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“The central story of this report is that this robust system of regulation was not, in respect of the Society, implemented appropriately—that is, consistently, fairly, and with proper regard to the interests of those directly affected”.
All of us who are present today, as well as the 200 or so members of the all-party parliamentary group, recognise that the ombudsman herself saw that the regulatory framework had failed, and we understand the financial challenges. However, the reason we are here, and the reason the all-party parliamentary group, with the support of EMAG, has not stopped lobbying and campaigning throughout the current Parliament—I was privileged to become its secretary literally within weeks of being elected in 2010—is that this is a matter of not just probity, but honour. The regulator failed, and this was Government regulation.
Mr Mark Williams: My hon. Friend is right to say that it is a matter of honour, but it is also a matter of urgency. He is making his case in a very modest way. May I invite him to endorse what was said earlier about the urgent need to settle individual claims—I think that the figure we heard was £115 million—and to address the issue of elderly people whose cases may well not be settled before they die unless we act now?
Stephen Lloyd: My hon. Friend is absolutely right. A number of people are now reaching an age when something needs to be done extremely quickly. A constituent of mine, Billy Murphy, a variety artist for 70 years, had been lobbying me patiently, and I had been supporting him, until he sadly passed away in January. He had been making contributions for many years, and he was a very good example of the people to whom my hon. Friend and many others have referred: decent, hard-working people who were prudent and put money aside. Those people have lost out, not because of their own inadequacy —not because they took a punt, or played the stock market—but because they invested in a well-established and respected pensions company that was regulated by the Government. It was regulated by the Government: that is the whole point, and that is why we as a nation, whichever Government are in power, have a real responsibility to do what is right.
Chris Heaton-Harris (Daventry) (Con): I am a former Equitable Life policyholder myself. I had a company pension policy. I distinctly remember questioning the person who sold me the policy about how Equitable Life was regulated, and being told that there was no chance of its failing because it was acting well within the regulations that existed at the time.
Stephen Lloyd: That is a very important point. The whole system—from the perspectives of finance, prudence and proper rule of contract law—fell apart under Equitable Life. It completely collapsed. When something like that happens in a country like the United Kingdom, the duty of the Government, irrespective of some of the broader issues, is to provide proper compensation, because otherwise the whole fabric becomes extremely vulnerable.
I find it bewildering that none of the senior managers of the old Equitable Life—and none of the people who were in charge of the marketing side or the investment side—went to jail. If I, as a Member of Parliament, find
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that bewildering, I can imagine the profound frustration that so many of our constituents must feel, given that they were doing the right thing. This was a company that was regulated, regulated within an inch of its life—that was the whole point of the sector—yet, through no fault of their own, it collapsed, and, a few years later, the parliamentary ombudsman said that there had been a systemic failure of regulation. All those senior managers and executives, whom we all knew, must have been aware of what was happening.
I greatly appreciated what was said earlier by the hon. Member for Stretford and Urmston (Kate Green). When she bought an Equitable Life pension which she kept for a few years, all the marketing suggested that the company was rock solid and the purchase almost a steal. She was told “You really must invest in this.” Those people must have known what was happening, and I fail to understand why they were not penalised.
Geoffrey Clifton-Brown (The Cotswolds) (Con): My hon. Friend is putting his case very articulately. When Mr Ralph Williams, along with a large group of my constituents, came to see me about this whole matter, one of the points that they made most strongly was that they were nearly all elderly. According to a parliamentary answer that I received on 10 February, only £990 million of the £1.5 billion total has been paid out. The Government are profiting from people who are dying at this very moment. Is it not only fair for everyone, including the annuitants, to be paid whatever the Government have agreed, in full, now?
Stephen Lloyd: I thank my hon. Friend for his powerful intervention, and I look forward to hearing what the Minister has to say in response to it. People are dying: there are no two ways about it, because of the age profile.
Another constituent of mine, David Stevens—a distinguished teacher for many years in Eastbourne, a former mayor and, as it happens, a Conservative councillor, who is also a very decent chap—lost out hugely in the Equitable Life debacle. He lost just under 80% of the worth of the pension in which he had invested for all those years.
This issue is about real people. That is why we are here, and why the all-party parliamentary group receives so much cross-party support. It is not just that we all know many constituents who are suffering and have experienced a profound loss despite having done the right thing, and despite being led to believe that the industry was heavily regulated. As I stressed at the beginning of my speech, I have believed—as others do—that this is a point of honour ever since I was elected in 2010, which is why I joined the all-party parliamentary group.
In a civilised country like the United Kingdom, people are often rightly encouraged to save and be prudent so that they are less of a burden on the general taxpayer. Hundreds of thousands of people did that on the basis of an absolute assurance that this was a properly regulated industry, and then lost out through no fault of their own. I have always believed that senior figures in the Treasury must have known that Equitable Life was wobbly, but many people have received 80% less than they should have received, and that is unacceptable.
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I was delighted to speak today. I hope that both the Government and the Opposition will provide some succour.
Mr Deputy Speaker (Mr Lindsay Hoyle): Order. Unfortunately, I must reduce the speaking time limit to six minutes. If Members really must intervene, by all means let them do so, but I ask them to try not to use too much time. We need to move on to the next debate sooner rather than later.
2.8 pm
Mr Geoffrey Robinson (Coventry North West) (Lab): I shall confine myself to the reduced speaking time, Mr Deputy Speaker, and in doing so, I shall pay only short tributes to those who have secured this timely and necessary debate. I believe that my hon. Friend the Member for Leeds North East (Fabian Hamilton) has followed this issue—as I have followed similar issues—through several Parliaments, and that the hon. Member for Harrow East (Bob Blackman) has, in a very determined and concentrated fashion, made it a priority since his election on the basis of a very strong campaign on the subject.
Several aspects of this issue must make us uncomfortable. We can all respond, in a way, to the emotive interjection of the hon. Member for The Cotswolds (Geoffrey Clifton-Brown), who called for immediate full payment and said that there was no alternative. That makes us all feel very good. However, I wonder what impact the debate will have on the many pension holders who are wondering whether we can improve on the present situation. We must not, as my hon. Friend the Member for Stretford and Urmston (Kate Green) made clear, give false hope. We are dealing with recalcitrance in the machinery of government and although we are entirely rightly approaching this on an all-party basis, which it is important for us to maintain, it is clear that for some reason, although there is a will to do this among Ministers it is held up because the machinery of government initially does not want to admit guilt, and at a later stage has to constrain things and uses the grounds of the public purse to do so. That will happen whatever state the public purse is in: other priorities will rank higher and there will be other things we need to do. We will be told we must look to the future and, above all, we must not create precedents. I say to the Minister and my right hon. Friend the Member for East Ham (Stephen Timms), who was a Minister, that they will find that the roadblocks put up by the machinery of government are almost insuperable. However, I believe that there is a way through in this case.
Many Members have referred to the Penrose committee and to the ombudsman’s report. There was a very clear statement, the like of which I do not think I have seen in my time in the House, about a total and comprehensive failure of regulation. There are no ifs, no buts and no extenuating circumstances, just an admission of failure and of incompetence on the part of Government that should be put right. I believe that it can be put right and think that there is a measure for doing so.
The great thing about this debate is that there is no doubt about the figures. I cannot see anybody disputing the figures, not even the Treasury. The total is £4.3 billion
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and the Government have pledged £1.5 billion. Without damaging the present deficit, £115 million would enable us to deal with the most chronic, the most aged and the least well-off of the pension holders. They could be dealt with straight from the contingency of about £100 million that is committed in the Government deficit, as is the total £1.5 billion. That is all in the deficit—it has to be for the Government to commit it. In my day, a commitment to spend counted as expenditure in the year it was committed, not in the year it was paid out. That might have changed, but it is a commitment and it will have been taken into account in the Budget this year. In my opinion, the whole amount could have been taken into the year in which it was committed and future Government projections will certainly all have it in.
Without any effect on the Government deficit, we could pay off the clearly identified with £115 million straight away and we could look at the as yet unspent £500 million. That would make a big start, although it would not go all the way. I share the emotion expressed by the hon. Member for The Cotswolds and could speak about it with the same intensity as he did, but the fact is that £500 million is there. There is £115 million to deal with the worst cases. Let us get that paid out. I agree with the hon. Member for Harrow East—this seems very much to be his idea—that we should have it in the party manifestos. There might not be great hope of that, but why not try? I will certainly support it with my party and I am sure that he will with his. I am not sure what success we will have, but we should support that.
Beyond that, we are dealing with a further £2.3 billion. I do not think that we should consider a time period of any more than three years. We must be precise, so that unlike with the contaminated blood scandal, when the Government could sit back and say that having caused those people’s deaths they would die sooner or later, this does not become a terminal problem. We cannot wait that long. That money should be timetabled, committed and spent within three years of the new Government taking office. That is a proposal on which I think we can unite. We could bring most policy holders into it and it is doable.
2.14 pm
Robert Neill (Bromley and Chislehurst) (Con): I, too, congratulate the hon. Members who secured the debate. Like my hon. Friend the Member for Harrow East (Bob Blackman) and the hon. Member for Leeds North East (Fabian Hamilton), I have signed the pledge. This is not a phrase that often falls from my lips, but that was the right thing to do under those circumstances and it is right for Governments to keep their pledges. I know that there are constraints in Government and having served as a member of this Government I am conscious of the economic pressures, and I understand the point made by the hon. Member for Coventry North West (Mr Robinson) about the fact that periodically civil servants come to Ministers with rather convenient escape clauses, but the job of Ministers is sometimes not to accept such escape clauses.
I am speaking on the basis that this is a Government who are committed to markets and to stability and confidence in our markets. I believe in that. The financial services sector and insurance sector are a critical part of
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our markets. I speak as secretary of the all-party parliamentary group on wholesale financial markets and services. For the markets to work efficiently, there must be proper and secure regulation and when there is a failure in regulation there must be genuine certainty of recompense to those who have done no wrong, because otherwise honest and sensible investment is deterred. That is the risk if we do not do justice to the Equitable Life policyholders. What message would that send? We all say that it is right to invest prudently and wisely for one’s future and any such message would be against the philosophy of my Government and, I hope, against the philosophy of any responsible Government. In the long-term, it is in the interests of good economics and good financial planning that we do justice to the Equitable Life policyholders.
The motion is sensibly and moderately phrased. We are not saying that everything can be done at once, but that in the course of the Parliament this ought to be done. It might be that the proposal made by the hon. Member for Coventry North West is part of that. I will not be tied to an exact time frame, but it is particularly important that the oldest—the pre-1992 people—are given priority. It is also important to recognise that although the Government are picking up something that did not happen on their watch, part of being in government is that one has to deal with the consequences of what one inherits and has to do so fairly. Happily, thanks to the policies of this Government, the economy is improving. It is not unreasonable against that background to expect those people who have made a sacrifice, in that their fair recompense has been delayed, to share some of the fruits of that economic recovery.
Mr Robinson: I know that the hon. Gentleman did not mean to interject any sort of difference between party or Government, but what he said was not right. The lack of regulation and the failure of the policies happened under a Conservative Government’s watch. We must get away from mentioning Governments, as this affects all parties and all Governments over the period of the failure.
Robert Neill: I am sorry to disagree with the hon. Gentleman, but he misunderstands what I was saying. Regardless of party, there is an obligation on Government, and I must say that the 13 years for which there was a Government of which he was a distinguished member cannot be entirely ignored. We all must pick up what we inherit from our predecessors, of whatever party, and we must put them right. That is the key and that is why I agree that having done the history we need to move on and find a sensible way forward.
Stephen Lloyd: One of our profound frustrations was that the ombudsman made the ruling under the previous Government, which was sitting on a heck of a lot more money than this Government.
Robert Neill:
My hon. Friend makes an entirely fair point. This should all have been sorted out before the Government came on to the scene. The question of who was to blame and why ultimately requires almost a Crichel Down sort of approach—we must all accept responsibility for what happens under regulators who
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were not politicians. We must accept that it was done and must now resolve it. Had it been resolved sooner, there might have been more money around to deal with the issue. However, given where we are now and that the economy is improving, we can certainly do justice to people through a sensible series of staged payments, starting with those who are in the greatest need and who are most vulnerable. It is reasonable to ensure in the course of the Parliament that proper justice is done.
Let me give a sense of the impact on individuals. I have one constituent who makes the point that having invested sensibly his income has effectively been cut by some £20,000 a year. To a pensioner, that is an awful lot of money and they have had to downsize from their long-established family home. Another constituent has an acknowledged loss of £61,000 and is some £47,000 adrift with the payments out. That is not fair for somebody who has worked hard and is now in no position to supplement their income for the future.
Another very elderly gentleman had to wait some 18 months—because, frankly, of ineptitude and lost correspondence—to even receive acknowledgement of his entitlement. He should not have to come to his Member of Parliament to escalate these matters. That is something that any sensible and well-run compensation scheme should deal with as a matter of course. I am sure we all hope eventually to overcome the difficulties for our constituents, but they should not be happening in the first place.
Geoffrey Clifton-Brown: I am sorry to reiterate the point I made in an earlier intervention, but one member of the group of people who came to see me was elderly and, if he dies, his widow will get only 50% of the 22% he is entitled to, which is already pretty measly. Is it not incumbent on the Government to make payments now, in full, so that at least people can have that small amount of money to pass on to their dependants?
Robert Neill: On that basis, it is particularly important that we deal with the pre-1992 people, who are generally the oldest, but it is also important to have a proper, staged programme in place to deal with everyone.
When I was a lawyer, I accepted, as I think anyone would, that it was not possible to deliver for a client everything in their legitimate claim, because money might not be available or there might be delays. A settlement would be reached and a sensible discount accepted as a resolution, but I do not think that anybody would regard 22% as being a fair settlement of a claim. The Minister is an honourable woman and she must tell us today that she recognises that we are obliged, as a matter of honour, to give the people affected a sum much closer to that of their undisputed loss. As has been said, the quantum is not in dispute—it is a proven fact. We now need to say that, because of the improvement in the economy, we can do better than we were originally able to, for whatever reason. That is the honourable and legitimate thing to do, and it would also restore faith in an important element of our financial sector.
I agree with the hon. Member for Coventry North West and I hope there is enough that we can all agree on. The wording of the motion itself gives the Government the flexibility, provided there is good will—I am sure there is—to achieve its aims in a fair way for the people who have lost out through no fault of their own.
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2.22 pm
Mr George Howarth (Knowsley) (Lab): I will be brief. I congratulate the hon. Member for Harrow East (Bob Blackman) and my hon. Friend the Member for Leeds North East (Fabian Hamilton) on giving us the opportunity to debate this issue and on the motion, which sums up the situation very well.
I want to make two points. First, I am sure others have received a similarly, or possibly identically, worded letter to that which I have received from one of my constituents, which states:
“Victims of the Equitable scandal are…incensed that savers with Northern Rock, Bradford & Bingley, Icesave, RBS, HBOS and others have been bailed out 100% while they have been left with…compensation of less than 25% of their losses.”
When I first read that statement, I was not entirely sure that it was comparing like with like, but the more I thought about it, the more obvious it became that, ultimately, the comparison is completely valid, because there was a failure to regulate all those organisations and Equitable Life properly. The right hon. Member for Arundel and South Downs (Nick Herbert) has said—this was the first thought that occurred to me—that there were macroeconomic reasons for having to bail out those organisations at the time. Even so, the comparison of the two problems that both resulted from the failure of regulation is valid.
Secondly, it has been said repeatedly that the ombudsman pointed out unequivocally that there had been maladministration. We need to think carefully about that and the implications for the whole ombudsman system if we do not accept its consequences as well as its judgment. An ombudsman system that finds maladministration and then says how it can be dealt with cannot be properly respected by the Government or anybody else unless the consequences of its findings—in this case, the costs involved—are addressed in full. It is important, for all the reasons that have already been given, that the people affected are properly compensated, but it is also important, if we are going to have a proper ombudsman system, to accept not only its findings with regard to maladministration, but the consequences of those findings.
I am perfectly content with the motion, which concludes by calling on the Government
“to make a commitment to provide full compensation during the lifetime of the next Parliament as the economy and public finances continue to recover.”
My hon. Friend the Member for Coventry North West (Mr Robinson), the hon. Member for Harrow East and others have put together, almost during the course of this debate, a package that might work. It involves using more effectively the money that is already available now and then having a programme of meeting the full costs over the course of the next Parliament. I think that that strategy provides a solution and I hope the Minister will accept that when she responds to the debate.
2.26 pm
Sir David Amess (Southend West) (Con):
I congratulate my hon. Friend the Member for Harrow East (Bob Blackman) on securing the debate and on his speech. He, together with my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), came up with a practical solution when they talked about the £115 million.
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As my right hon. Friend the Member for Saffron Walden (Sir Alan Haselhurst) has said, it would be nice if we could get some credit.
There could not be a more perfect Minister to respond to this debate than the Economic Secretary, because before she became a Minister she was a wonderful advocate on behalf of those of her constituents who have suffered as a result of the issue under discussion. I hope she is well placed to persuade her boss, the Chancellor, so that, in two weeks’ time all the hon. Members present can take some credit, not least for the settlement of the £115 million. Every Member present has constituents who are among the 945,000 Equitable Life policyholders who have suffered huge losses.
I have raised the issue many times with the Treasury and I always receive the same response, which essentially states that the Treasury has decided to pay out £1.5 billion of its £4.3 billion obligation and that the Government understand the policyholders’ disappointment, but that tough decisions need to be made due to the pressures on the public finances.
We all understand that taxpayers’ money needs to be managed and spent carefully and with the greatest consideration. However, paying out the full amount of the obligation to the Equitable Life victims is not merely about spending the outstanding £2.8 billion of our scarce resources. It is about regaining and rebuilding the public trust in the ability of our Government to create a safe environment and regulation in financial services. This is about the reputation of the British Government and financial services generally.
The problem is not going to disappear, regardless of which Members of Parliament survive the cull on 7 May. Equitable Life victims will continue campaigning and the Members who are returned here will continue to put pressure on the Government of the day to meet their obligation. The Equitable Life victims were, as we have heard, absolutely doing the right thing, working hard and paying into pension funds for their retirement. That sense of responsibility and work ethic is exactly what this Government support.
By paying only 22% of the obligation, the Government are ignoring the recommendation of the parliamentary ombudsman, as many Members have said—it is the same recommendation that was previously accepted by the Government in full. The British Government’s ignoring the parliamentary ombudsman sets a poor example for ombudsman cases across the country. If the Government do not respect an ombudsman recommendation, why would anyone do so? It sets a precedent for undermining the work of ombudsmen generally throughout the United Kingdom. The need for austerity does not need to be explained to any one of us. However, compensation for victims of the Equitable Life scandal is not something that can be subjected to cuts. My constituents have already lost enough time and nerve trying to fight this injustice and I urge my hon. Friend the Minister to honour the outstanding debt.
I want to take this opportunity to congratulate the Government on what they have done so far. It certainly was not their fault that we were left with these terrible financial difficulties, but it is not right that the role of the auditors and external consultants should go unmentioned. They should be held to account for this scandal. Ernst and Young was providing audit services to Equitable Life. The company’s bosses now say that
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they regard this to be a closed case, as the individuals responsible have now retired. However, it is very far from being a closed case and a happy retirement for our constituents who are waiting for the remaining 78% of their money to be paid out. I reiterate that this is not just about spending taxpayer’s money. It is about the credibility and respectability of this Government and of UK financial services, and about the trust in our ombudsmen system.
2.30 pm
Pamela Nash (Airdrie and Shotts) (Lab): I, too, congratulate the hon. Member for Harrow East (Bob Blackman) and my hon. Friend the Member for Leeds North East (Fabian Hamilton) on their work on this important issue and on securing the debate today. They outlined articulately the time line of the issues surrounding Equitable Life, and I do not intend to repeat any of that. More than 1 million people throughout the country have been affected by the issue, which dates back to the early 1990s. No Government between then and now have adequately dealt with the problems; they have been problems for successive Governments. However, the people who are affected do not care which party is in government; they simply want to be compensated and to feel supported by the Government of the day in getting the compensation and help that they deserve.
On Friday, I met two of my constituents who have been impacted by the maladministration of Equitable Life in quite different ways. The first was a gentleman who had cautiously saved for many years with Equitable Life. His hope, when he took out the policy, was to fund an early retirement at the age of 60. He is now approaching that age, but his hope has been dashed by the failure of Equitable Life. He managed to withdraw some of his money when the problems started to occur, but he has still suffered the loss of tens of thousands of pounds and he has been given to understand that he is entitled to no further compensation. The second was a lady in her 80s who had saved for decades but has been left with just a small fraction of her money in retirement.
These are not gullible people. The policyholders who got caught up in the Equitable Life disaster were hard-working taxpayers who played by the rules, worked hard and prudently and responsibly saved for their retirement. The lady I just mentioned had worked for a company that had to comply with financial services legislation, which only serves to fuel her incredulity at what has been allowed to happen. She retired 20 years ago, hoping that the policy she had taken out would fulfil its promise, but she was misled and mis-sold a policy that she had received with good industry-approved advice. She believed that she held a legitimate and lucrative policy. She, and many others like her, put their faith in the pensions system and planned for their retirement sensibly, only to find that the rug had been pulled from beneath their feet when they retired. These are not wealthy people; they are people who are being hit by the cost of living crisis that my other constituents are facing. They have lost life-changing sums of money and their standard of living has been devastated in many cases. Their own personal long-term economic plans have been shredded, through absolutely no fault of their own.
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Some hon. Members have referred to the fact that locating the people who are eligible for compensation has been slow and inadequate. I believe that about 151,000 people still need to be found by the Government. What does the Minister plan to do to widen public knowledge of this issue in the near future? What publicity campaigns are planned to reach the most unreachable people, many of whom are pensioners without internet access? They would probably use the more traditional forms of media used for publicity campaigns. Also, I found it difficult when preparing for this debate to get figures telling me how many of my constituents might be affected. Will the Minister explain to the House why no figures are obtainable showing the regional breakdown of those affected by the collapse of Equitable Life’s payment scheme?
Time is against many of the policyholders. We have heard that many have sadly died. The Lib Dem manifesto promised to set up a
“transparent and fair payment scheme”
and the Conservative manifesto had a similar promise, but many policyholders feel that the current scheme does not fulfil those promises. Those affected by the maladministration of Equitable Life have been left in great financial difficulty despite planning and saving carefully for their retirement. This has had a serious impact on their quality of life. In my experience, those affected are just as angry with the Government as with Equitable Life. They are angry with successive Governments for not taking full responsibility for the failures identified at the time and for not adequately compensating those affected. One elderly constituent said to me, “They are waiting for us to die.” That is the appalling impression that that lady has been given, and I am sure that she is not alone.
I acknowledge that the present Government have made considerable progress towards compensating those who have suffered losses, but that comes nowhere near to fulfilling the promises of a fair payment scheme that appeared in the Conservative and Liberal Democrat manifestos. That is not just my view; I suspect that it is the view of the vast majority of the 1 million people who have been affected. I ask the Government not to leave this matter any longer and to address it in the upcoming Budget. I ask them to ensure that people are compensated so that they no longer feel that the Government are letting them down.
2.36 pm
Greg Mulholland (Leeds North West) (LD): It is a pleasure to speak in the debate. I congratulate my hon. Friend the Member for Harrow East (Bob Blackman), my neighbour the hon. Member for Leeds North East (Fabian Hamilton) and my hon. Friend and colleague the Member for Eastbourne (Stephen Lloyd). I am proud to be a member of the all-party parliamentary group for justice for Equitable Life policyholders, which has shown how powerfully we can campaign when we do so collectively and collaboratively on a cross-party basis. I congratulate the co-chairs and officers for leading us in that endeavour.
I start by welcoming the progress that has been made. I remember the early meetings that took place towards the end of the last Parliament and the frustration that, at that stage, there was no compensation at all. We finally got the announcement of compensation, and
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I welcome the fact that payments surpassing £1 billion have now been made to 896,367 policyholders. That clearly represents great progress, but the clear message from the House today is that it is not enough. This debate itself shows that this is not the end of the matter, however convenient it might be for the Treasury—either side of the election—were that to be the case.
I strongly support the motion today and I shall carry on campaigning on behalf of my constituents as part of the group. About 40 of my constituents have raised this matter with me over the past few years, and many have told me of the hardship that they have experienced. Virtually none of them are wealthy people. They are people whose modest and very well planned retirement incomes have been drastically affected, and that has had a huge impact on their quality of life at a time when they should not have to face that and can do nothing about it. I pay tribute to all of them, and to the way in which they have campaigned as members of the Equitable Members Action Group. They include Ray and Marjorie Dunn, who have worked closely with me and played an important role in bringing people together. It has been a pleasure to work with them and all my constituents.
Stephen Lloyd: Would my hon. Friend also acknowledge the outstanding work that the members of the Equitable Members Action Group have done for us in Parliament? They have kept us informed and provided a secretary, and they have ensured that we pulled together on their behalf.
Greg Mulholland: My hon. Friend makes an important point. EMAG has done a wonderful job. Working together, inside and outside the House, has been an exemplary way of getting positive change.
One thing has not been raised in this debate so far and I am pleased to raise it strongly, as a member of the Public Administration Committee in this Parliament. One contributor today said it was disgraceful that neither the previous Government nor this Government had fully abided by the clear view or the will of the ombudsman, because they thought, “What’s the point?” I urge right hon. and hon. Members to look at the Public Administration Committee’s reports in this Parliament, because we are calling for a radical overhaul, part of which should be that Governments are bound by such decisions so we would never have this nonsense.
We have an absurd situation, because we are talking about the Parliamentary and Health Service Ombudsman, with the responsibility to Parliament. The Public Administration Committee has a view, as the Select Committee that oversees the ombudsman, and it wants a radical overhaul, The ombudsman’s office wants a radical overhaul, as does the ombudsman herself and the public, but we cannot have one because Parliament cannot reform its own ombudsman—only the Government can do so because it requires primary legislation. That is absurd and we need to find a way to enable Parliament to introduce legislation for matters that are parliamentary and not to do with the Government. I urge the Government in the Parliament—whoever is in government—to listen finally to that, to let go and allow Parliament to reform its own ombudsman in a way that is so clearly needed.
I am glad that this Government have come up with more than Sir John Chadwick proposed, which we all strongly said was not enough. I am also pleased with
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the campaign launched in October 2013 to find the 400,000 lost victims of the Equitable Life scandal. There are now approximately 142,000 policyholders who are due a payment but the scheme has not yet been able to trace or validate their address, so I hope that work will continue. This is taking too long, given that these people are in their retirement, need this money now and simply cannot wait. Tragically, some of them have died, and some will die without having had the chance to get that money they are clearly owed as a result of the maladministration and lack of regulation.
What is particularly galling is that there has been a double failure of regulation: the failure to regulate the banks properly led to the catastrophic collapse in the banking sector, which then led to vast amounts of money going to bail out those banks, and that is one reason there is not the money in the pot to compensate these people. That is a bitter pill to swallow, which is why there is no justification for not backing today’s motion and not coming forward, finally, after all these years, with the solution that is clearly the right and moral one.
Let me give an example to illustrate that point. After the giving of £620 million to 37,000 annuitants, 945,000 Equitable Life policyholders have shared the remaining £775 million, which of course is the 22% of their losses. Yet when we look at how much money has gone into the banking sector—we still have publicly owned banks—we see that there is a discrepancy that simply does not sit right and must be addressed.
We must finally draw this matter to a close. We must finally see a fair and final resolution. I share the passion of right hon. and hon. Members in not wanting to have to debate that; we must not be debating this issue at the end of the next Parliament. I hope we shall see some progress in the Budget. It is realistic to say that it will be some and not all—the latter would not be realistic—but it absolutely must be in the next Parliament. Let us now have a cross-party convention, let us take this out of the electioneering and have a genuine, firm policy commitment that the next Government will honour this pledge, as should have been done. It is an obligation on the British state, an obligation on this House and an obligation on this Government and the next one. It is an obligation that must finally be honoured.
2.44 pm
Stephen Timms (East Ham) (Lab): I wish to acknowledge, again, as has been done throughout this good debate, the extent of the hardship and anxiety that all too many people have endured as a result of the failure of Equitable Life. I, too, pay tribute to the hon. Members for Harrow East (Bob Blackman) and for Eastbourne (Stephen Lloyd) and my hon. Friend the Member for Leeds North East (Fabian Hamilton) who have led the all-party group, spoken in the debate and championed the cause of the victims of the Equitable Life collapse over the years, and to others like them. Like the hon. Member for Leeds North West (Greg Mulholland), I also want to pay tribute to EMAG for its tireless campaigning on behalf of so many people who have lost so much. Its campaign has won real sympathy and support in Parliament and among the wider public.
My hon. Friend the Member for Coventry North West (Mr Robinson) rightly pointed out that the hon. Member for Bromley and Chislehurst (Robert Neill)
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seemed to be a little unsure of the history of this case. The problems at Equitable Life occurred between 1990 and 2001, so almost all occurred under the regulatory arrangements in place before the creation of the Financial Services Authority. The previous Government, of whom I was a member, issued an apology in January 2009 to policyholders, on behalf of the public bodies and the successive Governments responsible for the regulation of Equitable Life between 1990 and 2001 and for the maladministration that took place.
The consistent argument of EMAG has always been that the losses incurred by Equitable Life members are due to maladministration, as opposed to the bad investments and rash actions undertaken by Equitable Life. As we have heard in the debate, EMAG felt vindicated by the ombudsman’s reports. The previous Government did not agree with that view—with the view of the ombudsman. Members of the current Government stated clearly during the election campaign —we have heard about the pledges that were widely signed by Government Members—that they did agree. In government, however, they have not delivered.
The previous Government recognised that many policy- holders were disproportionately affected by the events at Equitable Life, and on that basis announced a commitment to a payments scheme to help. The ombudsman proposed a scheme entailing a case-by-case review, looking at 30 million investment decisions by 1.5 million people over 20 years. The ombudsman thought that would take two and a half years, but others thought it would be more. The previous Government asked Sir John Chadwick to advise on a simpler scheme. His report in July 2010, after the general election, referred to
“the obvious impracticability—if not impossibility—of determining these questions on an individual basis”.
The new Government, elected in 2010, explicitly accepted the ombudsman’s recommendation. Indeed, today’s motion, which I shall address in a moment, congratulates the Government on accepting the ombudsman’s recommendation in full. However, that announcement having been made by the new Government, the ombudsman then wrote to every Member of the House in July 2010, saying:
“In the light of the new Government’s commitment to implement”
“recommendation in full, the approach embodied in the Chadwick report has thus been overtaken by events and cannot provide a basis for the implementation of the recommendation.”
She said that her proposal and Chadwick were irreconcilable, but Chadwick, as we have heard in this debate—the hon. Member for Leeds North West mentioned this—was in fact what was done. During the election campaign in 2010, the then Opposition spokesman went around the country promising that, if elected, the Conservatives would deliver on the ombudsman’s recommendation. During the campaign, EMAG asked candidates to sign a pledge. The hon. Member for Harrow East was telling us that Conservative candidates were encouraged to sign this pledge. It said:
“I pledge to the voters of this constituency that if I am elected to Parliament at the next general election, I will support and vote for proper compensation for victims of the Equitable Life scandal and I will support and vote to set up a swift, simple, transparent and fair payment scheme—independent of government—as recommended by the Parliamentary Ombudsman.”
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More than 90% of Conservative Members signed that pledge: the Prime Minister did, the Chancellor of the Exchequer did. Every Liberal Democrat MP signed it, including the Deputy Prime Minister, and Equitable Life members and EMAG expected that once the coalition took office it would be delivered, but it was not. Not surprisingly, EMAG felt and still feels utterly let down by so many who signed that pledge in 2010 and did not deliver.
My hon. Friend the Member for Leeds North East referred to his amendment in the House in November 2010. I was just looking through the list of the 76 Members who voted for it, which includes the hon. Members for Harrow East and for Eastbourne, and of course my hon. Friend the Member for Leeds North East, but it was mostly Labour Members who voted for it. Hardly any of the 287 Conservative Members who signed that pledge voted for my hon. Friend’s amendment.
The Government formally accepted the ombudsman’s recommendation, but described Sir John Chadwick’s recommendation as one of the building blocks for a solution. That infuriated the ombudsman who argued that as the Government had accepted her recommendation, Sir John’s report was no longer relevant. It is worth looking again at what the ombudsman recommended. She wrote:
“My second—and central—recommendation is that the Government should establish and fund a compensation scheme, with a view to assessing the individual cases of those who have been affected by the events covered in this report and providing appropriate compensation. The aim of such a scheme should be to put those people who have suffered a relative loss back into the position that they would have been in had maladministration not occurred.”
No one would claim to the House that that is what has been done. The hon. Member for Southend West (Sir David Amess) made the point—the ombudsman’s recommendation has not been delivered—so I am a little puzzled, if I can cavil, as to why the motion invites us to welcome the Government’s acceptance of the ombudsman’s findings in full, given that they certainly have not been implemented.
Legislation was enacted in 2011 for a scheme. It is not an easy thing to fashion a scheme that is both fair to members and protects the public purse. The Government came up with a scheme that was reasonable, although it fell far short of what was hoped for. I am sure that other Members who have spoken have seen the film on the EMAG website, “Time for the Treasury to Settle its Debts”, which features quotes from both the Conservative and Liberal Democrat manifestos—commitments referred to by my hon. Friend the Member for Airdrie and Shotts (Pamela Nash) and by the right hon. Member for Arundel and South Downs (Nick Herbert) earlier in the debate. The Government therefore formally accepted the ombudsman’s recommendations, but instead implemented Sir John Chadwick’s recommendation.
We all hoped that the new scheme would administer payments effectively and efficiently. The Public Accounts Committee has been critical of the administration of the scheme, referring to a series of administrative failures, including delays in making payments to policy holders and poor customer service. Then in the March 2013 Budget the Chancellor announced some welcome limited compensation for those who bought their with-profits annuity before 1992.
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Many people have suffered, in some cases a great deal, as a result of the failure of Equitable Life. The hardship suffered is not in doubt. We support the steps that Ministers have taken to provide some compensation, but it falls very far short of what Equitable Life members thought they were being promised by Conservative and Liberal Democrat Members during the election campaign.
The Minister who will reply to the debate today signed that pledge. She made a commitment to her constituents to support and vote for the full compensation that the ombudsman called for. It is for her to explain to the House and to all those who have lost so much why that pledge has not been delivered.
2.54 pm
The Economic Secretary to the Treasury (Andrea Leadsom): I add my congratulations to my hon. Friend the Member for Harrow East (Bob Blackman) and the hon. Members for Leeds North East (Fabian Hamilton) and for Eastbourne (Stephen Lloyd) on securing the debate. Their tireless work on this important issue is greatly appreciated by our constituents. Prior to my ministerial appointment, I was a member of the all-party group on Equitable Life policyholders and a number of my constituents have been badly affected, so I am deeply sympathetic to policyholders’ losses in this sorry tale. I shall explain what the Government have done to resolve the long-standing issue of Equitable Life and set the record straight on some of the history.
This situation has been a key priority for the Government. While Equitable remained solvent and continued to pay premiums to its members, its problems caused a great many of its policyholders to suffer significant emotional and financial distress. When we came to office, we made a commitment to implement the ombudsman’s recommendation that the Government should make fair and swift payments to Equitable Life policyholders in recognition of the part that the Government played in Equitable’s problems. Those payments were swift, in that within six months of taking office, we introduced the Bill that became the Equitable Life (Payments) Act 2010, and payments started to be made to policyholders in June 2011, which was within six months of Royal Assent. They were also fair because the scheme’s rules are based on the Government’s full acceptance of the parliamentary ombudsman’s findings of maladministration and, importantly, on the assumption that all policyholders would have decided to invest elsewhere had the maladministration regarding regulatory returns not occurred. Of course, that is a conservative assumption.
The ombudsman did not quantify the relative loss, which is the difference between the amount received by Equitable Life policyholders and what they would have received if they had invested in the same way in a similar company, but this Government assessed the total as £4.1 billion. That was significantly more than the final figure of £340 million that was arrived at under Sir John Chadwick’s methodology, which was based on the previous Government’s limited acceptance of the ombudsman’s findings. In the 2010 spending review, after taking account of the need to be fair to all taxpayers, we announced that up to £1.5 billion would be made available for payment to eligible policyholders.
Mr Christopher Chope (Christchurch) (Con):
Is my hon. Friend going to address the part of the motion that calls on the Government to pay full compensation
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in the next Parliament? The right hon. Member for East Ham (Stephen Timms) did not deal with that point, but our constituents want it to be addressed.
In line with representations received, out of that £1.5 billion, we covered the relative losses of the with-profits or trapped annuitants in full. Those annuitants were unable to move their funds elsewhere or to mitigate the impact of their losses by seeking employment. They were also generally the oldest policyholders. The remaining available funding, on the advice of the independent commission, was distributed pro rata to other policyholders, representing 22.4% of their relative loss. I know that that was deeply disappointing to many. These difficult decisions were taken in the light of the position of the public finances and in the interests of overall fairness to all taxpayers.
“the Parliamentary Ombudsman recommended that policyholders should be put back in the position they would have been in had maladministration not occurred”.
However, the ombudsman went on to say that the impact on the public purse should also be taken into account when considering payment. She also stated that she was acutely conscious of the potential scale of what was recommended. She has subsequently written to the all-party group to say that the Government’s decisions on affordability and eligibility cannot be said to be incompatible with her report.
I congratulate all Members who contributed to the debate. It is clear that they have been assiduous in representing their constituents and have done an excellent job. My hon. Friend the Member for Southend West (Sir David Amess) talked about Ernst and Young as the auditors of Equitable, so he might be interested to note that in 2010, for its part in Equitable Life, it was fined £500,000, plus costs of £2.4 million, and received a reprimand by the accountants’ joint disciplinary scheme.
The hon. Member for Airdrie and Shotts (Pamela Nash) asked for a regional breakdown of amounts paid. No breakdown by region has yet been compiled, although we could produce a basic one if that would be particularly helpful. However, I assure her that regionality does not influence the scheme’s operation in any way.
My hon. Friend the Member for Harrow East, as well as the hon. Member for Coventry North West (Mr Robinson) and my hon. Friend the Member for Southend West, talked about the situation for the pre-1992 annuitants and the fact that they are elderly and financially vulnerable. The first regulatory return from Equitable Life that would have been different had there been no maladministration was that of 1991. This was available on request from Equitable Life from mid-1992 and could not, therefore, have been expected to influence investor decisions before late 1992. Therefore no relative loss was suffered by this group. However, as hon. Members have recognised, the Government agreed that this group of pre-1992 annuitants, although they are not affected by maladministration, have suffered significantly from a loss of income that they would have expected. For this reason the Government made an exceptional ex gratia payment of £5,000 to this group, with a further £5,000 to those on pension credit, in December 2013.
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The hon. Member for Leeds North East and the right hon. Member for Knowsley (Mr Howarth) raised the question of compensation for the Icelandic bank savers in Icesave and why Equitable Life savers are being treated differently. The ex gratia payments to UK depositors in Icelandic banks were made as a result of a decision by the previous Government to guarantee all qualifying retail deposits specifically to protect the financial stability of the UK. The financial compensation scheme was simply the agent for these payments and we expect to recover all those sums from the Icelandic banks and are continuing to do so.
Specifically in the case of failed banks and why they receive compensation, the Financial Services Compensation Scheme is funded by a levy on financial services firms, so again those compensations do not come from the public purse.
In answer to the hon. Members for Moray (Angus Robertson) and for Airdrie and Shotts who asked when the scheme stops tracing people, all policyholders are either written to at their last known address or put through electronic tracing methods, such as looking them up against the electoral roll. Attempts are made through the Department for Work and Pensions to trace those owed more than £250. I should tell hon. Members that about 50% of the remaining policyholders are due less than £100.
My hon. Friend the Member for Poole (Mr Syms) asked whether we could re-allocate the remaining £500 million. That remaining £500 million is to make ongoing payments to annuitants for the duration of their annuity. Finally, the hon. Member for Stretford and Urmston (Kate Green) and my hon. Friends the Members for Bromley and Chislehurst (Robert Neill) and for Southend West asked what we had done to ensure that people were not put off the idea of saving for their retirement. As hon. Members know, the Government have undertaken a fundamental reform of the regulatory system, and put in place the Financial Services Act 2012 to establish a new system of specialised and focused financial services regulators. They abolished the FSA and set up new regulators within the Bank of England and the independent conduct of business regulator, the Financial Conduct Authority. These reforms are designed to ensure that the conduct of firms, and with it the interests of consumers and participants in our financial markets, are at the heart of the regulatory system and are given the priority that they deserve.
The recent news on the improvements that this economy has made since 2010 is to be welcomed and shows that this Government’s long-term economic plan is working, but we have a long way to go to restore the public finances, and the public purse remains very constrained. It is right that we have taken action on the Equitable issue, but we must balance this with the need to continue to address the difficult position of the public finances and the impact on fairness to all taxpayers. That is why
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this Government have no plans to change the funding available to the payment scheme. Our focus is rather to complete the small number of remaining payments. We have continued to make excellent progress with the scheme itself. Only this week I was pleased to report that over £1 billion has been paid to nearly 900,000 eligible policyholders.
In conclusion, I genuinely have deep sympathy with those who carefully saved for retirement and are not receiving the income they expected. Resolving the Equitable Life issue, and doing so swiftly and in a way that was fair to all taxpayers, has been a priority for the Government.
3.4 pm
Bob Blackman: I congratulate the 12 Back-Bench Members from across the House who made speeches in the debate and the huge number who intervened. The will of the House is quite clear: this is a debt of honour, and it is no fault of the individual savers whose life savings have been either lost or severely depleted. We have heard many examples from Members. I could produce a mailbag full of examples of individuals from across the country who invested for their retirement but are now unable to supplement their income, through no fault of their own. They did the right thing by saving for their retirement, but through regulatory failure, a failure by Equitable Life and a conspiracy with the then Government, their savings were taken away from them.
This is a debt of honour, so I must stress the point that we should honour it over the course of the next Parliament. I completely accept my hon. Friend the Minister’s point that the economy was in tatters in 2010 and that a series of difficult decisions had to be made. I congratulate the Government on coming forward with a large sum of public money to compensate those individuals who are due. However, a debt of £2.8 billion is still owed to those people who saved for their retirement. That should be funded over the course of the next Parliament.
However, given the remarks from the Minister and the shadow Minister, I fear that there are currently no plans to provide that compensation. That means the battle will go on. The fight will continue until such time as the Equitable Life policyholders receive the compensation they are due. Therefore, if it comes to it, we will press the motion to a vote.
That this House congratulates the Government on providing a scheme to compensate victims of the Equitable Life scandal; welcomes the Government’s acceptance of the Parliamentary Ombudsman’s findings in full; notes that the Parliamentary Ombudsman recommended that policyholders should be put back in the position they would have been in had maladministration not occurred; further notes that most victims have only received partial compensation compared to the confirmed losses; and calls on the Government to make a commitment to provide full compensation during the lifetime of the next Parliament as the economy and public finances continue to recover.
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Epilepsy
3.6 pm
Laura Sandys (South Thanet) (Con): I beg to move,
That this House has considered epilepsy.
I would like to start by thanking the Backbench Business Committee for allowing my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), who has done so much to support and advocate on behalf of people with epilepsy, and me the opportunity to have this debate. It is a great honour to be able to open this debate in the presence of so many fellow members of the all-party group on epilepsy, who over the past five years have worked together to ensure that we raise epilepsy issues with all the relevant Departments. However, I personally feel that I might not have done enough. There is still so much more to do to ensure that epilepsy has its rightful place in health and social care and that it is seen as a chronic condition that needs greater attention, greater support and—this is very close to my heart—much less stigmatisation.
Mr Mark Prisk (Hertford and Stortford) (Con): I am grateful to my hon. Friend for giving way and sorry to interrupt quite so early in her speech. I strongly support her and my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) in securing this debate. Like my right hon. Friend, I am blessed by having a national epilepsy centre in my constituency, but I still have constituents who worry about stigma. In particular, Rachel Dawes and Susan Gayler feel that even now, despite having a national centre of excellence locally, the issue of stigma is important? Does my hon. Friend agree?
Laura Sandys: I most certainly do. Addressing stigma is at the heart of the treatment, care and, frankly, funding for epilepsy. Too often it is swept under the carpet. For example, statistically there should be many more Members of Parliament who have declared themselves as having epilepsy. That is because of the stigma and the overall environment for people like me—I am a sufferer, as is my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard)—so no doubt there are more Members of Parliament who have epilepsy.
Sir Bob Russell (Colchester) (LD): Part of the training for first-aiders is how to deal with epilepsy. Does my hon. Friend agree that if first aid were part of the school curriculum, more people would be able to deal with such situations?
Laura Sandys: I know that first aid in schools is an issue that the hon. Gentleman is very passionate about. I absolutely do agree. This condition impacts one in every 100 people; it is a very large-scale chronic condition. When a child falls to the floor in school, they need people who are confident to deal with them—who know what the issues are, can calm the rest of the classroom, and understand that this can be managed and supported. If people in authority do not know how to respond—we have examples among the police, those in schools, and even nurses—they feed the stigma, feed the problem, and feed the anxiety around people with this condition.
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I feel that we have not done enough to push for greater change and greater focus, and to ensure that Government and the charities have greater ambition for people with epilepsy. However, I think we have done a reasonable amount, and I hope that over time we will do much more in this place and outside.
Stigma is one of the problems. Epilepsy is not trendy; it is not a fashionable condition. It is not information that people volunteer when they make a job application. I can assure Members that one does not talk about it as a set-piece at social events when describing an illness during the week. People with epilepsy frequently try to disguise it; we can see it in their eyes. I have always been very clear about it, because I believe that we should take away the stigma. We cannot normalise it, because it is not a normal condition, but we can make it something that needs to be addressed in equality with other chronic conditions.
Kate Hoey (Vauxhall) (Lab): Does the hon. Lady think it shocking that in this day and age a very large public body like Transport for London—London Underground —could sack a young woman for the fact that she has epilepsy? Does she agree that we cannot allow this to happen?
Laura Sandys: I very much welcome that intervention. I was going to mention that case, which is extraordinary for two reasons. First, why would the young woman lose her job? She already had the job and was succeeding in it, so why was the sudden revelation of her epilepsy a reason for losing it? Secondly, her manager said that it had absolutely no impact on her ability to perform her role.
This is, in many ways, a 19th-century attitude. It is the expectation that when one tells somebody that one is epileptic, they expect one to be dropping to the floor foaming at the mouth. Many in this Chamber may not know that until the 1970s I, as an epileptic, would not have been allowed to marry—although I am sure that many did because they did not declare that they had epilepsy. That is the sort of stigma that we were dealing with not so long ago. It is a Dickensian, 19th-century perspective. I believe, fundamentally, that that lies a little at the heart of why, for a chronic condition that impacts one in 100 people—more than many other conditions—epilepsy does not get the right level of attention. This is an important task for us here in the Chamber and for the all-party group on epilepsy, and for me to continue outside this place. Many other conditions have overcome embarrassment and stigmatisation. It is absolutely crucial that we start to address this through our public services, our schools and education system, and our hospitals and GPs.
It is important that those of us with epilepsy are much more vocal. I hope that the Serjeant at Arms will not come and arrest me, but my hon. Friend the Member for Blackpool North and Cleveleys and I have actually broken the rules of the House. We did not exactly sneak up Big Ben, but we broke the very clear rules saying that anyone with epilepsy is not allowed to go and look at it. We thought, “You try and catch us!” We broke the rules of the House, and went up to the top. We have used that as a platform for saying that we should both contest it when epilepsy is not supported effectively enough, and challenge people who do not understand epilepsy enough
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and are fearful of those who have it. We think it took 150 years for somebody with epilepsy to go up Big Ben, and we are trying to identify other rules that we can break, so if hon. Members hear that my hon. Friend and I have got into trouble, they will know what it is all about.
Epilepsy has a very wide range of symptoms. I am very lucky to have very mild epilepsy. It is controlled and I am on medication, so there is no issue and I am very unlikely to have a seizure. However, it is incumbent on people such as me to be a voice for people who are suffering, and who may have a seizure every 10 to 15 minutes. I know that my right hon. Friend the Member for Chesham and Amersham, like Young Epilepsy and Epilepsy Research, very much focuses on people with chronic epilepsy. Such people do not necessarily have a voice, and it is for us to make their voice heard.
The issue that has arisen in relation to the lady from London Underground is not the only example. Several people have e-mailed their Member of Parliament and asked me to raise their concerns. A young woman with a masters degree cannot find a job because employers say that she has declared she has epilepsy and they are concerned that she may become a problem for the company. That has now happened 12 times, but it must not continue. We must ensure that employers, the police and hospitals—even in a hospital, someone having a seizure has been accused of being drunk and disorderly—understand people with epilepsy and recognise their condition for what it is.
Mrs Cheryl Gillan (Chesham and Amersham) (Con): May I congratulate my hon. Friend on leading the charge in getting this debate? She will be very sadly missed in this place, where she has made a tremendous contribution. Does she agree that it is very important to understand more about the condition of epilepsy? Another area in which I take a great interest is autism, and it is estimated that 46% of children with autism also have seizures. Does she agree that we do not yet know enough about the relationship between epilepsy and other conditions, such as autism, to enable us to succeed on behalf of such people?
Laura Sandys: Absolutely. I totally agree. In many instances, people with epilepsy also have other chronic conditions, which are no doubt contributory factors. The level of support for research on epilepsy is significantly lower than for other conditions. Again, it is seen as a secondary or tertiary priority when it comes to research funds. It is absolutely crucial to understand the interrelationship between epilepsy and autism, as well as between epilepsy and school achievement and all sorts of not only chronic conditions but life-restricting—as well as life-enhancing—problems. I believe that we need a lot more research, but this comes down to people being clear that epilepsy matters.
Steve Rotheram (Liverpool, Walton) (Lab):
On that point, I have had correspondence with a hospital in my constituency called the Walton neuro centre. It says that neuropsychological care is very important, especially for younger people who, if they have access early enough, have the propensity to go on and achieve their full potential. Does the hon. Lady agree that Ministers
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should consider what more they can do on access to such neuropsychological assessment and care, and in supporting the work of the Walton neuro centre?
Laura Sandys: Absolutely. There are some wonderful, excellent centres in constituencies around the country, including in the hon. Gentleman’s constituency, but there are too few of them and there is not enough immediate referral to tertiary care once a GP identifies that epilepsy might be at the heart of a problem. We need to ensure that there is a greater understanding at the core of our health sector so that there is more referral. To be frank, we need more specialists. There is a major problem in the referral process. Epilepsy Action says that 138,000 people have been misdiagnosed. Some people are diagnosed with epilepsy who do not have it and others do not have the right medication. It is crucial to address the huge problem with referrals to tertiary care.
Following diagnosis, the cost-effective and life-enhancing pathway is to ensure that the ongoing care fits the bill. There are straightforward National Institute for Health and Care Excellence guidelines that lay out a clear pathway. There must be access to an epilepsy nurse. It would be fantastic if more GPs had epilepsy as a specialism. There must be a wrap-around package that allows people to live their lives and take control of their chronic condition. We must ensure that we have the right level of support at every single level. I am talking about people who are still potentially going to work and living their life.
We have a serious problem with SUDEP, or sudden unexpected death in epilepsy. That is an outrage. About 1,000 people every year die in their sleep. Many of them are younger people who are just moving from youth to adult services and there is not the wrap-around care that is needed. We all know from our casework that in every instance and with any condition, moving from youth services to adult care is a problem. We are seeing serious problems with those who have night-time seizures. To be frank, although people say that that is a problem, there are examples of countries in Europe that are doing better. It is crucial that we meet those targets and ensure that we do not fall behind the standards of other European countries.
I see that Mr Deputy Speaker is looking for me to wrap up. I would like to commend three sets of people, but also to challenge them. People with epilepsy live with a difficult and unpredictable condition. I take my hat off to them and to the people who care for them. However, I want them to come out and talk about epilepsy. I ask them to please ensure that their voice is heard, because if it is not, we will not get the care that we need. The charities are important, but they need to work together more. Their voices must be unified to ensure that they are heard. I call on the Government to address the Cinderella status of epilepsy. We should be doing so much better. We have criteria and there are examples, globally, of countries that are doing better. We must give people with epilepsy a lifeline to ensure that they can live a full life, and we must put the right level of investment into research to address chronic epilepsy in the long term.
Mr Deputy Speaker (Mr Lindsay Hoyle): Order. I am bringing in an eight-minute limit. I call Kate Hoey.
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3.24 pm
Kate Hoey (Vauxhall) (Lab): Thank you, Mr Deputy Speaker. I will certainly keep to that time limit.
I welcome the debate and congratulate the hon. Member for South Thanet (Laura Sandys) and the right hon. Member for Chesham and Amersham (Mrs Gillan) on making it happen. As Members will know, I had an Adjournment debate on the subject on 29 January 2013, just after the report “A Critical Time for Epilepsy in England” had come out.
The hon. Member for South Thanet covered a wide range of points, all of which I agree with her about, particularly the stigma of epilepsy. That is a crucial point, but I will not go over all of what she said. I want to use this opportunity to ask the Minister various questions. He kindly responded in detail to the Adjournment debate, when we had slightly longer than half an hour, and I thought it would be helpful to follow up on a number of the issues that were covered.
I want to ask the Minister about the progress that has been made on urgent referrals, about which I and a number of other Members have been concerned. As I understand it, referrals are in theory currently meant to take two weeks, but I have had constituents who have had to wait well over two months. I want to check what the Minister is doing to urge commissioning groups and others to speed that up, because it really makes a difference if someone is seen as quickly as possible.
Part of the problem in looking at epilepsy is the lack of understanding throughout the country. Many people do not say that they have epilepsy of one form or another, but it is amazing how many times, when it comes up in a conversation, people say, “Oh yes, my cousin”—or uncle or whoever—“has epilepsy”. There is always somebody, because the numbers are very large. Will the Minister say something about that?
As I mentioned in the previous debate, a significant number of people with epilepsy have avoidable seizures. If the correct treatment is given at an early stage, that consequence can be avoided, which prevents benefit dependency, the loss of employment or people having to give up education due to a lack of support.
Will the Minister confirm what progress his Department has made on some of the other issues that were raised in my Adjournment debate and previous debates, and by my hon. Friend the Member for Walsall South (Valerie Vaz) when introducing her ten-minute rule Bill, which I am sure she will want to mention? There is a stigma to epilepsy, but we have to promote the positive fact that so many people with epilepsy live perfectly normal lives which we would all be proud of and happy with. Will the Minister make a commitment that the disabled freedom pass and disabled railcard will continue to be available to those with epilepsy? Will he reassure anyone who is watching that that important support will definitely be kept?
Epilepsy constitutes a disability under the Equality Act 2010, and as such, employers are required to make reasonable adjustments so that employees suffering from epilepsy can stay in work. Epileptic episodes are often triggered by work, particularly when an individual is working long hours or is otherwise under stress. However, people suffering from epilepsy are perfectly able to function at the highest levels, and in many cases can successfully medicate to reduce or entirely eliminate the
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occurrence of attacks. Almost three quarters of people suffering from epilepsy can be free of seizures once they find the most appropriate medication. Women of child-bearing age are restricted in the drugs that they can take, and people who first suffer from epilepsy in early adulthood often take a long time to adjust to the condition and make changes to their lifestyle.
I want to draw the Minister’s attention to the case of London Underground worker Karen Guyott, which was mentioned earlier. She is 29 years old, and she was diagnosed with epilepsy about five years ago. She has now been dismissed due to her epilepsy. Karen was one of a number of London transport staff suffering with epilepsy—I think that 16 are London Underground operational staff, and there are a further 11 working for Transport for London.
London Underground’s original response to Karen’s diagnosis was to attempt to dismiss her right away using its capability procedure. The National Union of Rail, Maritime and Transport Workers successfully fended off that attempt, and instead got London Underground to make reasonable adjustments. Now, as I said, she has been dismissed, and I think the Minister should look into that and review it.
Karen’s attendance record was exemplary, and in January this year during an episode, one of her colleagues moved her from a place of safety and left her outside a locked station supervisor’s office that was close to an escalator. Karen became disorientated and wandered towards the escalator, but her colleague realised the danger and moved her into the office. As a result of that incident, instead of providing training for Karen’s colleagues, London Underground argues that Karen’s condition is too risky for it to manage, and it is clear that it is no longer willing to accommodate her. Karen is a prominent trade union activist, but if London Underground is using epilepsy as an excuse because she is a trade union activist and it does not like her or some of the things she says, that is even more shocking.
London Underground agreed to undertake a further risk assessment that amounts to an additional requirement on Karen to which other employees without epilepsy are not subject. Since then Karen has been dismissed, but London Underground insisted that she could not work at any station that had a public highway attached to it or any escalators or stairs. Everything she did required a “zero-risk” policy—the risk had to be eliminated —and such an approach is out of step with London Underground’s usual policy.
London Underground’s equality and inclusion procedure states that employees who develop conditions during their working life must be transferred to a suitable position. As a huge public sector employer that has signed up to all legislation on equality and equal rights, London Underground should have made more effort to keep Karen employed, because with a modest amount of training that support can be provided. Given the risks that London Underground deals with regularly, a member of staff temporarily struggling to manage a relatively newly diagnosed but easily treatable condition would seem to be at the lower end of those risks.
A recent employment appeal tribunal, Dyer v. London Ambulance NHS Trust, stated that the duty to make reasonable adjustments must always be carefully considered, and that only in the rarest of cases could no reasonable adjustments be made. That affirms that even when it
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comes to epilepsy, the duty to make reasonable adjustments could extend to redeployment with the additional support of the Access to Work programme. A lot more must be done and London Underground must be put on report.
3.32 pm
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
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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
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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.
3.41 pm
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.
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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.
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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.
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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?
3.51 pm
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
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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
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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.
3.59 pm
Valerie Vaz (Walsall South) (Lab): It is a pleasure to follow the hon. Member for Wycombe (Steve Baker). I am sure I speak on behalf of all hon. Members in asking him to pass on the sympathy of the House to his constituents, whose case he has so ably put forward.
I start by paying tribute to the hon. Member for South Thanet (Laura Sandys) for her work as chair of the all-party parliamentary group on epilepsy, and for fulfilling her final task of securing this debate before leaving the House. She will be sadly missed; we shall
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also miss her enthusiasm and her commitment to epilepsy and to her constituents, for whom she has been an assiduous MP.
Laura Sandys: I am absolutely thrilled that the all-party group’s chairmanship has been handed to my hon. Friend the Member for Walsall South (Valerie Vaz), who I know will put a huge amount of passion and energy into continuing the fight and ensuring that the voice of those with epilepsy is very much heard.
Valerie Vaz: I am grateful to the hon. Lady. I hope to be as good as her, but I am not sure that I will be.
This is a timely debate, in that it comes between two important dates. The World Health Organisation adopted a resolution on 2 February this year, and world epilepsy day is on 26 March, when we are all urged to “colour it purple”. It is just an accident that I happen to be wearing purple today. This debate is taking place 12 days after 14 February, and most people probably know that St Valentine is the patron saint of epilepsy. The WHO launched a campaign on 9 February to improve the epilepsy treatment gap and it urged member states to look into the matter. It set out a number of clauses, and I shall mention just a few of them. Member states were urged: to ensure public awareness of and education about epilepsy; to integrate epilepsy management; and to introduce and implement national health care plans of action for epilepsy management. There are many more clauses and I urge hon. Members to look at them. A number of excellent reports have been published recently and I will touch on those in a moment.
I want to deal with three different stages of services: those for young people; the transition from young person to adult; and adult services. Here are some background facts. The brain is the most complex organ in the body with more than 100 billion neurones passing messages around it. The vast majority of the brain’s activities are subconscious. Epilepsy is a life-threatening neurological condition that can affect anybody at any age without warning. There are 40 different types of epilepsy and at least 40 different types of seizure, and 87 people are diagnosed with the condition every day. Epilepsy now accounts for more deaths than cervical cancer and is among the top 10 causes of amenable deaths.
I want to turn first to young people. The report “Improving epilepsy care for children and young people”, published by Young Epilepsy, University college London and Whittington Health highlighted unacceptable levels of misdiagnosis, inadequate communication, a variation in care and a fragmentation of services. There are 112,000 children and young people who have epilepsy, which is one in every 200. The report made seven recommendations. They include creating an individual plan for every child and young person—as one parent has said, a one-size-fits-all approach is wrong; designing a year-of-care tariff for epilepsies; and creating an audit and annual review of relevant outcomes for each child and young person. Dr Amit Bali, who was involved in producing the report, has said that only small steps have been taken in areas that require big leaps forward.
I was at the launch of Epilepsy12 at the Royal College of Paediatrics and Child Health a few years ago. A number of charities were also involved in that, including
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Epilepsy Action and Young Epilepsy. Epilepsy12’s report revealed variations in the level of care and available resources such as the specialist nurses and clinics that are needed to provide care across the United Kingdom. Amazingly, it also found that some services were not even meeting NICE guidelines. In a later report, published in 2014, Epilepsy12 said that some progress had been made, and that two thirds of units had specialised epilepsy nurses and more clinics were being held. However, only two in every three units reported holding a weekly epilepsy clinic just for children and young people.
The way in which young people are treated is important because it affects their education as well as their lifestyle. A three-year population-based study by Children with Epilepsy in Sussex Schools—CHESS—found that 95% of the children affected had difficulty in at least one of the assessed areas and that most of the children had several problems. The CHESS study found that 60% of the children met the diagnostic criteria for at least one behaviour or motor disorder, but only one third had previously been diagnosed. We have heard about the difficulties that children on anti-epileptic drugs have. A study by the Epilepsy Society showed that AED drugs have a detrimental impact on processing speed and memory work.
On the transition period, Epilepsy12 found that there were inadequate services and transition arrangements for young people. So more attention needs to be given to handover clinics, which could comprise both adult and paediatric health professionals. The loss of the continuity of care at transition needs to be addressed to ensure that new relationships with the clinicians are established.
Let me now discuss adults. The report by Epilepsy Action on clinical commissioning groups and commissioning in November 2014 found that only three out of 140 health and wellbeing boards are making plans for people with epilepsy. Some 78% of CCGs have not developed and do not intend to develop a written needs assessment for people with epilepsy—that must change. Evidence also shows that people with epilepsy have poor access to epilepsy specialists and epilepsy specialist nurses, and do not have regular reviews of their epilepsy. My hon. Friend the Member for Vauxhall (Kate Hoey) was kind enough to mention my ten-minute rule Bill, in which I called for direct referrals to a tertiary specialist. That has not been taken up yet, so we need to have referrals from a GP specialist to a tertiary specialist without the need to go through a generalist consultant.
The sudden unexpected death in epilepsy is an important issue, as was highlighted by SUDEP Action. The national sentinel audit of epilepsy deaths in 2002 found that 42% of such deaths were potentially avoidable. Brain surgery is another area where there is a lack of availability, with only 300 operations being carried out on adults each year. It is estimated that approximately 5,000 adults could and should benefit from the only cure there is for their epilepsy. I also wish to add my voice to those of other hon. Members on the outrage at the sacking of the young person at London Underground.
But there is hope for the future. The Epilepsy Society is undertaking active research. Its report highlighted a number of firsts, such as the first brain and tissue bank for epilepsy. It has created the first multilingual digital information resources for epilepsy, and it hopes to unravel the genetic architecture of the epilepsies and bring new hope for people with the condition. We should consider
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ourselves lucky in this country, because not only do we have committed practitioners who are desperate to help their patients, but we have areas where pioneering work is going on, such as that being done by Professor Cross, who has pioneered the ketogenic diet. In the US, until there was “Obamacare” those with epilepsy could not be covered by insurance because they had a pre-existing condition. We take all that for granted, which is why this debate fulfils the important role of highlighting awareness of this condition.
Hon. Members will remember the drama “The Promise”, where the lead character, Erin, not only was a heroine, but had epilepsy, which was incidental to her life: Its writer, Peter Kosminsky, lately the director of “Wolf Hall”, said that he wanted to show someone being brave and getting on with her life without letting her epilepsy circumscribe her actions, in the hope of de-stigmatising the condition. On de-stigmatising, let us also not forget the roll call of creative successful people who have or have had the condition: musicians Neil Young and Prince; and the writers Dostoevsky; Charles Dickens and Lord Byron. I hope we have today brought epilepsy out of the shadows of stigma and discrimination, and into the spotlight of knowledge, awareness and hope for the future.
Madam Deputy Speaker (Dame Dawn Primarolo): Order. We are running out of time for this debate. I want to be fair to all Members, so I am reducing the time limit to seven minutes. If there are not too many interventions, it will not be necessary to reduce it further.
4.9 pm
Greg Mulholland (Leeds North West) (LD): I start by congratulating my hon. Friend the Member for South Thanet (Laura Sandys) and my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing this important debate and giving us all the opportunity to contribute on behalf of our constituents. I particularly thank my hon. Friend for bringing her experience and for what she has done during her time here, and I echo the sentiment that it is a shame she will not be coming back to carry that on. Other people will have to do that, and I am sure right hon. and hon. Members will do that here.
It is important to start by saying that my right hon. Friend the Minister of State, Department of Health has taken a real interest in epilepsy and that he and his colleagues have introduced significant improvements in this Parliament. Equally, the NHS Commissioning Board’s decision to introduce a national clinical director for neurological conditions, Dr David Bateman, has been positive in ensuring that epilepsy is on the agenda at the most senior level in the NHS.
In February 2013 we saw the publication of the NICE new quality standards for children and adults with epilepsy. I also welcome cross-departmental working, and the fact that the Department for Education is looking at better support for pupils in school diagnosed with epilepsy. There is still a lot to do, and still too much of a sense that care is good in some areas and poor in others; that has to be a priority for the next Government.
I am proud that Epilepsy Action, an excellent organisation, is based in Leeds. Its headquarters are in Yeadon, an area that I represent. The office is about
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100 yards over the border in the constituency of my hon. Friend the Member for Pudsey (Stuart Andrew). We share Yeadon, but we are both proud that this wonderful national charity is based in Yeadon in north Leeds. I will not repeat the findings of its powerful survey, except to reiterate one figure. Of the clinical commissioning groups that responded, 70% said that they had not produced and had no plans to develop a written needs assessment of the health and social care needs for epilepsy. That is simply not good enough and it has to change, and quickly. I urge my hon. Friend the Minister in the time that he has remaining to make it clear that that is not acceptable and must change.
Every health and wellbeing board must know how many people in their area have epilepsy and develop an epilepsy section for their joint strategic needs assessment, and that should include information about current local provision and services and future needs. Health and wellbeing boards must also work with their local CCGs to ensure that adults and children in their area experience a joined-up approach to their epilepsy health care needs. Every local authority scrutiny board with responsibility for health must consider whether their JSNA adequately meets the needs of adults and children with epilepsy in their local area.
I am delighted to tell my right hon. Friend the Minister that the Leeds Teaching Hospitals NHS trust—this is not me saying it, but my constituents and practitioners tell me—is one of the best trusts in the country for supporting those who have epilepsy. We are proud of that. The trust has a team providing specialist epilepsy care and advice for people in Leeds and the wider Yorkshire region, and as well as the medical treatment of epilepsy it runs an epilepsy surgery pathway for people with difficult-to-treat epilepsy. It has specialist brain tumour and vagal nerve stimulation clinics. I hope that my right hon. Friend will join me in recognising that Leeds is a centre of excellence for epilepsy. If, in the remaining five weeks while he is definitely in this particular job he has the time to come and visit to meet some of the people involved, I would find time in my diary to join him.
Like many other Members, I have learned from my constituents about epilepsy. My constituent Dominic Ware and his parents Vic and Carol have given me their permission to pass on some of what I have learned from them. My constituent Andy Cavadino also has epilepsy. They have enabled me to see both the good and the issues that need dealing with.
Andy Cavadino’s epilepsy developed over 10 years after a serious head injury. The two main issues affecting him relate to driving and to medication. As a teacher, he finds it frustrating that he is allowed to drive a people carrier but not a minibus. He wants there to be a much more transparent discussion about what vehicles can and should be driven by people with epilepsy. The second issue that he raises has already been covered by other hon. Members. People have an attitude to those with epilepsy; they are often nervous and on edge around people with epilepsy. As Andy told me, people sometimes say, “Take it easy.” We need to raise awareness that people with epilepsy are generally on medication, if they need to be, and that that is helpful. We must do more to fight the sense of concern, paranoia and stigma that is attached to people such as Andy.
Dominic Ware’s epilepsy has been a huge part of his life and that of his parents, Vic and Carol. It is something that they have to cope with. The care that Dominic has
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received in Leeds has saved his life and now enables him to lead a normal life, which is precisely what needs to happen. However, they and especially Vic, who is a passionate campaigner, know that for too many people, that is not the case. During the debate, we have heard of people who, unlike Dominic, have been failed, often with devastating effects, and that is simply not acceptable. Will my right hon. Friend the Minister support Vic’s call that whoever forms the next Government should appoint an epilepsy champion in the Department of Health to bring things together so that there is a single, strong voice in government to push the issue forward?
Madam Deputy Speaker (Dame Dawn Primarolo): Order.
4.15 pm
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.
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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.
4.21 pm
Sir David Amess (Southend West) (Con): The whole House was moved by the speech of my hon. Friend the Member for Wycombe (Steve Baker). The pain of losing a child under such circumstances is unimaginable.
My hon. Friend the Member for South Thanet (Laura Sandys) started her speech by beating herself up because she did not feel that she had done enough to raise the profile of epilepsy. Nothing could be further from the truth. She has done a magnificent job, and she made my day with her invitation to colleagues to come up with ideas about how she should break the law as an epileptic. When she gets back to her room later, she will find that she is inundated with suggestions. I, like others, am very sorry that she has chosen not to stand in the next election. I hope to God that she is replaced by someone with the good common sense and judgment that she has shown throughout her time as a Member.
Epilepsy is a potentially life-threatening neurological condition, as other speakers have said. It affects the lives of nearly 500,000 people in England alone. It can reduce life expectancy by up to 10 years and can leave people unfit to work, as we have heard. Among other consequences, epilepsy affects children’s performance at school owing to seizures. Nearly half of the number of deaths from epilepsy can be avoided. In the constituency that I represent, there are an estimated 865 people suffering from epilepsy. This figure increases to 13,600 for the county of Essex.
What are the local CCGs doing to assist people with epilepsy in the area that I represent? I am afraid to tell the House that the answer is not enough. Clinical commissioning groups have a very important role to play. They have a strategic influence and make commissioning decisions that impact on the lives of an
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average of 2,370 epilepsy sufferers in each CCG area. I have recently been in contact with Epilepsy Action which—I agree with others—is doing a wonderful job in raising awareness of the problems faced by people with epilepsy. I was shocked to hear that my local Southend CCG has no plans to produce a written needs assessment of the health and social care needs of people with neurological conditions; has no plans to produce a written needs assessment of the health and social care needs of people with epilepsy; has not identified neurology or epilepsy as an improvement and saving opportunity; has not identified neurology as a priority for the local health and wellbeing board; and has not appointed a clinical lead for neurology. That is simply not good enough.
Southend West has a higher than average number of people with epilepsy, because of its high age profile. The correct ratio for specialised epilepsy nurses to patients is 1:300. The specialist nurse at Southend hospital is currently looking after more than 1,000 patients, which is absolutely ridiculous. That has to change. More specialist epilepsy nurse posts must be created before any improvements can be felt by my local residents. I fully accept that it is a country-wide problem, but it is very frustrating that most CCGs do not understand the needs of people with epilepsy.
I am in regular contact with the South East Essex Epilepsy Support Group, which is superbly led by its chairman, Mrs Diane Blake-Lawson. It is a wonderful source of information and support for epilepsy sufferers in the area I represent. I hear about all sorts of obstacles faced by people with epilepsy. Very often local residents are diagnosed and then they and their families are left without any medical guidance or support, and we heard a little about that earlier. I was particularly upset to hear that Southend hospital has on a number of occasions refused MRI scans and other medical examinations.
I have received complaints regarding the prescription of generic drugs, despite evidence suggesting that their use leads to an increased risk of seizures. Even more alarmingly, I was informed that the latest drugs are not made available to patients, as older and less effective drugs are cheaper to use. That is just not acceptable. Local residents often get caught up in a confusing situation where the hospital says that they should speak to their GPs first, but once they contact their GPs there seems to be a reluctance to give any advice and they are told to turn to neurologists instead. There is clearly a lack of GP training in epilepsy.
Nationally, only 20% of people with epilepsy who are referred to see a specialist are seen within the NICE-recommended waiting time. Even worse, there is an 18% gap in the treatment of epilepsy, meaning that 18% of people with epilepsy who could attain seizure-freedom experience seizures unnecessarily due to a lack of appropriate treatment.
I want to touch on the issue of benefits, which the right hon. Member for Knowsley (Mr Howarth) also raised, because a number of people are adversely affected by the present situation. As we all know, the process of claiming benefits can be lengthy and stressful, which in turn can aggravate the psychological symptoms as well as the frequency and severity of seizures. What I am most concerned about is the ability of benefit medical assessors—they are rarely doctors—to recognise and appreciate the severity of epilepsy.
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In conclusion, I think that there is a role for the Government to play. We need more funds to be invested in medical research to ensure that more people with epilepsy can access effective treatments. Southend residents suffering from epilepsy should not be denied access to the various treatment I mentioned earlier. For too long epilepsy has been forgotten when it comes to funding and the variety of treatments available. It is time for the Government to hold CCGs to account to ensure that due gravity is given to this very serious condition. As my hon. Friend the Member for South Thanet passes the baton to the hon. Member for Walsall South (Valerie Vaz), I hope that in the next Parliament, whoever forms the next Government, we will do our very best to provide the best possible treatment for those who suffer from epilepsy.
4.28 pm
Grahame M. Morris (Easington) (Lab): I, too, congratulate the hon. Member for South Thanet (Laura Sandys) and the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this important debate. In common with many other Members, I would like personally to thank the hon. Member for South Thanet for the excellent work she has done. She might not thank me for a glowing tribute, given that I am on the left of the party, but I think that she is a thoroughly decent MP who does an excellent job. She will be sadly missed. I am perhaps a less active member of the all-party group on epilepsy, but I am a member of many other all-party groups, particularly those on health and cancer. This is a very timely debate. It is thanks once again to the Backbench Business Committee that we have been afforded this opportunity to raise awareness of this important and often misunderstood condition.
In a previous role—I was not double-jobbing, I might add—I worked in the national health service in an analytical chemistry lab where I used to do tests on anti-epileptic drugs using gas chromatography techniques, so I know a little bit about the chemistry but not so much about the clinical manifestations and symptoms. I pay tribute to the tremendous and powerful speech by the hon. Member for Wycombe (Steve Baker), which really brought home the potential risks of this condition if left unregulated. It is one of the most common neurological conditions in the United Kingdom. As the hon. Member for South Thanet said, 500,000 people in the UK, or one in 100, have the condition. That is a considerable number of people. As I think we are all aware by now, epilepsy is not one condition but a composite. Other Members have mentioned the suspected link with autism. There are about 40 different types of seizure and perhaps as many as 50 different syndromes with various degrees of severity and complexity. However, with the right treatment, the right medication and the right support, there is no reason why someone suffering from epilepsy cannot lead a full and active life, as the hon. Lady so ably explained.
Many Members have talked about access to medical care and stigma, but I want to stress another aspect—the discrimination that can be faced by those with epilepsy, creating barriers to education, and, more particularly, to employment. A report published by Young Epilepsy found that three quarters of people with epilepsy have experienced discrimination due to their condition. This situation was reaffirmed by work commissioned by the
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disabilities charity, Quarriers, which found that more than two thirds of people with epilepsy admit that they worry what members of the public would say or do if they had a seizure, with over a third expressing concern that having a seizure in public has led to anxiety about whether to leave the house, even, let alone take up employment. In relation to employment, more than seven in 10—72%—stated that their condition had an impact on their career progression and choice, with more than two fifths avoiding even telling people about their epilepsy.
There are protections in place for those looking for work and for those who are in work, but I am concerned that these duties and obligations are not being met by employers. Equality laws make it illegal for employers to treat people with epilepsy unfairly, and protection must be provided against bullying and harassment due to their condition. Employers also have a duty to make reasonable adjustments to help people with epilepsy to get into work, or stay there, and to prevent them from being at a substantial disadvantage. However, we have found that people with epilepsy have been shown to be twice as likely to be at risk of unemployment as those without the condition.
The case of Karen Guyott, which was mentioned by my hon. Friend the Member for Vauxhall (Kate Hoey), has been drawn to my attention before. To comply with the instructions from yesterday, I am, as it says in my entry on page 205 of the Register of Members’ Financial Interests, a member of the RMT parliamentary group, although it is unremunerated and the RMT is not affiliated to my party. It is important that we speak in this House on behalf of working people, and charities, and raise legitimate concerns. That example of someone losing her job is an important test case because, as my hon. Friend said, London Underground did not provide the training or support required.
I only have a little time left, so I want to put this to the Minister, who I know is a decent and reasonable man: at the conclusion of the debate, I hope that he will make it clear that it is unacceptable to discriminate against someone due to their having epilepsy. I hope that he will support people, such as Karen, who are fighting blatant discrimination. Will he agree to raise her case with the Mayor, because Transport for London comes under the Mayor’s auspices? TfL is a significant public sector employer, and we want it to be an example of best practice. Will the Minister meet a delegation of interested MPs to discuss discrimination and epilepsy at work?
4.35 pm
Martin Horwood (Cheltenham) (LD): I commend the hon. Members who secured this debate, and the Backbench Business Committee for bringing this very serious issue to our attention. I have found the debate genuinely shocking.
The statistics are shocking enough: 600,000 people in this country have epilepsy. That puts it on the same scale as dementia and Alzheimer’s disease, but it receives far less attention, perhaps because we feel that we are used to epilepsy and it is not that serious. Another shocking statistic is that 1,000 people a year die of
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epilepsy-related deaths, and most shockingly of all—this was mentioned by the hon. Member for Walsall South (Valerie Vaz)—42% of those deaths are preventable, in many cases with little more than good communication.
The debate is all the more shocking and upsetting for me because of the case of Emily Sumaria. Emily went to my junior school in Cheltenham, and attended the secondary school of the right hon. Member for Chesham and Amersham (Mrs Gillan), Cheltenham Ladies college. From there, she did work experience in Parliament with me for several weeks. I remember her as a brilliant young woman who had the kind of smile that lights up a room. Her mum, Rachel, describes her as