of this issue, and I have had a number of meetings with hon. Members to discuss it? Patient safety has to be the utmost priority. We are working with the local trust, and we have been given an assurance that neighbouring hospitals will be able to absorb any extra activity, and that it is working hard to try to reopen the A&E department.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

The temporary closure of A&E services at Chorley hospital has had a knock-on effect on hospitals across Lancashire, and anecdotally I hear of many more people turning up at Preston Royal. What reassurances can the right hon. Gentleman give my constituents and residents across Lancashire that he is doing everything he can to make sure that the staffing issues at Chorley are fixed and that Chorley A&E is open again?

[Mr Hunt]

I can reassure the hon. Lady that we have been monitoring the situation closely and have provided extra capacity at the Royal Preston hospital. Her own Royal Lancaster infirmary has recently come out of special measures and done a really good job in turning round the quality of care after protracted difficulties. We continue to monitor the situation, and patient safety is our No. 1 priority.

World Autism Awareness Week

Cat Smith Excerpts

Thursday 28th April 2016 Commons Chamber

[Cat Smith (Lancaster and Fleetwood) (Lab)]

I wish to touch on three areas today: diagnosis waiting times, employment and public awareness.

We have already heard this afternoon that the time that people have to wait for a diagnosis is unacceptable. That view is certainly reflected in the correspondence that I have received from my constituents on this matter. Janeen Shears from Preesall had to wait almost five years for her son’s diagnosis. She said:

“I was told my son was very complex and while professionals recognised many traits he didn’t ‘fit neatly into one diagnosis box’.”

That is because every autistic person is unique and different. Another constituent, Saffron Warde-Jones, who lives in Lancaster, said this to me:

“I have autism and was only diagnosed aged 44 after a lifetime of struggling.”

Diagnosis opens up a support network, so will the Minister ensure that NHS England’s new autism care pathway includes and reduces diagnosis waiting times?

I have been privileged to work very closely with the local National Autistic Society group, which is chaired by Gill Mann. It was clear early on that one of the big issues facing the group was access to employment, which was reflected in the fact that only 15% of adults on the spectrum are in full-time paid work. That is why, locally, I am working with the NAS to put on a jobs fair to implore employers to take on autistic people. I am also looking forward to the Government publishing their White Paper on disability and employment, which will

“set out reforms to improve support for people with health conditions and disabilities, including exploring the roles of employers to further reduce the disability employment gap and promote integration across health and employment.”

Can the Minister give us any indication of when to expect that White Paper, as I am aware that the date has been moving around?

We know anecdotally that autistic people feel that the current employment support services do not meet their needs, but the current system does not record their participation in or their outcomes from the Work programme. Going forward, I want to see more robust data on autistic people to understand how provision is working for them. Furthermore, what are we doing to support young people with autism in making the transition from education to the world of work? My constituent, Brian Simpson, said that his son gets a lot of support from school, but he is really worried about what will happen when his son finishes his education.

The Government have committed to replacing the current Work programme and Work Choice with a new Work and Health Programme for people with health conditions and disabilities. That presents us with an important opportunity to do more to support autistic people to find and to stay in work.

In relation to the new Work and Health Programme, can the Minister tell me on what date the tender document will be published, and from what date the programme will be operational? Will the specification for the programme require that the conditions of the claimants, including autism, be recorded by both providers and Jobcentre Plus, and what discussions has he had about the conditions that will be recorded?

On awareness funding, my constituent Janeen told me that people often think that people with autism have a “genius talent”. She said that they do not really understand the “meltdown” in someone’s behaviour. It is just used to describe any kind of naughty behaviour. The Government should take a lead in tackling this lack of understanding.

Half of all people on the autistic spectrum tell the NAS that they do not go out because they are worried about people’s reactions to their autism. A quarter of them have been asked to leave a public place because of the behaviour associated with their autism. How do parents cope with that? They respond by not taking their children to places where they do not feel they will be accepted, which makes their children’s world a little bit small. They cannot enjoy the public space that we all take for granted—the parks, the museums and the shopping centres.

The NAS video, which has had 50 million views online, has a fantastic way of describing just how difficult it is for parents of an autistic child. The Government can do a lot more. Around 800,000 people in this country are affected by dementia, and the Government have shown great bravery in trying to change public attitudes by spending more than £2 million on awareness campaigns. The same work needs to be done for people on the autistic spectrum. I am aware of the Government’s £340,000 programme in this area, and I am looking forward to hearing the Minister’s remarks, telling us more about the scope of this project. With programmes such as “The A Word” on the BBC and the books and articles that are out there, now is the time for the Government to turn this awareness of autism into a true understanding.

Junior Doctors’ Contracts

Cat Smith Excerpts

Wednesday 28th October 2015 Commons Chamber

[Mary Creagh (Wakefield) (Lab)]

It is a pleasure to follow the hon. Member for Blackpool North and Cleveleys (Paul Maynard).

I welcome my hon. Friend the Member for Lewisham East (Heidi Alexander), the shadow Secretary of State for Health, to her new position.

I have three puncture marks on my left hand. They come from 2001 when I was admitted to accident and emergency suffering a life-threatening event, an ectopic pregnancy. It took four attempts before a junior doctor successfully inserted a line into my hand. He apologised to me and said, “I’m sorry, I’ve just worked for 24 hours without a break and I just can’t see straight.” I am grateful to that doctor, both for his compassion and for his honesty, and I will always be grateful to the junior doctor who wheeled me up to theatre at midnight and operated on me, saving my life.

Such overwork is what led the Labour Government to change the junior doctors contract. Under that contract, employers face financial penalties if junior doctors work longer than contracted. This Government want to remove these vital safeguards in the new contract and, instead, ask employers to follow the working time regulations. But in medicine, mistakes cost lives. The safeguards need to be much stronger than generic working time regulations, especially as junior doctors work a number of extra hours over and above what they are contracted to work, as we have already heard.

I have further concerns about the proposed changes. Currently, Mid Yorkshire Hospitals NHS Trust, which manages Pinderfields, Wakefield’s local hospital, carries vacancies in all specialties, like most other large trusts. Vacancies are particularly hard to fill in A&E, obstetrics, paediatrics and medicine.

Junior doctors provide all types of patient care—emergency care to mothers in labour, care for new born babies, specialist elderly medicine, cancer care and surgery. We have heard that almost 3,500 doctors applied for paperwork to leave the UK and work abroad in the first 10 days after the Government announced their threat to impose the new contract.

I have concerns that the contract will discourage junior doctors from gaining clinical experience and contributing to medical research. Currently, pay progression is an annual increment, irrespective of their stage of training. NHS employers want to change that. That will impact on doctors who work part time or who are taking maternity leave, because they will not get an annual increment at their stage of training, so will not get pay progression.

[Cat Smith (Lancaster and Fleetwood) (Lab)]

Will my hon. Friend give way?

[Mary Creagh]

I will not give way.

The Prime Minister said this morning that he was a feminist, but women junior doctors know that his warm words hide the cold reality of direct discrimination. Will the Minister tell us whether an equality impact assessment has been done on the proposals?

Finally, we have discussed the weekend effect, but Fiona Godlee, the editor of the British Medical Journal, has written to the Secretary of State criticising him for misrepresenting the research. He must think again and both sides must negotiate.