Epilepsy

Paul Flynn Excerpts

Tuesday 29th November 2011 Westminster Hall

[Paul Flynn (Newport West) (Lab)]

It is a pleasure to serve under your chairmanship for the first time, Mr Scott. I warmly congratulate my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) on obtaining this debate and on his splendid contribution, which covered the ground of all the campaigning groups working on behalf of those with epilepsy.

It is a great pleasure to follow the most important and worthwhile speech that will have been made in the House today, whatever happens in the Chamber. It is enriching for us to have the hon. Member for Blackpool North and Cleveleys (Paul Maynard) in Parliament. We are not members of the same party, but I will happily embrace him as a friend and call him such. Hearing at first hand from those who suffer from illnesses or disabilities is of enormous value to us. There is nothing better than to hear from the hon. Gentleman about the simple changes that might be necessary, such as blunting sharp corners and taking simple precautions, to avoid the tragedies that occur all the time. I welcome his presence in the House. If this House is to restore our greatly damaged reputation—it is of profound importance to us all that we win back the trust and confidence of this country—we need more Members such as the hon. Gentleman with experience that can give us diversity. The House must become more representative of the nation in every way.

My reason for speaking in this debate relates to a matter involving two constituents and lifelong friends of mine, Gwyn and Gill Thomas. I knew one of their daughters, Rhian, throughout her brief, radiant life. Her parents were devoted to her. On a visit to Florida, the place where Rhian was happiest, she died suddenly during the night. There was no warning or expectation, and Gwyn and Gill were left shocked, as would we all at the untimely death of one of our children, and bewildered by what had happened. As in many cases when a family experiences terrible grief, they have become enthusiastic campaigners to ensure that no one else suffers in the same way as they have suffered. They wish to avoid this being repeated in other families—a strong and understandable reaction. My hon. Friend the Member for Birmingham, Selly Oak has mentioned the concerns, and I have heard about them first-hand in the House from other parents who have lost young people in similar circumstances.

Channel 4 covered the case of the Casey and Ilia fatalities, which involved two families who suffered in a similar way. Erin Casey was aged 19 and Christina Ilia was aged 15—one a university student and the other a schoolgirl. The sheriff concluded that, had Erin been told of the risk of sudden unexpected death in epilepsy, she might have picked up her prescriptions and complied more with her medication—she might not have died. Had there been supervision in the form of nocturnal devices, which have been discussed, Erin might have wanted them and might not have died. On the death of Christina, the sheriff found that, had she and her parents been told of the risk, they would have discussed and considered the possibility of providing night supervision, possibly by use of alarm. If Christina had had such supervision, she might not have died during the night. The judge recommended that there should be a discussion of SUDEP in order to reduce the risk at diagnosis, unless there was serious harm to the patient. The timing of the discussion should be deferred, but needs to be planned. The role of a specialist epilepsy nurse is vital, and the failure of the authority to provide a specialist nurse service was viewed as contributing to the death. Those points were well made in the television programme and must be of concern to us all.

My hon. Friend has given a list of the possible remedies—drugs and how they should be used, and the existing advice—that appear to be available. Part of my constituents’ additional agony as a result of their bereavement is that they were not informed of many of the things that they have heard about since Rhian’s death. They want to go out and make sure that everyone else is aware of the possible remedies that could avoid such tragedies in the future. As with many other subjects discussed in the House, my views on this issue are the result of constituents’ problems. I thank the persistence of the campaigning of my constituents and all others who are determined that everything possible is done to avoid these unnecessary deaths.

--- Later in debate ---

[The Minister of State, Department of Health (Paul Burstow)]

I, too, am pleased to serve under your chairmanship, Mr Scott. I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing the debate and on being so persistent in applying for it week after week until, finally, being successfully in the ballot for Adjournment debates. The hon. Gentleman is right to bring the matter back to the House for a debate and I am grateful to all hon. Members who have contributed. The personal testimony and the testimonies we have heard on behalf of constituents speak to the devastation that the condition can bring to families and the people who suffer from it.

A lot of statistics have rightly been rehearsed to illustrate those points as part of today’s debate. They are undoubtedly very compelling and, as has rightly been said, quite depressing. They show that although we have known for a long time what needs to be done, it does not appear to be implemented as consistently as it should be across the country. There are places that follow the NICE guidelines and consequently make a difference, but over many years other areas have failed to invest or see the matter as an area of priority. That is not a comment on previous Governments’ records, but an acknowledgement of the difficulty in an organisation as large as the NHS of ensuring sufficient focus on something as important as this.

The hon. Member for Hackney North and Stoke Newington (Ms Abbott) paid tribute to the work of the all-party group on epilepsy. I come across many APPGs in pursuing my ministerial responsibilities; they are, truly, an important part of how this Parliament makes sure that the voices of many seldom-heard groups—or groups certainly not heard often enough—are heard by Ministers and the Government.

I will try to ensure that I respond to all the points that have been made. I have been encouraged to speak for as long as is necessary to do just that.

[Paul Flynn]

Will the Minister give way?

[Paul Burstow]

There is an objection to that point. I give way.

[Paul Flynn]

Members have, very generously, given the Minister 40 minutes to reply to the debate, which is rather longer than Ministers usually have. Will he find time in that 40 minutes to commit to the practical, affordable remedies that have been urged on him by the many charities involved in SUDEP?

[Paul Burstow]

I hope to do just that, and I hope to do justice to the points that the hon. Gentleman and other hon. Members made in the debate.

At least one hon. Member—my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard), who initiated the debate we had about a year ago—has contributed to the debate on this issue again. The message I took from last year’s debate was clear, and I take it again today. There is a real sense that we need change in the system. We need change that delivers a real focus on issues such as epilepsy to ensure that clinicians and the service respond properly to the evidence, act on the evidence, and translate it into services that are fit for purpose. At the moment, the service continues to fail hundreds of thousands of people living with epilepsy, at a huge cost to them personally and to their families. When we debated these issues a year ago, there was some uncertainty about how the Government’s plans for reform would deliver improvements. I would like to spend a little time today setting some of them out.

--- Later in debate ---

[Paul Burstow]

It was kind of the hon. Gentleman to intervene, because it allows me to answer his final question. The Department continues to work with the charities and to discuss their concerns, and I am happy to arrange a meeting to have such discussions.

[Paul Flynn]

rose—

[Ms Abbott]

rose—

[Paul Burstow]

I will give way to the hon. Gentleman while the hon. Lady frames her questions—she clearly has one or two—and I will then give way to her.

[Paul Flynn]

I have listened with great attention to the Minister. I am aware of his record in opposition as a doughty campaigner for many causes. The Government are obsessed with change and upheaval in health service structures. Can he provide some practical assurance that by the end of their term of office, if they go to 2015, there will be fewer sudden unexpected epilepsy deaths?

[Paul Burstow]

I have referred to the focus on outcomes and the establishment of an outcomes approach not just to commissioning services, but to how we measure the performance of services. That provides hope of an improvement. The issue is not just a high-level one. I have not talked about specific statistics today, but sitting behind each and every indicator in the outcomes framework for the NHS are hard metrics that are being used to identify variations between parts of the country. We have seen in other services—for example, cancer services—how powerful the publication of atlas data, which shows performance in different localities, is at challenging clinical teams and challenging commissioners to commission differently and better. I genuinely believe that that approach and the focus on outcomes and data are key drivers to improving future performance.