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Mr. David Stewart: You mentioned screening. Were you disappointed that the National Screening Committee did not recommend a national high-risk screening programme, and do you take some hope—
Mr. Deputy Speaker (Sir Michael Lord): Order. I remind the hon. Gentleman that he must use the correct parliamentary language.
Mr. Stewart: Does my hon. Friend agree that it is important that the committee consider the issue again and introduce high-risk screening?
Ms Taylor: That is an excellent point. The committee is in fact not too unsympathetic to much that is suggested in the Bill. Although the use of language is loose and open-ended, it recommends a screening process, while I am keener to say that that should be tightened up and controlled. That will be my next port of call in lobbying.
The Bill is aimed at the recognition of certain symptoms, including palpitations, black-outs and breathlessness disproportionate to activity, that suggest the presence of a disease requiring screening to confirm or otherwise. It requests an acceptance that a "relevant cardiac specialist" is required to supervise the screening process, implying an acceptance that specific and detailed research-based knowledge exists, so that an accurate diagnosis is possible. It requests an acceptance that a "relevant pathologist" is required when a sudden death has occurred, and thus an acceptance that in the case of inherited diseases such as hypertrophic cardiomyopathy, we need to know not only that the myocardium has become enlarged but that families will
be told the details that the pathologist has determined. That is equally the case with dilated cardiomyopathy and arrhythmogenic right ventricular cardiomyopathy.When sudden death occurs without warning or diagnosis of illness or disease or an awareness that the cause of death was an inherited gene, it is crucial that we gain more understanding and can give advice to relatives. The Bill provides for an invitation to screen first-degree relatives, those who are genetically related to people diagnosed with an inherited disease. The research guidance says that children have a 50 per cent. chance of inheriting the disease from parents, so we need experts to determine whether it was present and communicate the facts to relatives.
Communication of the cause of death by the professional groups to first-degree relatives or next of kin should include a support mechanism, a statement of the cause, and a pro forma confirming that the disease causing death was genetically inherited. All first-degree relatives would then be invited to attend an immediate screening process, which means that we would be behaving proactively, in the hope of a high take-up, with the aim of preventing potential life-killing diseases and saving lives.
The Bill is minded to acknowledge the heavy work load of all medics and suggests that, at all defined points of communication, a pre-written letter explaining the cause of death be made available—requiring only a named identification of the person who has died and the signature of the medic. A pro forma should include the medic's name, the name of the person who died and a request for all first-degree relatives to attend an immediate screening. Crucially, I have referred to countries such as New Zealand, which offer that service, but I want to make it equally clear to the House that there can be no insistence. The decision whether to take up the offers made by the medics is a matter for individual family members.
Throughout the Bill, there is an implicit acknowledgement of the significant amount of research knowledge about the details of the diseases with a potential to kill, and on the vital links in the chain of diagnosis of condition, which can be used as a screening process. Use of the language "relevant specialist" explicitly draws attention to that point. Additionally, the aim of the Bill is not to seek a national screening process, but a screening programme that immediately kicks in at the time when concern is expressed about the symptoms or condition that someone is suffering from. As I have said, it applies to first-degree relatives when an inherited disease is confirmed in one of its members at a time when a pathologist establishes the cause of death as an inherited disease.
The Bill, as I said, implicitly acknowledges the research-based specialist knowledge that exists, in the belief that it should be easily and universally accessed by cardiac specialists and pathologists. That knowledge informs an understanding of the disease that can cause death. It significantly informs a medical process that defines screening as the potential means to save life. The system of communication is not perfect—families use different GPs and are geographically mobile—but the mode of communication and the structures outlined in the Bill are significantly better than the current ones.
The Bill could have placed a further responsibility on GPs to establish a "family history", similar to a family tree with the genetic conditions indicated. Such information, if available, would most certainly pinpoint accurately those individuals who are at risk of inheriting a disease that has the potential to cause death. Such a family tree could ensure that from a young age, appropriate lifestyle and drug support could be suggested and utilised to manage the disease, with significantly increased competence to prevent a fatality. The suggestion of a family tree is not included in the Bill, but its efficacy is without doubt, which I hope will be acknowledged and eventually accommodated by the NHS.
I have taken a long time to outline—
Ms Taylor: My hon. Friend is too kind. I am well aware that I have taken a long time to outline to the House a very complex set of conditions and to express a clear hope that screening can be used to define and support families with certain conditions. As I said, sudden death traumatises families. Many—certainly the majority—fail to come to terms with the loss of a young daughter, son, father, mother, brother or sister, especially when they believe that their symptoms were disregarded or undiagnosed and their conditions left medically untreated.
In the Cardiac Risk in the Young (Screening) Bill, I have attempted to outline and use the practical knowledge and research of a small number of highly qualified and respected cardiac specialists. That information has informed the content and structure of the Bill's clauses.
The work of the cardiac specialist, Dr. Sanjay Sharma, supported by the academic physiologist Dr. Greg Whyte, has centrally informed the content of this Bill. In their working lives at the University hospital, Lewisham and the English Institute of Sport, they have gathered information on symptoms that suggest the existence of conditions that have the potential to be fatal. Additionally and importantly to the Bill, they have produced research-based information that positively shows the value of screening by a relevant specialist to diagnose potentially fatal diseases as well as to prescribe a lifestyle or medical treatment that will control the condition and significantly reduce—in some cases eliminate—its potential to kill.
I am indebted to Dr. Sanjay Sharma. His advice has been indispensable, his medical knowledge central to a Bill that, if adapted or accepted, could support the achievement of a universal national service for people who are at risk in order to diagnose a potentially killer disease. I hope that the Minister will acknowledge that that information has come from a specialist in this medical field.
My final word of thanks is to the charity Cardiac Risk in the Young. The support I have received from its chief executive, Alison Cox, has been persuasive, creative and very thoughtful, and the Bill would not have surfaced without her support. The members of that charity, mostly families who have suffered the loss of a loved one, have equally provided an abundance of support. I am very grateful to them all. They, along with my close
friends the Morland and the Bowen families, have been the source of inspiration for the Bill. I will be eternally grateful to all.I am grateful to the Minister for the time she and her officials have spent debating the issues and advising me about the content of the Bill. My only request to her as I end my speech is that she wholeheartedly supports the intention of this Bill and sees the veracity and efficacy of screening to define and explain conditions and symptoms in the hope that the definitions and diagnosis can establish treatments that will save lives.
10.57 am
Mr. Eric Pickles (Brentwood and Ongar) (Con): I am grateful for the opportunity to make a brief contribution to the debate on the Bill. It is a pleasure to follow the hon. Member for Stockton, South (Ms Taylor) and I hope that she will not mind my gentle teasing when I say that I was a little concerned that she might be about to enter parliamentary history by talking her own Bill out. However, she made a powerful and important speech, following an earlier equally powerful speech on Wednesday night at the CRY reception. She has gone in considerable detail into the various complexities of the problem, and the whole House is grateful to her.
I apologise to the hon. Lady, to the Minister and to my hon. Friend the Member for Westbury (Dr. Murrison) because, on account of a constituency engagement, I doubt whether I will be able to be in my place for the wind-up speeches. It is my intention, however, to stay for as long as I can.
I particularly welcome the commitment that the hon. Lady received from the Chairman of the Health Committee to hold hearings and an inquiry into the problem. If Select Committees are designed to achieve anything, it is to give the sort of precise forensic analysis and scrutiny that the hon. Lady displayed in her speech. I have the honour to be one of the sponsors of the Bill. I was going to say that two people persuaded me, but it was three because, as we have learned this morning, the hon. Lady can be very persuasive. It is an honour to lend my name to her important Bill. As my moment in the sun disappeared last Friday, it is appropriate for me to say that her Bill is the most important of the whole batch of private Members' Bills in this Session.
As I said, I wanted to speak in this debate because of two constituents, one whom I knew very well and one of whom I did not have the honour of meeting, although I have met his very brave mother and, this morning, his father. The first person about whom I wish to speak was my friend, Alan Gunnell. He was a young, serious man who was involved in the local party when I was first selected for Brentwood and Ongar in the early 1990s. We had an instant rapport. He was the kind of person most of us know from our local parties—serious and interested in politics. However, there was another side to Alan that I will long remember: he was a gifted mimic and he had a wicked sense of humour. He was one of those people to whom politics came easily. He had a natural rapport with the community and he was eventually selected to stand for a seat on the local council, which he won with enormous aplomb, such was his reputation.
A few short days after his second election, Alan sadly died. He did not turn up to an association event on a Sunday, which was unusual. We wanted to talk to him about various issues, so some of us left jokey messages on his answering machine. We did not know that Alan had passed away the previous evening. We did not find out until the Monday morning.
Alan was an only child and his parents were devastated. The effect of Alan's loss among his circle of friends was a deep sense of grief that continues to this day. A room in the local community centre was named after him, and life goes on. Only a few months ago, I held a surgery in the Alan Gunnell room at Tipp's Cross. I asked one particular constituent if there was anything else I could help her with. She said, "Yes, who was Alan Gunnell?" At that point, I felt a deep sense of anger, not at the constituent, because—as hon. Members will know—that way lies the route to madness, but because Alan should have been there. He should have been with me at that surgery. He was a man of great promise who did enormous things. He would probably have ended up in this place, and his loss is a loss not only to his friends, but to the wider community.
The second constituent, whom I did not have the opportunity to meet, was a young man called Ashley Jolly. Ashley was just 16 years old when he died in May 1998. He was a physically fit young man—as the hon. Member for Stockton, South said, that is often a characteristic in these cases. He played football from the age of six, he was a distance runner and he did the London to Brighton bike ride with his father. Ironically, he was awarded a prize for never having any time off school for illness. The day he died, he had a happy, peaceful day tinkering with a go-cart with his father. He went to bed, but he did not get up.
Ashley's parents were told that he had almost certainly died from asthma, and that was the verdict of the post-mortem. However, his mother is a remarkable woman and she realised that the verdict was not right. She looked on the web and made inquiries. She began to understand what had happened and informed herself about the electrical workings of the heart. She started a website and others wrote to it. She discovered an organisation called the Sudden Arrhythmia Death Syndromes Foundation—or SADS—in the US, and there are similar organisations in Australia and Canada. She took the brave step of forming the UK branch of SADS and organised a seminar to discuss the issues with other charities concerned with the problem of cardiac arrest. Another conference will be held in June at the Oxford genetics knowledge park.
Ashley's mother was later joined by Penny Hurrell, whose daughter Louise I mentioned in an intervention in the hon. Lady's speech. Louise was 12 years old when she died. She had had Wolfe-Parkinson-White syndrome since she was a toddler, but the family had been told that there was nothing wrong. A simple treatment could have ensured that she lived a long and happy life.
A common myth exists that if one is diagnosed with a condition that causes sudden arrhythmic death, one has no alternative but to wait to die. As the hon. Lady clearly demonstrated, that is not the case. The treatment is often simple and does not mean an invasive operation, but a course of drugs.
We meet at a time when our nation's attention is focused on the tragic deaths in a terrible terrorist attack in Spain. We have met on many occasions after accidents on our railways or on the roads. As my constituent Anne Jolly said to me yesterday, "If all our children had died on the same day, there would be a public outcry. Because they happen in isolation, we often feel abandoned by the system." The Bill offers a chance to end that feeling.
The hon. Lady said that the conditions that she was talking about are rare, and that is right, but they are not uncommon. I was very struck by discussions with fellow MPs in the Tea Room and at the reception on Wednesday, because it was clear that most of us know of such cases. Most of us have not just a constituency connection, but a personal connection to the issue. The hon. Member for North Durham (Mr. Jones) asked the hon. Lady for information about what is happening in other countries, but the truth that we have to come to terms with—and it is not easy—is that if we were Italian, French, Canadian or Australian we would have a better chance of surviving such conditions than as British citizens. That is a result not of policy, but of a combination of ignorance and neglect. These illnesses have been a hidden killer that we have not entirely understood. Families have been robbed by these illnesses, and so has society, of bright young people who should have lived full and happy lives.
The hon. Member for Tynemouth (Mr. Campbell) asked, "What is young?" That set me thinking about the common factor in all these deaths: shock. Such deaths should not happen to a young healthy person, an athlete, someone who receives awards for never taking time off. Doctors simply do not believe that anything could be wrong when such a person goes to see them. The Bill offers us a chance to address that reverse ageism, to ensure that young people and families, like all of us, have the right to enjoy a long, happy and productive life.
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