Epilepsy

Steve Baker Excerpts

Thursday 26th February 2015 Commons Chamber

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

It is an honour to follow the hon. Member for Vauxhall (Kate Hoey), and I hope that she obtains justice for her constituent. It is also an honour to follow my hon. Friend the Member for South Thanet (Laura Sandys). As I said earlier, she will be a great loss to the House, and I am personally sorry that she is leaving this place because I think she has added a great dimension to it, particularly on the subject of epilepsy.

I declare an interest because the Epilepsy Society is based in my constituency and I am proud to be a vice-president. It has been working with and for people affected by epilepsy for 123 years. Although the detail of its aims and objectives have altered over the years, fundamentally it remains true to the vision set out by the group of philanthropists and neurologists who established it in 1892—to cure, treat and prevent epilepsy. It is unique.

At the Epilepsy Society’s Chalfont centre, groundbreaking epilepsy research laboratories are co-located with England’s only dedicated epilepsy assessment and treatment centre. Led by medical director Professor Ley Sander and head of genetics Professor Sanjay Sisodiya, some of the world’s pre-eminent epilepsy researchers and clinicians undertake research and clinical practice at the Chalfont centre. The Epilepsy Society’s researchers have been central to new scientific discoveries, in particular research that demonstrates the breadth of genetic influences in epilepsy. The society also brings together state-of-the-art diagnostic tools for epilepsy in one place, including the UK’s only dedicated epilepsy MRI scanner and a specialised epilepsy therapeutic drug monitoring service that is provided to hospitals across the UK and Europe.

The Epilepsy Society is also part of a unique three-way partnership with the NHS and with academia—the national hospital for neurology and neurosurgery at University college London—that has the benefit of translating research into clinical practice, providing access to funding, attracting top researchers and clinicians and providing the flexibility to innovate. The partnership has been recognised by the World Health Organisation.

[Steve Baker (Wycombe) (Con)]

My right hon. Friend has taught me something today—I did not know that my constituency was adjacent to such a fantastic centre. Will she confirm that it is a national centre serving a population wider than just our constituencies?

[Mrs Gillan]

That is absolutely right—it is a national centre.

Under our new chair, Helen Pernelet, and the new chief executive, Angela Geer, the Epilepsy Society has an ambitious new vision to leverage its medical research strength to revolutionise how epilepsy is diagnosed and treated. Of course, there are issues facing the society’s specialised medical and research facilities, but sadly, with only eight minutes in which to speak, I might not get through them all. For the Minister, there are co-commissioning concerns. Under the Health and Social Care Act 2012, the responsibility and budget for specialised services were brought together in NHS England as the sole national commissioner of specialised services, but since May 2014, it has U-turned on national commissioning. Instead, the new proposals for co-commissioning would see responsibility for the vast majority of specialised services shared with local clinical commissioning groups.

The Epilepsy Society is opposed to the co-commissioning of specialised epilepsy services for several reasons. NHS England asserts that national service specifications will continue to apply to co-commissioned specialised services, but it is uncertain how that will be achieved, given that CCGs are independent bodies. If CCGs are allowed to reinvest savings from specialised commissioning in other areas of their budget, it might create an incentive to underspend on specialised services, raising questions about the level of investment. There is also evidence that CCGs are not in a position to engage with specialised commissioning in areas such as neurology. For example, the Minister will know that the Neurological Alliance’s recent report, “The Invisible Patients”, found that only 26% of CCGs had assessed the prevalence of neurological conditions locally and that only 14% had assessed the cost of neurological services.

I also wish to highlight the Epilepsy Society’s opposition in principle to the introduction of a marginal rate in specialised commissioning and its concern about the lack of clarity in neuroscience specification. There is an ongoing lack of clarity over the division of responsibility between NHS England and CCGs for commissioning neurological services, and there is continued confusion about precisely which services fall under the scope of specialised commissioning arising from inconsistent statements in the manual for prescribed specialised services and the neurosciences service specification. I hope that the Minister can respond to the society’s calling on NHS England to clarify this important service specification to ensure nationally applied standards for specialised epilepsy services.

I encourage the Minister to improve access to the Government’s flagship 100,000 Genomes Project. It is an exciting development that the Epilepsy Society strongly supports, but the project’s focus is largely on cancer and rare diseases, making it unlikely that more than a handful of epilepsy genomes will be sequenced as part of the groundbreaking initiative, despite the huge potential that genome sequencing has for transforming epilepsy. I would like to see the Government continue to invest in genetics research and its translation into clinical practice and to ensure that it benefits patients with epilepsy, but I would particularly like to see the genome project embrace epilepsy.

The need to reform the current system for accessing effective medicines will become ever more important in the context of increasing the availability of personalised medicines. I have been working locally with Daiichi Sankyo on patient access to novel oral anticoagulants, and there is a gap that the Department of Health needs to address across the board.

In my remaining minutes, I would like to draw attention to the issue of laser ablation surgery. I have recently dealt with a distressing case of a constituent who sadly lost a family member to epilepsy. The constituent expressed great distress that a surgical treatment known as laser ablation therapy had not been made available to her and her child as a treatment option. Laser ablation is a relatively new surgical technique that burns away accurately targeted tissue with a surgical laser. The technique is much less invasive than traditional brain surgery, and enables surgeons to operate deeper in the brain. It is also much more accurate and carries fewer risks of complication. Laser ablation can be a good choice for patients who have few other treatment options either because medication does not control their seizures or because the lesions in their brain that cause their epilepsy are deep and hard to reach using open brain surgery.

A significant minority of epilepsy patients—approximately 12,500 in the UK—would benefit from surgical treatment, including laser-guided surgery. In around 60% of these cases, surgery can be curative. Evidence shows that it also contributes to reducing premature mortality in epilepsy. Sadly, despite these benefits, only around 300 patients a year are currently given this treatment. I think that the Department of Health should urgently review the number of patients with access to neuro-surgery each year, particularly surgery that uses the new and less invasive techniques such as laser ablation.

Finally, I mentioned the connection with autism, to which my hon. Friend the Member for South Thanet responded during her opening speech. It is obvious that although we have made great strides on epilepsy since the days when epileptics were not allowed to marry, we still have a long way to go. I hope that the Minister will respond positively to the questions raised on both sides of the House about the future of epilepsy in the hands of the NHS.

--- Later in debate ---

[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?

[Mrs Gillan]

Among other things, I sit on the Public Administration Committee and we are responsible for the health ombudsman. Will my hon. Friend make sure that the details of this case are passed to the Committee and to the ombudsman, because we are looking into how complaints are dealt with and how we can learn for the future from such tragic experiences?

[Steve Baker]

I am extremely grateful to my right hon. Friend. I have already passed the details to the Minister. I am aware of the inquest and the NHS investigation, but I will certainly take her advice and give those other bodies the opportunity to investigate.

That brings me on to the specific issue of consent. I have spoken to Mr and Mrs Monks today and they say that at no point was it explained to them that this medication could have these side effects. Jessica was 17 when she started taking it, and I feel that that possibility really should have been explained to her parents. They should have had the opportunity to take very strong action. Of course, they did take very strong action—they took the strongest action they could—and it seems to me, without wishing to pass judgment, that the key problem was that they could not get hold of the neurologist.

[Dr Julian Lewis (New Forest East) (Con)]

I am puzzled that the instructions that came with the medication did not include a warning that if someone had those sorts of side effects, they should cease taking it.

[Steve Baker]

I am a layman, but one of the things I have learned today is that one cannot simply cease taking medication for epilepsy, so specialist advice is required.

[Laura Sandys]

indicated assent.

[Steve Baker]

I am grateful to my hon. Friend for acknowledging that. Put simply, it seems that the epilepsy medication, which was necessary, caused psychotic side effects, which were exacerbated by anti-depressants that were prescribed with the best intentions. Jessica therefore spiralled into the situation that tragically led to her death.

I would like to finish with a few words from Jessica’s parents, who have written to me:

“The sudden and tragic death of our otherwise healthy and happy teenage daughter has caused devastation throughout our family and local community. We strongly feel that this situation could have been avoided if we were given the correct advice and prompt treatment and are committed to ensuring the same mistake does not happen to another epilepsy patient.”

Susan and Steven Monks have been robbed of their daughter and of all the future opportunities, hopes and dreams for which she stood. They deserve to know why and what will be done about it.

--- Later in debate ---

[Mr George Howarth (Knowsley) (Lab)]

I add my thanks to the hon. Member for South Thanet (Laura Sandys) for giving us the opportunity to debate this important issue. I wholeheartedly endorse hon. Members’ comments that she will be missed in the House. Her speech was not only informative but unique, because in the many years I have been in the House, I have never before heard a Member declare themselves to be both a law-maker and a law-breaker. Even more alarmingly, she declared her intention to become a repeat offender. Her speech was also unique in that it brought before the House the experience of people who suffer this condition, and she gave us the opportunity to understand more about its dimensions.

I need to say a word about the speech made by the hon. Member for Wycombe (Steve Baker), in which he described a tragic case. Anyone who has experienced the loss of a child knows exactly the depths of misery that the people concerned will have experienced. The hon. Gentleman dealt with a difficult subject in not only a suitably moving way, but with great dignity, and I, too, pass on my sincere condolences to the family.

[Steve Baker]

I am extremely grateful for the right hon. Gentleman’s kind words. I know that the family have heard him and will also be grateful.

[Mr Howarth]

The hon. Gentleman’s speech highlighted a more general point about how chronic conditions are dealt with. I have some knowledge of type 1 diabetes. When someone with that condition reaches a crisis, whether that is a psychological crisis or something that should be dealt with by a diabetologist, they cannot always get to see the right people at the right time so that they can get the right support, prescription or advice. Brilliant though our national health service is, that is one aspect that all too often breaks down, so I hope that the Minister will address that problem.

I want to concentrate on a particular issue, which I do not think has been mentioned, about which one of my constituents has contacted me: how the benefits system makes life very difficult indeed for those people who find themselves on benefits. No doubt the Minister will not be able to respond to my points, but I hope that he will pass them on to his colleagues in the relevant Department.

My constituent, who has asked to be named, Mr Adam Lane, who lives in Huyton, said:

“In regard to my DLA claim I had to go through 6 months with no money for myself, my wife and my two-year-old son. At that time we had to live on £50 a week until I went to a tribunal and won. Now I have to go through the whole process again on 13th of March for PIP. I have a letter from my epilepsy doctor stating how bad my epilepsy is. I fall and convulse without warning and have seriously damaged my knee, and have panic attacks throughout the whole experience. My seizures are occurring every week now and are very serious and now I suffer with migraines where I vomit 14 hours a day and I’m confined to bed through the process for 2 weeks at a time. I’m hoping Atos will not brush me off like last time, hoping to appease Government numbers to get people off benefits. I feel I am in need of benefits. I cannot work with my health conditions. My wife is my carer 24/7. My son has been traumatised though watching my seizures. I’m hoping my Atos interviewer sees what is in front of their eyes and not what the Government want them to see and say. Please, for others out there like me, let there be a way for people who do not abuse the system to be given a fairer crack of claiming what is deservedly theirs. Thank you.”

I thought it was worth reading that out in full because it gives a very clear picture of how this man has had to struggle to keep his family together and to support them in extremely difficult circumstances, where the benefits system seems to mount up against him to prevent him having any kind of reasonable life. I hope that such cases—there are many more of them out there—give the Government cause to think again about how people with chronic conditions are dealt with in the benefits system.