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?
Steve Baker (Wycombe) (Con)
I ask the Government to take a close interest in the case of my constituent Jessica Monks, which I shall relate from the perspective of her parents. I am grateful to my hon. Friend the Member for South Thanet (Laura Sandys) for creating the opportunity for me to do so and for giving me the opportunity to inform myself about this important issue. I have been astonished by what I have learned.
I am glad to follow the hon. Member for Erith and Thamesmead (Teresa Pearce). As she will learn, I too will talk about issues of consent towards the end of my speech. It was shocking to hear what she set out about consent.
Jessica Monks was not just a cheerful but a positively joyful young woman. Her life and her untimely death are a case study in what can go badly wrong and what ought to be done. Jessica was born on 7 February 1996 and lived in Medmenham in my constituency. She suffered from epilepsy and was under the care of the neurology department of the John Radcliffe hospital in Oxford. I understand that she was learning to live very well with her condition.
Jessica died by suicide on Saturday 24 January 2015 as a result of a psychotic episode related to the epilepsy medication she was taking. She had been taking Zonisamide since about November 2013, but her seizures had not stopped. Her neurologist told her parents to keep an eye on her moods and to make an appointment with him immediately if her moods changed in any way.
Over Christmas 2014, Jessica, usually a joyful young woman, became noticeably low and withdrawn, very unlike her usual buoyant self. As requested, Mr and Mrs Monks attempted to make an appointment for Jessica to see her neurologist about her changing moods in early January, but despite several phone calls they did not receive a response. Her parents were concerned about her deteriorating mood so they made an appointment with her GP, who saw her on 8 January. The GP agreed that her mood had deteriorated but, crucially, felt that it was important to speak to her neurologist before prescribing any medication to help her mood improve.
On Friday 9 January, Jessica was admitted to Wexham Park hospital after taking an overdose of Zonisamide, oxcarbazepine and paracetamol. She was seen by a junior psychiatric nurse, and I am surprised that it was a nurse. I am sure that they do a wonderful job, but I would have thought that in such circumstances a consultant would have been appropriate. However, the nurse deemed her fit for discharge. Following a further attempted suicide on Monday 12 January, Jessica’s parents made another appointment to see her GP who again recommended that Jessica be prescribed an antidepressant but felt unable to do so until she had spoken to her neurologist. The GP did arrange an urgent psychiatric appointment for Jessica and, thankfully, the psychiatrist phoned that evening to make an appointment and offer out-of-hours support.
At the psychiatric appointment on 22 January, Jessica was diagnosed as suffering from a psychotic episode and was instructed to stop taking the anti-depressants immediately. The psychiatrist was concerned that the drug Jessica was taking was causing this psychotic side effect—which is, by the way, well known—and said she would speak to the neurologist that evening to discuss whether Jessica should cease taking the epilepsy drug Zonisamide.
On Saturday 24 January, Jessica died when she stepped in front of an oncoming train.
Norman Lamb
My hon. Friend is talking about a tragic case and I cannot begin to imagine what the family have been through. I am very happy to meet him to discuss further what lessons can be learned.
Steve Baker
I am extremely grateful to my right hon. Friend.
Mr and Mrs Monks feel that there was a significant breakdown in the care of their daughter, and I certainly agree with them. The speed and severity with which her mental health deteriorated due to her epilepsy medication were not considered a priority—they were not adequately prioritised—and they feel they have been badly let down by the medical professionals they saw in the days leading up to Jessica’s death.
Jessica’s death was apparently avoidable. We need to know why it was not avoided. There are a number of questions to be answered by the NHS and the investigation is ongoing, as, indeed, is the coroner’s inquest. I contacted the coroner before raising this case and they were content for me to do so. I will not run through all the questions, some of which are apparent, but I should like to ask in particular why was the consultant neurologist not more available? Why, when it is well known, as the Library brief explains, that some of this medication can cause these side effects, was more immediate, perhaps telephone, support not available in the event of an episode?
The Minister of State, Department of Health (Norman Lamb)
I congratulate my hon. Friend the Member for South Thanet (Laura Sandys) who has worked with my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan). Together they present a powerful case, and I join everyone in thanking my hon. Friend the Member for South Thanet for everything she has done in this Parliament. She will be very much missed, and her case today was all the more powerful because she has epilepsy and can speak with authenticity. What she said about stigma is right—I see it often in mental health, and it is exactly the same issue in this debate. The fact that not long ago someone with epilepsy could not marry is an extraordinary reminder of what we have been up against. This debate is timely and gives everyone the chance to focus on the condition and on how we can improve the lives of those who have epilepsy. I am pleased that the baton will be passed to the hon. Member for Walsall South (Valerie Vaz), who I am sure will ably continue to articulate the case for people who suffer from epilepsy.
The debate has been marked by reference to two tragedies involving young people, and my hon. Friends the Members for Wycombe (Steve Baker) and for Cheltenham (Martin Horwood) spoke incredibly movingly about the dreadful cases involving Jessica and Emily. We will all agree that we owe it to those two girls to do everything we can to improve the experience of people with epilepsy, and to avoid tragedies of that sort happening. It is important to raise awareness, not only among the public but among clinicians, of the condition and how best to respond to it.
I pay tribute to the work of organisations involved in campaigning and research into epilepsy. The Epilepsy Society is based in the constituency of my right hon. Friend the Member for Chesham and Amersham, and Epilepsy Action in Leeds is close to the constituency of my hon. Friend the Member for Leeds North West (Greg Mulholland). Young Epilepsy has also been mentioned, as has the important work done by SUDEP Action. I remember meeting its members when they were establishing the register, and, as my hon. Friend the Member for Cheltenham made clear, it has the potential to provide incredibly rich data and evidence to help us understand why sudden unexpected deaths occur, and how we can prevent them from occurring in the future. All those organisations are doing incredibly important work.
The hon. Members for Vauxhall (Kate Hoey) and for Easington (Grahame M. Morris) mentioned discrimination. They will understand that I cannot comment on an individual case—I am an ex-lawyer and cautious about these things—but the important point about combating disability discrimination, including for epilepsy, cannot be overstated. Where there has been discrimination, it is incredibly important that there are consequences and that lessons are learned to avoid such things happening in the future.
I cannot begin to do justice to all the important points raised in this debate, so I undertake to write to all hon. Members who have taken part and to respond on important points such as co-commissioning laser ablation treatment, which was mentioned by my right hon. Friend the Member for Chesham and Amersham, as well as many other issues.
Norman Lamb
I am certainly happy to explore that, although the hon. Lady will understand why I cannot get involved in the case.
The Government are committed to securing high-quality outcomes for people in England living with epilepsy, whose number is currently estimated at more than 450,000. There are many different types of epilepsy seizure, and although some patients have the condition from birth, others become epileptic later in life. For the majority of people with epilepsy, the condition can be well managed—my hon. Friend the Member for Leeds North West talked about the experience of people in Leeds and the excellent care provided by hospitals there—and they can lead independent and healthy lives. As such, the provision of services for these patients is the responsibility of local commissioners, who are best placed to manage services for local populations. It is critical, however, that those who require more specialised care can access the right services and treatments, which is why NHS England commissions such services nationally. That need not be undermined by co-commissioning with local areas.
The Government recognise the importance of ensuring that patients with suspected epilepsy are diagnosed swiftly and accurately. As most people will be aware, seizures are the main symptom of the condition, and it is common practice for anyone who has experienced such seizures to be referred for assessment by a specialist. Neurological conditions such as epilepsy are part of the generalist undergraduate medical curriculum and a component of GP training. As such, GPs should be able to manage, monitor and appropriately refer the epileptic patients in their care. In secondary care, there are nearly 2,000 full-time equivalent neurologists, and for 2015-16 Health Education England has made a commitment to invest in 217 neurological specialty training places. In addition, specialist epilepsy nurses should be a key element of both routine and specialist neurological care, as set out by NICE and NHS England respectively. I know that my hon. Friend the Member for Southend West (Sir David Amess) has concerns in his locality, but it ought to be part of the picture in each area.
To support clinicians in the management of this condition, NICE has published a guideline setting out best practice on the diagnosis, treatment and care of patients. The guideline recommends that referrals for patients with suspected epilepsy are urgent, with patients being seen within two weeks, if possible. I think that the hon. Member for Vauxhall mentioned a wait of two months. That is not acceptable and should not happen, and the local organisations responsible for the delays should be held to account. If it is possible in other areas of the country, it ought to be possible everywhere.
In addition, if seizures are not controlled or diagnosis is uncertain, people should be referred to a specialist service within four weeks. Most people with epilepsy can have their condition successfully controlled with anti-epileptic drugs, and there are more than 25 types of drugs with which to achieve seizure control. The NICE guideline makes it clear that treatment should be individualised according to the seizure type, epilepsy syndrome, co-medication and life style. On the point made by the hon. Member for Erith and Thamesmead (Teresa Pearce), women with epilepsy wanting to conceive must—absolutely must—be given accurate information and counselling about medication such as sodium valproate. That is critical. I mentioned that the Department was considering the possibility of a red flag system, and I hope it will be possible to achieve that.
For some people with more complex conditions whose epilepsy is more difficult to control, other procedures, such as surgery or vagus nerve stimulation, might be appropriate. Patients whose epilepsy is particularly difficult to treat may be referred to a specialist neurological care provider. In particular, children with epilepsy should be considered for specialised care at an early stage, because of the developmental, behavioural or psychological effects associated with suffering from continuing seizures.
In conclusion, this has been an incredibly important debate, and I will do everything I can to follow up all the important points raised.