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11.52 am
Dr. Julian Lewis (New Forest, East) (Con): Sometimes there are visual images that stick in the mind from a film, a television programme, a documentary programme or a memorial programme. One of those occurred some years ago, around the time of Armistice day. I think that it was a film by Ken Russell. Towards the end, the camera zoomed in on one of the thousands of graves in an allied cemetery in Flanders. There was some music playing, and gradually the camera began to pan along the tombstones. The music speeded up, and the camera went on and speeded up. By the end of the programme, the camera was moving along a line of tombstones with no end in sight. One was left with the impression of a terrible roll call of bereaved families who had lost young people, in large part unnecessarily.
I was reminded of that image while listening to the hon. Member for Stockton, South (Ms Taylor) when she introduced her Bill. She should make no apology to the House for having taken some time to do so, because she was giving the equivalent of that camera image: she gave a roll-call of young lives that had been snuffed out, in many cases unnecessarily. I am proud to be a sponsor of her Bill, which endeavours to save as many young lives as medical science possibly can from such a cruel fate.
As well as paying tribute to the hon. Lady, I pay tribute to the hon. Member for North Durham (Mr. Jones), whose contribution I look forward to hearing if he is fortunate enough to catch Mr. Deputy Speaker's eye. He took up the mantle of forming the all-party parliamentary group on cardiac risk in the young, of which I have the privilege of being vice-chairman, while he has the burden of doing the work. I think that he would agree that it is significant that every speaker so far has come to the House motivated not by some general analytical interest in, or specialist knowledge of, the subject, but invariably by some personal experience of it.
In my case, as I explained on 21 June 2001 when I had an Adjournment debate on cardiac risk in the young, it was because a young constituent of mine, Adrian Woodhead, had come to my surgery and told me of the loss of his wife, Sarah, at the age of only 28. She was a young lady who had everything in front of her and who had the typical profile of not having any history of ill health, being immensely fit and strongly athletic. She died suddenly and without warning.
I said to the House then what Adrian said to me, and I repeat it now, with the indulgence of the House. He said:
- "'I expected the house to be full of noise and life, as you get from children, not silent through death and loneliness . . . There is no structure to my life except for my work and my efforts to ensure that someone else might not have to go through this . . . I can do things for other people, but I can do nothing for myself.'"—[Official Report, 21 June 2001; Vol. 370, c. 273.]
One of the things that was explained to me by Alison Cox, who has justifiably been singled out for immense praise in the debate for her pioneering work in founding Cardiac Risk in the Young, was that the reason why it was difficult to create a groundswell of opinion about the problem was that, first, it was unexpected when sudden death syndrome struck; secondly, there were few survivors of it; and thirdly, therefore, anybody who might do anything about it would probably come from a family who had experienced a shocking bereavement. What a tribute it is to those families that so many of them have turned shocking loss into positive action. Once those groups sprang up, we found no end of examples of tragedy striking in that way, and because people were beginning to articulate it and organise around it, tremendous progress has been made. In response to the debate in June 2001, the Government pledged substantial funds to Cardiac Risk in the Young, which it received and put to good use in its pilot programmes for screening.
Although the work that has been done and the awareness that has been raised are admirable, the Bill is an essential further step, because we have to ensure that where tragedy strikes, it is not then unnecessarily multiplied. A key provision of the Bill is to make certain that the families of those who have been afflicted by sudden death syndrome are automatically screened. There is no excuse for not doing that when lightning has already struck.
Earlier, we heard a question about what happens in other countries. It is worth sharing with the House the background to how Alison Cox came to be involved in her campaign. She was aware that, back in the 1970s, a well-known rising tennis star called Karen Krantzke had died as a young woman. About 20 years later, Alison's son Steven was on the verge of a promising sports career and had won a sports scholarship to a university in America. Because of previous litigation, that college had established a screening programme. For that reason alone, it was discovered that Steven Cox—whose father was the famous tennis player, Mark Cox—had one of these conditions. That discovery almost certainly saved Steven's life, as I am sure that he would acknowledge if he could hear me—which, although I am not supposed to mention it, I believe he can. Alison was inspired to do something about the situation because she saw how little progress had been made in the period between the death of young Karen Krantzke and the narrow escape of young Steven Cox. I salute her for what she has done.
As for comparing this country with others, I can throw a little light on that by citing the example of Germany. At the time of my Adjournment debate in June 2001, there were only 17 implants per million citizens in this country, but more than 60 per million in Germany and more than 200 per million in America.
Does screening help? One of the matters that caused me some concern at the time of the debate was a ministerial letter replying to Earl Howe on 8 May 2001, which, although designed to be helpful, stated that
- "screening does not identify all those affected"—
- "there is little evidence at present that treatment before the onset of symptoms alters the course of the disease."
There remains the ethical question of whether parents of children who are at risk of sudden death syndrome want to know whether their children are susceptible or would rather not know, given that, in some cases, the onset of the attack will nevertheless be unavoidable. Alison Cox told me that, of the hundreds of people affected by cardiac risk with whom she had dealt, only one mother said that she wished that she had not known that her child was vulnerable. Far more typical of people's reactions was that of my constituent, Adrian Woodhead, who said:
- "It doesn't matter what condition you have—you just deal with it. But to deal with it, you've got to know."
I conclude on a happy note. Several references have been made to the reception two nights ago on the House of Commons Terrace that I sponsored together with the hon. Members for North Durham and for Eastleigh (Mr. Chidgey). Towards the end, I was delighted to find that my constituent, Adrian Woodhead, was present, and he approached me. He had rebuilt his life and was accompanied by his charming girlfriend, Jenny, who proudly wore a badge that stated, "CRY supporter". We are here debating this important Bill only because of the spirit of people such as Adrian Woodhead and the other fine families to whom so many hon. Members have referred.
I congratulate the hon. Member for Stockton, South on promoting the Bill and Alison Cox on founding CRY. Above all, I congratulate the relatives and the survivors, to whom we all owe so much.
12.6 pm
Mr. Kevan Jones (North Durham) (Lab): I support this important Bill and congratulate my hon. Friend the Member for Stockton, South (Ms Taylor) on promoting it. The hon. Member for Brentwood and Ongar (Mr. Pickles), who unfortunately cannot be in his place, made a moving speech. He summed up the matter well when he described his sense of loss of his friend, Alan. As the hon. Member for New Forest, East (Dr. Lewis) said, many hon. Members come to the subject through experience of personal tragedy.
I congratulate the hon. Member for Cheltenham (Mr. Jones) on his graphic and sometimes amusing description of his difficulty with heart disease. He gave an insight into the benefits of the health service and the debt that he and many others owe to hard-working health service staff.
My hon. Friend the Member for Stockton, South highlighted not only a condition that leads to sudden death in young people, but the fact that each death is a
personal tragedy for the affected family. It is always difficult for a family to deal with sudden death that takes a loved one. It is even more difficult to come to terms with the death of a young person. As other hon. Members have said, the anguish and sense of loss is compounded when medical authorities cannot explain why a fit, healthy young person suddenly dies. That adds to the emptiness, and to the questions that the family has to ask. We all want logical answers to the question of why things like sudden death happen. Often, families are simply left to ask why and to question what could have been done to turn the clock back. The Bill makes a practical suggestion for helping to prevent such tragedies from occurring in other families.I, too, came to the subject through a personal tragedy, which friends, Jeff and Sandra Morland, suffered. They are also good friends of my hon. Friend the Member for Stockton, South. Their 22-year-old son died just after I was elected as a Member of Parliament. Jeff, a full-time trade union official, is a good friend of mine from the trade union movement in the north-east. He is a proud father of three and head of a close and warm family. Levon was a twin and a young man who had everything to live for. He was an outgoing, bubbly and popular character with a sense of humour. In the past few years, the family have had to deal with tragedy and sense of loss. It has been heartbreaking to watch.
Levon suffered from shortness of breath for the first time when he was 12 years old. One minute, he was feeling fine; the next minute, he was breathless, as though he had been running. The first time this happened it lasted only a few minutes. Over time, however, it took him longer and longer to recover his breath. After a few months, his parents took him to see his doctor. He had a series of tests and was diagnosed as having Wolfe-Parkinson-White syndrome. Levon's twin brother, Aran, was also tested but found to be clear. The fact that they were identical twins makes it even more difficult for Levon's family and friends to deal with his death.
I have here a letter written by Aran shortly after Levon's death. It begins:
- "To My Big Brother, a letter from the heart."
Aran describes how, at the age of 18, Levon went to be a travel rep in Magaluf. He describes his brother as being full of fun and the
- "life and soul of the party".
Levon had regular check-ups, and it was explained to him that he could have an operation. It was also pointed out to him, however, that there was a 10 per cent. chance that he would not survive the operation. Aran explains in his letter that Levon's approach to this was to say,
- "What's the point? It's not worth the risk."
Levon's thirst for life led him to go travelling in north America. Unfortunately, he suffered another, more serious attack when he was in Mexico. This time, it lasted for three hours. On his return to the UK, however, his desire for life and his bubbliness and strength of character were undiminished. One of the last things he told his brother was that his ambition was to appear as a contestant on the popular TV show, "Big Brother". Sadly, he did not realise that ambition.
The final part of Aran's very moving letter describes the dreadful circumstances in which he found his twin brother dead in bed, still wrapped in his bedclothes. He had tragically died while suffering an attack in his sleep, his heart finally having given out. I do not think that any of us can comprehend the anguish that the family has felt, and which Aran has so movingly described in his letter, although the letter gives us an insight into the effects that each of these tragedies has had on the family and others who are close to the individuals who die. Aran also says in the letter that he was unaware that anyone could die from Wolfe-Parkinson-White syndrome.
The anguish that Aran's family has felt is also felt by four other families in this country every single week. Some people, like Levon, are aware that they have a heart condition. Others simply collapse playing sport, or, like Levon, die in their sleep. That is why this Bill is so important. We must get screening for these conditions, because, as other Members have said, they are detectable and treatable. What makes me angry is that young lives are being lost unnecessarily when treatment can be offered.
The hon. Member for New Forest, East mentioned the CRY reception that we held on Wednesday night in the Terrace marquee, at which I was honoured to meet some young people who had been screened and had received treatment, and who were now living ordinary lives and looking to the future—walking, living, breathing examples of the success of screening. The hon. Gentleman also referred to screening in other countries. In the United States, for example, it is a matter of routine that young people must go through screening before they do competitive sport, which the compensation culture there may have forced to happen. The Bill is not asking for screening of the whole population; it is asking for screening of those who are potentially at most risk. If that can be done in Italy, other parts of Europe and the United States, it must be possible in this country. The Bill proposes a proactive approach, and if we do not introduce that in this country, the same numbers will continue to die each week of what are treatable conditions.
I stress the importance of publicity, to which my hon. Friend the Member for Sheffield, Heeley (Ms Munn) referred. It is important that we publicise the conditions and where to get information on them. I also pay tribute
to CRY for the support that it gives to families and for raising awareness. If today's debate does nothing else, I hope that it puts this matter on the national agenda. As someone said earlier—I am remiss in not remembering whom—if all these people were dying at once, and we collected the figures nationally, there would be a national outcry to get something done. I am determined to keep campaigning to highlight this tragedy, which affects too many families.I pay tribute to the CRY charity for its campaigning work, and particularly to the tireless work of its chief executive, Alison Cox. She can be a demanding individual on occasions, but this is an issue about which she feels passionate, and it is a credit to her and the families involved that we are getting some publicity and some progress in terms of research and getting something done. I must also give credit to them for the funding being raised for research and the screening that is being introduced across the country. They have also—because Alison is not someone who goes away easily—battered the door of the Department of Health, and a grant was awarded last year that has gone a long way to help to set up a network of bereavement counsellors who can give support to those who have lost young people in this way. That has been a good use of the money, and has provided support to many people who, as my hon. Friend the Member for Sheffield, Heeley was saying, do not know where to go to get support.
Reference has already been made to the all-party group on cardiac risk in the young, and I give my thanks to the hon. Member for New Forest, East for his support, to my hon. Friend the Member for Stockton, South for her work with the group, and to all Members who have supported us since we have been in existence. Keeping up the pressure and keeping the momentum going will make sure that we get this subject to the top of the political agenda, that we get funding for research, and that we get the screening for which the Bill calls.
Let me return to where I began, with the tragic death of Levon Morland. The hon. Member for New Forest, East pointed out that many families in tragic circumstances gain strength through campaigning and fundraising. I pay tribute to Jeff and Sandra Morland and their family and friends, who raised more than £70,000 in Levon's memory to fund research and screening. It would be remiss of me, and I would be chastised by my hon. Friend the Member for Stockton, South, if I did not also mention Jack Doyle, a former trade union colleague of hers and mine, who has worked tirelessly with the Morland family to raise money at charity events throughout the north-east. Through that association he has been of great assistance to CRY.
When I was elected to Parliament, I said that it was a very humbling experience. Coming face to face with people such as Jeff and Sandra Morland, who have lost young ones, is far more humbling. Nowadays, many people ask politicians whether we can make a difference by being here. Today this Bill gives us an opportunity to make a difference—not just to honour the memory of individuals like Levon Morland, but to give the chance of life to thousands of young people who, but for our intervention, would not have a future.
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