Today was a difficult occasion.
There has been a major increase in the numbers of young people suffering unexpected deaths from epilepsy. Charities insist that practical affordable measures can be taken to reduce the numbers of these tragedies. Epilepsy Bereaved provide support and advice. Their contact details are
www.sudep.org 01235772852
support@eb-team.org.ukA family in my constituency suffered an epilepsy bereavement.
Paul Flynn (Newport West) (Lab):
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.
Paul Burstow The hon. Member for Newport West (Paul Flynn) talked about his constituents Gwyn and Gill Thomas, the tragic death of their daughter from SUDEP and how they felt bewildered and, I suspect, outraged that they did not get information on which they could have acted at the time. That has spurred them on, and we can probably find echoes of that in every constituency surgery throughout the country—people motivated by personal experience to ensure that it happens to no one else. The hon. Gentleman’s example of the case of Rhian and the lack of knowledge of risk underscored the as-ever exceptional contribution of my hon. Friend the Member for Blackpool North and Cleveleys to today’s debate. By talking about his own experience, he illuminates a much wider and more important picture about the frailty of human beings and their reluctance sometimes, even when professionally trained, to engage in the conversation that they are paid to have, which ultimately is a conversation about life or death. We know that NICE has set out clear guidance on care planning and case management, which provides good evidence of how they can make a difference.
Government backs tyrants' freebies.
Three Tories went on a £25,000 trip to Equatorial Guinea at the invitation of a lobbyist. They described this awful countries human rights breaches as 'trivial'. One of them seems proud of his gullibility.
4. Steve Baker (Wycombe) (Con): What assessment he has made of the implications for the governance of Equatorial Guinea of the recent constitutional referendum in that country. [83286]
The Parliamentary Under-Secretary of State for Foreign and Commonwealth Affairs (Mr Henry Bellingham):We do not have an ambassador based in Equatorial Guinea, but we have an ambassador based in Cameroon who visits regularly and takes a close interest in developments there. He often raises directly issues such as human rights, good governance and lack of social development. We also raise those issues through the EU and the UN.
Steve Baker: As the Minister knows, hon. Friends and I published an excoriating report after our visit to Equatorial Guinea in the summer. Does he agree that certain principles of good governance, such as democracy, liberty and the rule of law, are universal and eternal?
Paul Flynn (Newport West) (Lab): May we assume from the Minister’s reply that the Government’s policy now is to encourage contacts with countries with records on human rights as despicable as that of Equatorial Guinea, and that hon. Members should accept private invitations for five-star business class visits paid for by the Governments?
Mr Bellingham: We have full diplomatic relations with Equatorial Guinea. We never hold back in telling that Government about our concerns regarding human rights and lack of good governance, and we have made it clear to the Government of Equatorial Guinea that they have a per capita income of $15,000 a year, yet that masks extremes of wealth between the very rich and the very, very poor. I welcome hon. Members going there with an open mind and reporting back to us.
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