Cystic Fibrosis Drugs: Orkambi

Teresa Pearce Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

The hon. Lady is right. The fact that people have to resort to such things is ridiculous given that we have a comprehensive health system. It is about time Vertex recognised that there is plenty of time for it to make a reasonable profit on its drugs portfolio. It is not helping the situation. There are a number of people from the Cystic Fibrosis Trust in the Public Gallery, but unfortunately, as the hon. Member for Bury North (James Frith) said, many sufferers cannot be here because of the danger of cross-infection. They are hopefully watching the debate on television or on their computers.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

The hon. Gentleman is being extremely generous in giving way. On the issue of shareholdings and profit, when I was doing research for this debate, I came across something in the Wall Street news that told me that Vertex gives a higher than average return on investment. Most companies that operate in this area give a return on investment to shareholders of 20%; last year, Vertex gave 45%.

[Paul Scully]

I am grateful to the hon. Lady for pointing that out.

Autism

Teresa Pearce Excerpts

Thursday 29th March 2018 Commons Chamber

[Dame Cheryl Gillan]

My right hon. Friend, who chairs the Education Committee with distinction, is absolutely right. That is why I am so pleased that this year, for the first time, the Government are putting a compulsory autism module into initial teacher training. That is significant, and I hope that my right hon. Friend’s Committee might look into that provision.

The inquiry of my hon. Friends the Members for Bexhill and Battle and for Lewes also found that four in 10 families were initially turned away when asking for the extra help that their child needs. To address these challenges, we have recommended that the Department for Education develops an autism strategy. That call has been enthusiastically taken up by the National Autistic Society and Ambitious about Autism, which launched the Held Back campaign to support the report’s recommendations.

More than 20,000 people, including 70 Members of this House and the House of Lords, have signed an open letter to the Secretary of State for Education calling for the report’s recommendations to be implemented. It is really important that Lord Agnew, the Under-Secretary of State for the school system, comes forward with the Department’s response, as it has confirmed that it will respond to the inquiry. It will be good to hear what it is doing to make improvements in this area.

I turn to the autism employment gap, which is a major problem.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

I thank the right hon. Lady for the work that she does on the APPG, which is much needed and welcomed. I agreed with what she said about children in school, and I think that everybody here knows of such cases. My constituent, Lucy, has a bright seven-year-old son who is in year 4 but is working at year 1 level because he has not had his diagnosis. That an absolute disgrace for the child, who is missing out on his education, but Lucy also wrote to me to say, “I am exhausted”. She is fighting with all her energy, but says,

“I still have fight in me, but the whole family is exhausted”

because they feel that there is a barrier at every step.

 Orkambi and Cystic Fibrosis

Teresa Pearce Excerpts

Monday 19th March 2018 Westminster Hall

[Mr Iain Duncan Smith (Chingford and Woodford Green) (Con)]

I am grateful to you, Mr Evans, for your chairmanship today. As you suggested, I will be brief.

So much has been said already about this drug that I want to make only two points about it at the end of my speech. I congratulate my hon. Friend the Member for Sutton and Cheam (Paul Scully) and hon. Members from both sides of the House on having been responsible for the assistance and support that has been provided—both the roundtable that took place earlier, which I was not able to attend, and the e-petition—and on representing the sufferers and their families so well. I congratulate them, and I am pleased and grateful that they have managed to secure this debate.

I am really here because one of my constituents is standing outside hoping that there may be some resolution as a result of this for her daughter, who suffers from cystic fibrosis. I have known the family and the daughter for a little while. The contrast is interesting between two children of my constituents. On the one hand, Megan Bridge is a cystic fibrosis sufferer—her mother, Gill, as I said, is outside just now— and she has made the point to me that at the moment she is old enough to study law. Like any of our children of that age, she should have great prospects, hopes and aspirations, but hers are limited because the prognosis is that she probably does not have more than another two years if things carry on as they are.

If a decision is not taken about this drug soon and agreement is not reached, it is at Megan’s end of the spectrum that that becomes very difficult, because not only will further damage set in, as was said by the hon. Member for Sutton and Cheam earlier, but a decision might not be made within a year or two, in which case the prognosis for her and for her family is incredibly poor. She begs that we and the Minister—I will come back to this point shortly—make a clear decision with the drugs company as soon as possible.

At the other end of the spectrum is somebody called Amelia, who is only five years old. Her mother, Lucie, came to see me in my surgery to talk about her condition and about how the family copes with it. This poor girl, like so many others who have been mentioned, has to take 40 tablets a day, and has huge amounts of physiotherapy, including three nebulizer treatments, every single day. She is not yet on a feeding tube, but her mother has been told that if the current situation goes on for much longer then she will be.

My point is that these accounts are two ends of the spectrum. In a sense, they are not representative; although they are representative of sufferers, they are not representative of a vast number of people out in the country, because this is such a peculiar genetic condition that, as has been said time and again, not a huge number of people have it. That is where this place and Governments of whatever persuasion—this is not party political—sometimes have to recognise that the common good is not always about majorities and large numbers. It is more often the case that this place is set up to deal with those who are so small in number that they are unable to make the case for themselves. They are unable to drive the point home; they are unable to muster the vast number of votes that it might take a matter to the point where MPs listen very carefully.

What we have seen today is of enormous credit to the humanity of my colleagues on both sides of the House. These people are not likely to change the vote in my colleagues’ constituencies, but they care enough about the idea that these people’s lives matter that we might be able to do something for them.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

I thank the right hon. Gentleman for giving way. I am listening carefully to what he is saying, and he is saying exactly what I was just about to point out, namely that this is why we are here. This is why we are sent to this place, to speak up for the people who cannot speak up for themselves. My constituent, John Bacon, who is in his twenties, sent me a very simple email that said, “Please help me. Please speak for me and advocate for me. And not just for me, but for all those with cystic fibrosis, and remove the price that has been placed on our lives. We are worth it.” They are—and if we do not speak for those who cannot speak loudly, we should not be here.

[Mr Duncan Smith]

I completely agree with the hon. Lady, and that is really the point that not just me but pretty much everyone who has spoken has been making.

I do not know what detailed conversations and discussions are going on about this drug. I sat in government, so I know how complex these things are sometimes. I say to my hon. Friend the Minister that “frustrating” was the word I often used when bodies are set up and fall back on their rules because they are not so exposed to public scrutiny.

The latest evidence—I understand that it comes from the company—shows that there is stronger data and that this drug is even more vital than it was before. It now slows lung decline by 42% and it might turn out that it is even more effective than that, which would give somebody like Megan, who I mentioned earlier, the possibility of longer. What is that delay about? The possibility of transplant, and even further down the road the genetic changes that may well be able to be introduced. So, buying time matters dramatically for this group, in the hope that things will improve for them.

When I was in Government, I know that we spent a lot of time on social impact bonds. One area we worked hard on—the Government have incredibly good data on it because we made a number of case studies—is the cost-benefit analysis, to allow us to say that local authorities and so on could set up social bonds to change the number of people going into prison, or to affect the number of people who fail at school. So it was possible to forecast how a cost-benefit analysis would work; it exists.

Right now, I am not certain that NHS England and for that matter NICE are employing that system. I urge my hon. Friend the Minister to go to the Cabinet Office and say, “We have done the work on a proper cost-benefit analysis of this drug, and once it is tied in with future developments of other drugs and balanced with health treatments in hospital, constant work with physiotherapy and all the rest of it, I am certain that this group will not only to be able to have this drug, but we will ask ourselves why that didn’t happen before when it so mattered and it benefits them. It also benefits us because instead of their being in hospital, others may be able to use that hospital treatment.” That is a good cost-benefit analysis and I urge my hon. Friend to look at it.

Deafness and Hearing Loss

Teresa Pearce Excerpts

Thursday 30th November 2017 Westminster Hall

[Teresa Pearce (Erith and Thamesmead) (Lab)]

It is a pleasure to see you in the Chair, Ms Buck. I too express gratitude to my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick), not just for obtaining the debate, but for the work he has done on deafness and hearing loss for many years; he is a great champion of the cause. I also want to mention the hon. Member for Rochester and Strood (Kelly Tolhurst), who shared her personal story. I was struck by what she said about her mother’s isolation, because my late mother-in-law was one of the most sociable people anyone could meet—show her a piano and she would play for two hours—but then she lost her hearing, and with that, she lost her social circle and became incredibly lonely. We hear a lot about elderly people being lonely, and I wonder how much hearing loss has to do with that.

The debate is very broad—as broad as the challenges that people living with deafness face; so I shall confine my remarks to two areas, the first of which is cochlear implants. A constituency case has been brought to me by several constituents, including the grandmother of Jacob, who needs a cochlear implant. He is profoundly deaf in the right ear and severely deaf in the left; he is four years old. He has been tested by St. Thomas’ Hospital cochlear implant team, who supported the case for an implant, but the NHS has turned him down. The family have been told he can have the implant only if they can raise £44,000. My constituents are not the most affluent in the country, but they are truly wonderful, and this will not be the first time they have crowd-funded help for someone. Last year they helped a young mother to get a second stem cell transplant. Their campaign, “Help Jacob Hear”, has run boot sales, raffles and fêtes and raised nearly all the money, which is great news—but it raises the question of what the NHS is for if it is not to help children such as Jacob. The spending of taxpayers’ money at this point would potentially be handsomely repaid over the lifetime of that young boy. It might be expensive, but what is the financial and social expense of not funding it?

The second area I wanted to focus on is Access to Work. Quite a number of my constituents are British Sign Language interpreters, and many of them have written to me. One, Joanna, works regularly with people who are helped by Access to Work to participate equally and fully at work. In 2015 the DWP, as has been mentioned, imposed a cap on Access to Work awards, and Joanna is worried that the cap will act as a glass ceiling on deaf colleagues’ and friends’ career aspirations. Those with hearing loss will not be able to apply for promotions or look to develop their career, because the Access to Work support will not be sufficient. That means that they will be able to book interpreters for perhaps only three days a week. What will happen on the other two days? Deaf professionals are left at a disadvantage, experiencing stress and frustration as it leads to their being removed from viable career paths. The consequences can be reduction of their working hours and in some cases complete removal from employment. There are self-employed deaf professionals in the arts who have not been able to develop projects, because of lack of access. Research done by the group DeafATW with people whose awards have been capped already or are due to be capped next year, shows a negative impact on careers and aspiration. Especially affected are deaf people who are in or who aspire to professional, managerial or leadership roles, or those who are self-employed and who run their own business.

Another of my constituents, Andrew, is deaf. He uses British Sign Language and works as a senior team administrator with Surrey County Council. Access to Work pays for the interpreters and note-taking that make it possible for him to communicate with colleagues, customers and others, and help him to participate more fully and equally at work, even though it does not stretch to providing assistance at longer meetings where it is impossible to focus on the interpreter and to take notes at the same time. That said, it is likely that the support that Andrew gets via Access to Work, which we all agree is a fantastic system, is much more than what would be seen as a reasonable adjustment for his employer to make. Access to Work has revolutionised the career opportunities for people like Andrew, and shattered the glass ceiling that previously often limited people to doing manual jobs. It has ensured progression for deaf people that is based on talent, which is as things should be. There are now deaf chief executives, deaf intermediaries working at the Ministry of Justice, deaf theatre directors, deaf social workers and a deaf senior team administrator at Surrey County Council. I am concerned that a new policy will undo that good work.

In September DeafATW ran a survey among deaf people about Access to Work. Among those who will be subject to the Access to Work cap from 2018, nearly half said they would not apply for promotion in future, because they were worried that in a new job they would not have enough communication support as a result of the cap. For the same reason, a fifth said that they had already had opportunities to apply for promotion, but had not done so. Nearly half said that they would stay with their current employer as long as possible, because they were worried about what a new employer might think about the effect of the cap on their ability to do their job. When talking about growth we hear a lot about the “productivity puzzle”. It is not much of a puzzle really if we are limiting where people’s talent can take them with such a cut.

In about a third of cases, the employer was either taking or thinking about taking action to check whether the individual could still do their job properly. Deaf people fear that having a capped award means that they will not be able to do their job properly, and employers are concerned about it too. As a consequence, deaf people, whether they are already subject to a cap, are expecting to be subject to one in 2018, or are without a cap in their current work, have said that they are already avoiding applying to work in professional, managerial and senior roles.

In 2015, the Government were clear that a key challenge in administering Access to Work was managing a demand-led programme within a defined budget. They said

“We must achieve a balance between meeting customer need and achieving value for money for the taxpayer. It has been a long-standing aspiration of the programme to support more disabled people into work, so we must address the challenge of supporting this growth whilst keeping Access to Work affordable”.

I would say that it is money well spent. I could not find more recent figures, but the Sayce report in 2011 said that for every pound spent £1.48 came back to the Treasury. That is clearly a case of spending to save.

The Minister may be aware that in July 2015 the Government responded to the Work and Pensions Committee report entitled “Improving Access to Work for disabled people”. The report was scathing about the statistics, stating:

“This lack of transparency is unacceptable. We recommend that DWP change its approach to Access to Work statistics and that, as a minimum, it regularly publish the following information: an indicative annual budget; annual expenditure outturns, broken down by support element and impairment type (including autism spectrum disorders); the number of service users by size of employer; and employers’ mandatory and voluntary financial contributions, broken down by size of employer.”

In their response, the Government admitted that there was work to do to meet those requirements. Will the Minister now, or perhaps by writing to me, update us on progress with the Access to Work statistics? The previous Minister said that there were a lot of statistics available, so I should be pleased to know what progress has been made in supplying the information. Will the Minister also provide figures to show the trend in the number of deaf people supported by Access to Work prior to the introduction of the cap, and afterwards?

The Select Committee also highlighted a particularly strong case for the DWP to improve the accessibility of its disability-related services, recommending that it introduce a video relay system to enable deaf BSL users to contact the Department more easily. Has there been any progress on that? By way of a reminder, I noticed when I arrived that there is a signer for the debate, and I recalled that when the Work and Pensions Committee undertook a review of Access to Work in 2015, we had a sitting when deaf people came to give evidence, and there were deaf people in the Public Gallery, and no one had thought to book a signer. Luckily, one of my constituents had come to watch. He was a qualified signer, and he took over and helped us. In this place, sometimes we do things very well and sometimes we overlook things. If a Work and Pensions Committee looking into accessibility for deaf people did not think to have a signer, it goes to show that we must do better on this. Today’s debate is a step forward.

Valproate and Foetal Anticonvulsant Syndrome

Teresa Pearce Excerpts

Thursday 19th October 2017 Commons Chamber

[Fiona Bruce (Congleton) (Con)]

I pay tribute to the right hon. Member for North Norfolk (Norman Lamb) for so eloquently articulating the concerns that many of us share about the taking of sodium valproate by expectant mothers.

I am speaking today because I believe there is a case for Ministers to answer on the grounds of compassion and justice as to how and why pregnant women were allowed to take sodium valproate for so many years without being better advised and informed, and without their unborn children being better protected from the risks. That is particularly the case since professionals became increasingly aware of those risks over the years—as early as 1973. As we have heard, the risks are huge. At the end of the day, the people who should have been able to weigh them up and choose whether to take valproate while pregnant were the mothers. I appreciate that in 1973 we were, as has been said by a practitioner in medicine, in a more paternalistic era, but that was not the case as the years went by, and certainly not in 2016, when the valproate toolkit—the patient guide that I have here in my hand—was published.

Mothers were not given the relevant information and, sadly, far too many still are not. It is absolutely critical that they are given it, because the toolkit is stark, stating:

“If you take valproate when you are pregnant it can harm your unborn child…Taking valproate…can cause birth defects and problems with development and learning…In women who take valproate while pregnant, around 10 babies in every 100 will have a birth defect”,

such as

“spina bifida…facial and skull malformations…malformations of the limbs, heart, kidney”

and other organs. It goes on to say that

“about 30-40 children in every 100 may have developmental problems”

such as

“learning to walk and talk…lower intelligence…poor speech and language skills”

and “memory problems.” It states that

“it is…important that you…know about these risks”.

But for years women did not know about the risks when medical professionals did. They might not have known, and probably did not know, all those details. However, I have with me a copy of a letter from the Committee on Safety of Medicines—the precursor to the MHRA—from 1973. It refers to a number of studies and says:

“it is now clear from other studies…that the use of anticonvulsants during pregnancy…is liable to produce other abnormalities as well as hare-lip and cleft palate. The risk appears to be low and not sufficient to justify stopping the use of anticonvulsants when they are necessary for the control of epilepsy.”

There we have it—the Committee on Safety of Medicines was aware of this in 1973. The documentation relating to the licensing application in 1974, which the right hon. Gentleman mentioned, says that the product is licensed

“for use in general, focal or other epilepsy. In women of child bearing age, it should only be used in severe cases or those resistant to other treatment”.

So we now know that the dangers were being raised as long ago as 1973 and 1974.

In response to these concerns, the CSM instructed that an alert must

“not go on the package inserts”

so that patients would be protected from “fruitless anxiety”. Because patients did not see anything, they were denied the information and therefore the choice to abstain from this drug. Yet very much more anxiety was caused for many of them when the reality was that thousands of babies were born with life-changing disabilities and deformities that could have resulted from taking this drug during pregnancy.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

Does the hon. Lady find it even more shocking that it was decided to keep this information from women in 1973-74, in the wake of the thalidomide scandal, when it should have been uppermost in people’s minds that pregnant women needed warning about the drugs they took? That should have made it more likely that women were informed about the risks.

[Fiona Bruce]

The hon. Lady makes a very good point.

Further warnings were issued. In 2000, a patient information leaflet from the producer, Sanofi, said:

“It is known that women who have epilepsy have a slightly higher risk of having a child with an abnormality than other women. Women who have to take Epilim in the first 3 months of pregnancy to control their epilepsy have about a 1-2% chance of having a baby with Spina Bifida.”

In 2005, Sanofi added:

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

and that some

“babies born to mothers who took Epilim…during pregnancy may develop less quickly than normal or have autistic disorders.”

Warnings were emerging over the years, but nothing was done to ensure that patients were told. Why did patients have to wait almost 30 years to be warned of the risks?

Janet Williams and Emma Murphy, whom the right hon. Member for North Norfolk (Norman Lamb) mentioned and whom I have had the privilege of meeting, are tenacious and brave women who have campaigned for years and set up a support group for affected families. I pay tribute to them, and I want to tell the House a little bit about their family situations. Janet has two sons aged 26 and 28: Lee and Philip. Janet took Epilim, but nothing else, during both pregnancies. She told me:

“I wasn’t offered anything else—and no one told me of the risks.”

Lee, at 26, has curvature of the spine, Asperger’s, learning difficulties and memory problems, and he cannot hold down a job. Philip, at 28, has even more problems. He has problems with hearing, vision, speech, language and walking, as well as floppy joints. He is still fully dependent on Janet.

Emma had her children a generation later. She has five children, aged eight to 14: Chloe, Lauren, Luke, Erin and Kian. They have all been diagnosed with a number of symptoms. All have varied problems, including autism, incontinence, deafness, cerebral palsy and curvature of the spine, and all are slow to develop. Emma took the same dose of Epilim during each pregnancy. She told me that she questioned that, but was told that it was the best drug to control her seizures and that her baby would be fine. She took no other drugs during her pregnancies. No one warned her of the risks.

The tragedy is that those two women represent more than 1,000 others in their support group, the Fetal Anti Convulsant Syndrome Association. Together, they founded the Independent Fetal Anti Convulsant Trust, a registered charity, to campaign for better awareness of the risks of taking valproate, to prevent further such difficulties occurring, and to challenge the Government. There is, as I say, a case to answer, and I do not believe that we would be here today were it not for these two women.

--- Later in debate ---

[Mims Davies]

Absolutely. Speaking about this issue in this Chamber will empower our women constituents, before and during pregnancy, so they can be informed and make the right choices. That is the outcome we should all be hoping for.

Similar issues were raised yesterday during a debate in Westminster Hall on mesh implants. New mothers in particular had taken the advice they were given without hesitation. A woman’s first pregnancy can be an unsettling time with all the changes their body goes through. I would imagine that for people suffering from epilepsy or bipolar disorder that time is even more nerve wracking. It is absolutely right that we are measured when we talk about these issues.

It is important that our specialists ensure that women are given the correct and proper guidance. Patients need knowledge and they need it more than anyone. They live with the consequences if things go wrong and they will always look back on their decisions. If they have not been given the right information, how can they truly know they have made the right decision for themselves and their family? Siblings are often impacted as well.

The Government and MPs have a really important role to play in raising awareness of medical issues during pregnancy, including those concerning sodium valproate. I recognise the efforts that have been made, with labelling on packages. I am sure the Minister will agree, however, that more needs to be done. This drug, introduced in 1974, has been crucial, but support for families affected is also crucial. I welcome the fact that young people who have been affected are to be included in the new framework for health and social care for children and young people. It has been a real battle, but clinical commissioning groups and local authorities are getting to grips with it. It is really important that they receive support on a local level. I welcome the Minister’s forthcoming meeting with the all-party group, and I know that Ministers are taking this matter seriously, but I ask the Department for assurances on similar health issues affecting women, such as those relating to Primodos and mesh implants. We have moved to an incredible place on blood contamination—some of my constituents were affected by that—and constituents have written asking me to raise this issue too. We want more action, and there is a common denominator.

[Teresa Pearce]

Two years ago, I asked the Minister to extend the Primodos inquiry to include valproate, but my request was declined because, I was told, the two issues were very different, yet they seem to be quite similar. Does the hon. Lady think that that was a missed opportunity?

[Mims Davies]

As a woman in Parliament, I think that any opportunity not taken to raise women’s issues is a missed opportunity, and I know the Minister is listening intently.

The hon. Member for Newport West (Paul Flynn) raised a point about the seemingly cosy relationship the MHRA has with the drugs companies, when it suits it, and sometimes the laissez-faire attitude it adopts, when it suits it. It is incomprehensible that greater independence cannot be injected into this area. We need openness and reform. I would like the Minister to take a look at the position in France and consider setting aside some funding for compensation for medical accidents.

Few in the Chamber can imagine the hardship, guilt and heartbreak of the impact of taking a simple prescription drug during pregnancy and finding out later that it might have had an effect on one’s child. I am lucky to have two healthy beautiful daughters. We are all at the mercy of decisions we take during our pregnancy and the professional guidance we receive. We are fortunate to have the opportunity to raise awareness among people in this situation, but there are those not lucky enough to be sufficiently informed. This is an important debate, therefore, and I urge the Department to work with the MHRA to give patients full confidence in it on all pregnancy matters.

Social Care

Teresa Pearce Excerpts

Wednesday 16th November 2016 Commons Chamber

[Teresa Pearce (Erith and Thamesmead) (Lab)]

I welcome the contributions made by Members on both sides of the House. They have highlighted the scale of the crisis we face in adult social care. My right hon. Friend the Member for Leigh (Andy Burnham) set out passionately the long-standing need for integration. We had informative and knowledgeable contributions from my hon. Friends the Members for Halton (Derek Twigg), for Tooting (Dr Allin-Khan), for Halifax (Holly Lynch), for Wirral West (Margaret Greenwood), for Dulwich and West Norwood (Helen Hayes), for Heywood and Middleton (Liz McInnes) and for Great Grimsby (Melanie Onn). On the Government side, we also heard thoughtful contributions from the right hon. Member for North East Bedfordshire (Alistair Burt) and the hon. Members for Central Suffolk and North Ipswich (Dr Poulter), for South Cambridgeshire (Heidi Allen) and for Bexhill and Battle (Huw Merriman).

It seems we all agree that there is a crisis. I believe that 2017 will be a make-or-break year for our social care system. That system is currently teetering on the edge of a precipice. More and more, we find that local authorities can no longer afford to fulfil their statutory obligations regarding the social care of elderly and disabled people. Social care providers are handing contracts back to councils because they are no longer financially viable. Beds in hospitals are occupied for weeks—sometimes even months—by people who are well enough to leave but cannot because there is no social care available for them once they do.

[Paul Farrelly (Newcastle-under-Lyme) (Lab)]

In a matter of months, within the still secret Staffordshire STP, the projected 2021 deficit for social care has jumped from just over £100 million to £256 million. With the NHS deficit, that makes more than half a billion pounds now, excluding anything from Stoke-on-Trent. Without further funding and investment, that gap is simply unbridgeable, so it is hardly surprising that in the past few days both the STP chair and its programme director have tendered their resignations.

[Teresa Pearce]

I am glad my hon. Friend has had the chance to raise that very important point.

The crisis is affecting elderly people across the country, as we have heard eloquently expressed by my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley). More than a million elderly people in this country who need social care are getting no support. Half of older people who have difficulty bathing or getting dressed receive no support. One third of all older people who have difficulty going to the toilet on their own are receiving no support. An estimated 1.1 million are chronically lonely. Is it any wonder that almost 4 million older people in this country now say that television is their only source of company? That is happening on our watch, and we should all be both saddened and shamed by it.

The rise in demand for social care does not come as a surprise to any of us, however. We live in a society with an ageing population. We must concentrate on building a sustainable social care system to meet that rising demand. Members across the House know from their own constituencies, as I do from mine, that the spending cuts have already hit vulnerable people. One in 10 care homes has closed since 2010, and 400,000 fewer people accessed care in the last Parliament because of funding reductions. According to Learning Disability Voices, a shocking three quarters of all people who apply for social care support from their local council are now turned away.

For those who can access care, the bar for what can be described as care gets lower and lower. Staffing levels have been so severely reduced that workers have barely any time to actually look after people. As we have heard, some visits have been cut from 30 to 15 minutes. That is 15 minutes to make someone dinner, to bathe them, to give them medication, to change their sheets and to give them any other help they might need. It is barely time to take your coat off and say hello. In fact, 15 minutes is about the time we take in this place to divide. I hope Members will bear that in mind when they pass through the Lobby shortly.

The King’s Fund has described the care system as a

“threadbare local authority safety net.”

Although the majority of those receiving care are elderly people, roughly a third are younger people who have a physical disability, learning disability or mental health problem. These people are far less likely to have income to support them and far less likely to have children who can care for them as they get older. In fact, they are more likely to have elderly relatives who live in dread of what will happen when they are gone.

When disabled people are looked after in the community, with a local authority-provided care package, their needs are reduced by up to 50%. We often hear about needing to reduce the dependency culture, and the provision of social care, including day centres, does just that: it allows people with disabilities to live an independent and healthy life. Rather than allowing this sector to crumble, we should be looking at how to invest in and expand it. It has been said here today that the mark of a civilised society is how we treat the disabled, the elderly and the vulnerable. We are failing that test miserably.

Let us be clear about one thing: this crisis is not the fault of those working in the social care sector. In fact, they are among the most undervalued and underpaid workers in the country. Neither is this crisis the fault of local government. Nobody goes into local government and public service to cut care and support for the vulnerable. Local authorities are trying to plug the gap. In 2014 alone, councils diverted £900 million from other budgets to maintain the current level of social care, despite making efficiency savings. Local councils are on the frontline of government, providing the integral services that our communities rely on. It is simply impossible for them to plug the momentous funding gap in adult social care that they face. Let us make no mistake about the root of this crisis: it is the stark result of the austerity policies pursued by the previous Chancellor. It is his six years of brutal and devastating cuts to local government that have brought us here.

If we let our elderly and disabled people languish in loneliness and frustration in unhygienic and inadequate conditions, it will be a stain on our collective conscience. What kind of country would we be? When the new Prime Minister took up her position, she stood on the steps of No. 10 and said she wanted

“a country that works for everyone.”

Today, the Government have an opportunity to prove that the Prime Minister meant what she said. I would like the Minister to consider three questions when he responds to the debate. Will he confirm that the better care funding is not additional money, but has in fact been taken from the existing NHS budget? What assessment has he made of the effect of the living wage on care contracts, and does he have an estimate of how many contracts will be exited in the next 12 months by providers? Will he let me know what steps and checks he is making to ensure that local authorities are not commissioning 15-minute care visits, as recommended in their own guidelines? If the Minister cannot answer those questions today, I hope he will write to me in the coming weeks.

We are all hopeful that the autumn statement will bring forward urgent funding to stem an impending crisis in social care, but there must also be a strategy to put social care on a sustainable, long-term footing so that people can grow old in this country without fear, and disabled people can live with dignity and safety. The Government must recognise that by stripping local government of its funding to the point that even statutory requirements are difficult to meet, we will not benefit the economy or productivity of this country, or the wellbeing of our society. As the sixth-richest economy in the world, this country can, and must, provide this vital assistance to the most vulnerable people in society.

Oral Answers to Questions

Teresa Pearce Excerpts

Tuesday 13th October 2015 Commons Chamber

[Mr Hunt]

We are making good progress and we expect to make a substantive announcement on that before the end of the year. That will be about improving the standard and the quality of care in A and E departments, which I know my hon. Friend has a great interest in, and removing the confusion that people feel about what precisely the NHS offer is in their area. It is looking good and I hope to have something to announce to the House before too long.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

T3. A recent whistleblower revealed that the 111 helpline is in meltdown and at least two babies have died after staff failed to recommend treatment that may have saved them. Two weeks ago my own three-week-old premature granddaughter was very ill. Her parents called 111 and were promised that the duty doctor would call. He did not. They waited the whole long night and the next morning took her to A and E, and she was diagnosed with meningitis. What exactly is the Minister doing to fix the crisis in the 111 service?

[Mr Hunt]

This is a very serious issue and I will happily look into it personally to make sure that a full investigation is taking place into the incident the hon. Lady mentions, which clearly should not have happened. The 111 service has been an improvement on what we had before. It has taken nearly three times as many calls as the service it replaced, and around a quarter of those are referred to a clinician, but it is clearly not perfect, given the hon. Lady’s story, so I will look into the case that she raised.

NHS: Financial Performance

Teresa Pearce Excerpts

Monday 12th October 2015 Commons Chamber

[Ben Gummer]

My hon. Friend raises an important matter that has also been raised by my hon. Friend the Member for South Northamptonshire (Andrea Leadsom). Given my responsibility for maternity services, I am particularly focused on the need to do better in perinatal mental health and maternity care, and I hope to say something about that in the not-too-distant future.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

As far as I am aware, the Minister has not answered the question about the delay in issuing the report. If he cannot answer now, will he put a note in the Library and explain the reason for that delay?

[Ben Gummer]

I answered that point entirely accurately and categorically, and on behalf of the ministerial team I refute the allegation.

Epilepsy

Teresa Pearce Excerpts

Thursday 26th February 2015 Commons Chamber

[Teresa Pearce (Erith and Thamesmead) (Lab)]

First, I congratulate the hon. Member for South Thanet (Laura Sandys) on securing this debate and on continuing to raise awareness of epilepsy. Although we are on opposite sides of the Chamber, I am sad that she is leaving this place after May, as the work she has undertaken on behalf of people with epilepsy is much respected both within and outside this House.

Epilepsy is a life-threatening, neurological condition that can strike anybody at any age without warning. However, being a woman with epilepsy is not the same as being a man with epilepsy. Epilepsy and its treatment can affect sexual development, menstrual cycles, contraception, fertility and reproduction. That is why I am taking the opportunity today to talk about the urgent need to improve the support and advice available to women of child-bearing age who have epilepsy. In particular, I would like to highlight the importance of enabling women to make informed choices about their drug treatments.

Approximately 139,000 women of child-bearing age have epilepsy, and around 2,400 babies are born each year to mothers taking these anti-epileptic drugs yet women with epilepsy remain uninformed about their choices and medication. They lack the specialised care and support they need, and they are at increased risk of maternal death. Given the repeated concerns raised over decades about sodium valproate and its links to the development of birth defects and foetal anti-convulsant syndrome, commonly known as FACS, this is nothing short of a scandal.

The use of anti-epileptic drugs can present women with various problems before conception and during pregnancy. National guidelines indicate that women of child-bearing age with epilepsy should be made aware of the impact their medication could have on their unborn baby. While GPs should be highlighting these risks, the provision of this specialised care and information is variable at best and non-existent at worst—and this despite the fact that in 2012 the National Institute for Health and Care Excellence recommended a new indicator to encourage GPs to tell girls and women of child-bearing age about the risks posed by anti-epileptic drugs. Sodium valproate was specifically named as a drug that should be discussed. Is the Minister concerned that this information is not widely distributed, and what steps will the Department of Health take to ensure this is remedied as a matter of urgency?

Sodium valproate is considered to be one of the most effective drugs for controlling epileptic seizures, but it has been found to increase the risk of babies being born with cleft palates and spina bifida. It is also associated with a very high risk of major malformations and neuro-developmental impairment. Despite that, a survey found that 25% of mothers were unaware of the risks, which is unacceptable and unjustifiable. If we know that the medication can cause so much harm—it is also prescribed for women who do not have epilepsy, to treat other conditions—why are women not being widely warned of its potential dangers? I accept that it is important to control epileptic seizures during pregnancy, but given that anti-epilepsy drugs increase the risk of foetal malformations, delayed development and foetal and maternal death, women with epilepsy are in an impossible position. They must either continue to take the drugs or risk seizures, both of which pose an increased risk to the mother and the foetus. Pregnant women who abandon their medication are at an increased risk of developing uncontrolled seizures, which can be fatal. About four women with epilepsy die during pregnancy each year, but those deaths could possibly be avoided if the right support were provided.

I am sure that we will talk a great deal about numbers and statistics this afternoon, but let me put into context the way in which epilepsy affects people. I know a woman who, at the age of 15, began to have night seizures in her sleep. She was diagnosed with epilepsy and was prescribed sodium valproate. Eleven years later she married, and she and her husband decided that they wanted children. In 2007, having done some research and understanding the risk that sodium valproate would pose to her baby, she changed her drug. There followed, from 2008, a terrifying five years of daytime seizures she had never had to deal with before. Her previous seizures had always taken place while she was asleep, and she had been seizure-free for 12 years.

The woman was now afraid to go out. She was afraid to get on a bus, and she was afraid to go to work. She was a teacher of primary school children, and she was terrified of having a seizure in front of them, because they would not know what to do. But the bitterest pill of all was finding that, either because of the increased seizures or because of the new drugs, she was no longer ovulating. She had to choose between taking a drug that would stop the seizures but might pose a risk to the baby, and taking a different drug, having the seizures and risking her fertility. That is a very difficult position for women to be in, and they need advice.

[The Minister of State, Department of Health (Norman Lamb)]

I take this issue extremely seriously. There has been an EU-wide review of the risks involved. The Medicines and Healthcare Products Regulatory Agency issued new guidance in January, and the British National Formulary has also been updated. The Department is considering the introduction of a “red flag” system to notify GPs of the risks posed to women of child-bearing age, and I personally am very keen to introduce such a system.

[Teresa Pearce]

I know that the Minister has met some of the mothers involved, and I am very grateful for that.

Women such as the one I have just mentioned are in desperate need of specialised guidance and support from their GPs, but there is no such support at present. GPs should be providing pre-conception counselling and tailored advice, but they do not appear to be taking that responsibility seriously. In 2012, a survey by Epilepsy Action revealed that 26% of women who had been pregnant in the last five years, or were planning to become pregnant, had never received counselling. That puts women and unborn babies at risk.

Pre-conception counselling should be fully embedded in the care pathway of all women with epilepsy and child-bearing potential, and there should be a specialist care pathway for all women with epilepsy to ensure that their pregnancies are flagged as potentially high risk. Every such woman should receive regular input from an epilepsy specialist and an obstetrician, and any breakthrough or worsening of seizures should be investigated as a matter of urgency. Will the Minister tell me what funding, training and planning are needed to implement those steps?

The co-operation of GPs and health care professionals is crucial to ensuring that any strategy actually works. I welcomed the stronger guidance that was released in January by the Medicines and Healthcare Products Regulatory Agency. It states that sodium valproate should not be prescribed to female children, female adolescents, women of child-bearing potential or pregnant women unless other treatments are ineffective or not tolerated. As the Minister said, the guidance followed a Europe-wide review. What steps will the Department take to ensure that it is fully implemented? Every woman taking an anticonvulsant has the right to an informed choice, but we know that information on the effects of sodium valproate on pregnancy was withheld from female patients in 1972. Following the European review in 2014, why has providing information to female patients not been made a mandatory action?

At this moment, the picture is bleak. A recent report entitled “Saving Mothers’ Lives” highlighted the failure to reduce maternal deaths from epilepsy over the past two years. If women with epilepsy were provided with support and health care tailored to their specific condition, it is likely that the number of maternal deaths would be reduced. The science is available to ensure that women with epilepsy can have successful pregnancies with the right support, but that must be universally available to all women with epilepsy since simple measures can decrease the risks associated with epilepsy in pregnancy. I have worked closely with women whose children have suffered from FACS and families who have been affected by the lack of information.

In particular, I have worked with Janet Williams and Emma Murphy, who run IN-FACT, the Independent Foetal Anti-Convulsant Trust, and I respect and admire them for their relentless commitment and dedication to raising awareness of this issue. I first met them just after I entered the House in 2010, when families were devastated following the withdrawal of legal aid for a class action against the manufacturers of the drug. After six years of preparation, that trial did not go ahead. I tabled an early-day motion, signed by 82 MPs, urging the Legal Services Commission to reconsider, but it did not. Last year, I wrote to the Department of Health to ask whether compensation would be available. I received a response from the Under-Secretary of State for Health, the hon. Member for Mid Norfolk (George Freeman), who is responsible for life sciences. He said:

“Compensation for people who believe they have been adversely affected by a particular drug is a matter for the judicial system”.

I also received one from the Minister of State, Department of Health, the right hon. Member for North Norfolk (Norman Lamb), who is responsible for care and support, who said:

“it would be inappropriate for ministers to intervene in or comment on matters which must remain for the judicial system.”

The fact is that these families have sought justice and done everything they can, but they have been denied support and denied justice. Will the Government act?

Home Care Workers

Teresa Pearce Excerpts

Wednesday 6th March 2013 Westminster Hall

[Mr Smith]

I am grateful to the right hon. Gentleman for his support. All those comments are vital, and he is right that throughout Parliament and society at large we can insist on raising standards for workers who are doing a demanding, important and professional job on poverty wages, often in pretty exploitative conditions. That has to be changed.

An example to do with continuity was mentioned in the Care Quality Commission report: a client had 13 different home care workers for 35 calls. In such circumstances, clients have to explain time and time again to different care workers what needs to be done, how they like things and so on. Given that the people receiving home care increasingly have substantial health needs, the whole business of zero-hours contracts is a poor and inappropriate employment model. I do not like it anywhere, but it is especially damaging in this sector.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

Is my right hon. Friend aware that in my borough of Bexley, a particular model now in use involves a care company that is acting as an umbrella agency? The care workers whom the company sends to vulnerable people are actually self-employed, which means that it is pushing an employment liability on to a vulnerable person and abdicating responsibility. What happens in Bexley is meant to give people greater choice, but it is bogus self-employment. Is the Minister aware of that model? Will he consider looking at it in detail, to see whether it is true self-employment or merely tax planning?

[Mr Smith]

Or, indeed, merely a way of circumventing the national minimum wage. My hon. Friend makes an important point. I will come on to some requests to the Minister for action in that very area.

We touched earlier on the 15-minute slots for care workers, and there are serious concerns about the care that workers are able and allowed to provide when they arrive at someone’s home. The financial pressures on social services providers and on paying clients are leading to increasing use of 15-minute slots. Those may give time for a brief check, but not for caring in any meaningful sense of the word.

We need a thoroughgoing overhaul of the terms and conditions of home care workers. The non-payment of travel time breaks the minimum wage laws, which I understand has been confirmed by Her Majesty’s Revenue and Customs to Unison. Will the Minister meet HMRC so that a priority drive can be put in place to ensure that every home care worker in the country is contacted and helped to secure their entitlements? That would help not only the workers’ basic rights but recruitment and retention in a job that is far too often seen as low-status because it is low paid and has such poor conditions, and that people get out of because they simply cannot afford to carry on working.

Last year, I was approached by a constituent who was working as a home care provider for a company under contract to Oxfordshire county council. The provider was paying him little more than the minimum wage for the exact, restricted time that he spent in each person’s home, with no allowance for travel. After paying travel and other employment costs, he was simply not earning enough to get by, and he found out that he would be better off back on jobseeker’s allowance, which was where he went. I took up the case with social services and the then Secretary of State for Health; both said that it was a matter for the provider. For the providers, however, it is a matter of profit, competition and, for far too many of them, what they can get away with. That is the nub of the problem: in a contracted-out, decentralised system operating to market competition, the buck does not stop with anyone.

I am sure that the public want better safeguards and decent treatment for the vulnerable people being cared for and for the workers who do that vital caring work. That means putting in place a framework of standards and entitlements for clients and their carers, along the lines of the ethical charter for which Unison has argued. That is what I am asking the Government to do. Will the Minister reply to my points on the issues of training to consistent and accredited standards, a professional register, properly enforced standards, the adequacy of inspection, comprehensive enforcement of the minimum wage and promotion of the living wage?

It is thanks to the dedication of many care workers and the good service providers that there are out there that home care is not worse than it is. Far too much of it, however, is not nearly good enough, and some of it is very bad. The people needing care and their families are worried about such matters, and a test of this Government, or of any Government, must be what they do to raise the standards of home care and the working conditions of those who provide it.