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.

South London Healthcare NHS Trust

Teresa Pearce Excerpts

Thursday 31st January 2013 Commons Chamber

[Mr Hunt]

We accept that very detailed analysis was used by Matthew Kershaw to come up with those numbers. We will look at them very carefully. However, we need to have sensitive negotiations with the new partners who will be part of making this solution happen before the final numbers are agreed on.

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

When modelling future need, what account did the administrator or the Secretary of State take of the fact that there will be increased health needs due to the increases in child poverty and homelessness in my constituency, as is predicted by every expert on these matters? The efficiency proposals rely to a large extent on keeping vulnerable elderly people out of hospital and caring for them in the community. Given the local authority budget cuts and the fact that some private companies that deliver those services in Bexley in my area are slashing the wages and conditions of staff, how does the Secretary of State think those services will be improved? Will he urgently review the services for elderly people to ensure that they stack up with the proposals that he has outlined today? This morning, the Secretary of State has said a number of times that these plans will save lives. I sincerely hope that he is right. If time shows that he is not right, will he resign?

[Mr Hunt]

In such matters, what a Minister does is take very seriously the medical advice they are given—I am sure the hon. Lady’s party was exactly the same when it was in power. Medical advice suggests that the way forward I am deciding on and announcing this morning will save 100 lives, and I am taking the decision on that basis. The hon. Lady would do no differently in my shoes.

For child poverty, changes in demography are taken into account in the modelling used, but the overriding priority has been to improve clinical services. That will make the biggest difference to the most socially disadvantaged people, including the frail elderly who—I agree with the hon. Lady—are often the least well served by our current NHS structures and the silos between what is done by local authorities and the NHS. I and my ministerial colleagues in government are currently doing a lot of work to break down those barriers and offer a more integrated service to the frail elderly, so as to avoid some of the problems mentioned by the hon. Lady.

Oral Answers to Questions

Teresa Pearce Excerpts

Tuesday 21st February 2012 Commons Chamber

[Jessica Morden (Newport East) (Lab)]

3. What recent assessment he has made of the future of private health care.

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

6. What assessment he has made of the future of private health care.

[Mr Russell Brown (Dumfries and Galloway) (Lab)]

13. What assessment he has made of the involvement of the private health care sector in the NHS.

--- Later in debate ---

[Teresa Pearce]

On the BBC’s “Newsnight”, the Minister of State stated that the Health and Social Care Bill would turn the NHS into a “genuine market”. How does this belief fit in with the NHS founding principle that access should be based on need, not market forces?

[Mr Burns]

I am sorry—the hon. Lady has obviously not listened properly to me. It has been my guiding principle and my core belief from the day I entered politics that we should have a national health service free at the point of use for all those eligible to use it. In no shape or form does the Bill, or any actions by this Government, compromise that core belief of mine.

Epilepsy Services

Teresa Pearce Excerpts

Tuesday 12th October 2010 Westminster Hall

[Paul Burstow]

The Government proposals include a national quality board that will be responsible for considering potential areas for quality standards, and NICE will take that work forward. There is already a number of standards in the national service framework, but I will certainly give further thought to the hon. Gentleman’s point.

A number of hon. Members have mentioned information, and the Government want to give patients and the public all the information that they need to make informed choices and hold the NHS to account. We will shortly be launching a new information strategy to improve radically the range and quality of information available to patients, professionals and the public, so that there is increased transparency and strengthened accountability in the system.

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

The Minister mentioned information for patients, but one area of concern that has not been mentioned today is that involving women of child-bearing age. Currently, such women are meant to be counselled by their GPs, but sometimes that counselling is patchy or non-existent. One successful drug creates a significant increase in baby malformations, so a woman who finds herself pregnant must decide whether to carry on taking the drug with a risk to the baby, or stop taking the drug with a risk to herself. The risk of maternal death is almost 10 times higher for women with epilepsy. What can be done to make GPs take seriously the role they have when women are facing that terrible decision?

[Paul Burstow]

I am grateful to the hon. Lady for raising that point. In the proposed quality and outcomes framework for 2011-12, NICE has recommended a new indicator to encourage more GPs to talk to women with epilepsy about the drug risk during pregnancy. I hope that that will focus on the point that the hon. Lady has rightly raised.

Patients should be able to check up on local services right down to the performance of individual consultant teams, so that they can, if necessary, vote with their feet. That not only gives patients more control, but it exerts pressure on different parts of the NHS to make continuous improvements. On a professional level, it is important to ensure that there is better recording and sharing of information about services.

My hon. Friend the Member for Southport and the hon. Member for Pontypridd (Owen Smith) talked about the lack of information about neurological services at local level. I can tell them that the Department has developed a reference data set for local commissioners to use. That will give them a standard set of information to request from local providers about the different stages of care for someone with a neurological condition. Reference has been made to a dearth of data. I can tell hon. Members that there are data relating to the primary reasons for hospital admissions, readmission rates, average lengths of stay, out-patients, first to review rates and programme spend for neurology through the payment by result rates. All that information is on NHS Comparators, which is part of the NHS website. It is an online tool that presents all that information in a way that is accessible not just to professionals, but to the third sector. One of the challenges that I pose to hon. Members and to organisations with an interest in this field is to make more use of NHS Comparators, because it is a valuable tool for challenging commissioners and holding them to account and for ensuring that there is competitive localism—a real sense of comparing one area to another to ensure that we drive up standards and learn from the best.