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Ms Taylor: Yes, those charities make an excellent contribution. I am only too pleased to be associated with all the work that the Down's Syndrome Association has done. I hope that my charity, Cardiac Risk in the Young, will be equally successful. We are here to try to persuade the Minister that we should be recognised.
I shall return to the examples that I was giving to the House. David Staff, aged 17, who lived in Blackburn, the constituency of my right hon. Friend the Foreign Secretary, was found to have suffered from hypertrophic cardiomyopathy. He was a runner and his father was the marshal of the race that he was taking part in when he died. These are cruel details, but hon. Members must try to get their head around them. Christiaan Smith, aged 24, from the Gower constituency, was told that he was suffering from flu symptoms. A few days later, he was found slumped at the bottom of the stairs. His mum, Pauline, said:
- "Our buoyant, effervescent son, so full of life, had died from a condition called myocarditis."
David Elliot, aged 24, lived in the constituency of my right hon. Friend the Prime Minister. This young man was an international triathlete. He died from an undiagnosed heart condition. His sons are now receiving periodic testing from a special paediatric cardiologist, and they will continue to do so until they are 20 years old, so I am delighted to be able to say that something positive has come from the tragedy in the Elliot family. Jim Lorrimer watched his sister's daughter die from hypertrophic cardiomyopathy, an inherited condition that nobody thought could impact on other members of the family. He then watched his 25-year-old son die from the same condition.
I could go on to list many more young people who have died. They were usually athletic, and many died from a hypertrophic cardiomyopathy, which is clearly detectable by screening. Their symptoms were regularly ignored, and neither they nor their first-degree relatives were tested.
Mr. Alan Campbell (Tynemouth) (Lab): My hon. Friend has listed a number of cases, each one a tragedy in its own right. If I understood her correctly, the age range of the people involved was between 12 and 31. Can she tell us how she defines a "young person"?
Ms Taylor: I am not in line to define what a young person is. I think that I am pretty young at 60, frankly.
[Hon. Members: "Hear, hear!"] Thank you very much. I appreciate that warm and welcome—and, of course, accurate—response. The medical profession defines people under 35 as young. Because they are young, and especially if they are in their teens or early 20s, it is assumed to be improbable that they could have a serious heart condition. That is the message that I hope to transmit to the House today.I could outline many cases to the House; all of them are tragedies. They often involve people who were athletic, and whose condition was either undiagnosed or misdiagnosed. In many cases, no treatment was given. The condition is often inherited, but many first-degree relatives do not receive an invitation to be screened and therefore remain unaware that they might have a fatal condition.
Each death sends shock waves round a community. The positive response to the Bill has been widespread. Relatives and friends are desperate to make sure that no one else has to suffer the sudden death of a loved one. I pay tribute to the dozens of relatives and friends who have campaigned for action. Many, if not all, are active in the charity Cardiac Risk in the Young, a body that has focused attention on this issue, organised research, lobbied Members of Parliament and provided central support to the achievement of the Bill. It has been, in part, the inspiration for today's debate. Many of the people involved have written to their Members of Parliament, to the Secretary of State for Health, to the Minister herself, and to the Prime Minister, to say how desperate they are for the Government to support the Bill.
The all-party group on cardiac risk in the young has been outstanding. It has publicised the Bill to families through newsletters and through its website. Even the YMCA, which I managed to contact through my close friend, Councillor Louise Farthing, has taken up the initiative through its parliamentary officer, Rob Smith. It has sent out updates in its newsletter, "In Touch", and many of its members have written in. The response to the requests from the YMCA has been very positive. As I have said, newspapers cover the problem in ways that are distinct to their readership, and there are many examples of newspapers stating—perhaps implicitly, rather than explicitly—that a young person's death from an undiagnosed cardiac condition is an indictment of the medical profession. The campaigning has been widespread, because the impact of sudden death in the young is so widespread.
I am pleased that the Bill has received the support of nearly 100 Members of Parliament, all of whom were prepared to say their piece today. I am absolutely delighted that so many colleagues from both sides of the House are here. I have also received positive comments from the Chairman of the Health Committee, my hon. Friend the Member for Wakefield (Mr. Hinchliffe), who has wished the Bill every success. He has supported its passage and kindly given his advice. He has also promised me that if the Government respond positively to the Bill, he will persuade the Health Committee to carry out an investigation into cardiac risk in the young. He will also carry out an investigation into how the medical community responds to the problem. I thank him for that incredibly positive offer.
Last Wednesday, a parliamentary reception filled the Terrace dining room. More than 200 people attended, including more than 50 Members of Parliament. There were positive speeches from the Minister of State, Department of Health, my right hon. Friend the Member for Barrow and Furness (Mr. Hutton), the shadow Minister for Health, the hon. Member for East Worthing and Shoreham (Tim Loughton), the ITV sports presenter, Jim Rosenthal, the chair of CRY, Greg Whyte, and the founder and chief executive of CRY, Alison Cox. They all made powerful and interesting speeches. Of course, I was persuaded to speak for two minutes, which I did, as I never want to take a liberty.
Tim Loughton: It was a long two minutes.
Ms Taylor: We should not be picky over time.
I want to reassure the House that the Bill refers to two factors: the typical medical response to symptoms that suggest a potentially fatal condition, and the known and proven value of screening that prevents conditions resulting in fatality. From the research and experience of a small number of highly qualified specialist cardiologists, knowledge of the diseases that can cause sudden death is available and has been published in reputable journals. That provokes me to ask why if this knowledge is available, it is not used to inform medical diagnosis and prescribe medical responses?
A desired procedure exists that can respond to problems that can cause sudden death. First, when an individual presents early symptoms to a GP, which could include fainting, disproportionate breathlessness or palpitations, he or she should be referred for screening to a relevant cardiac specialist. Secondly, the specialist, who would have detailed knowledge of cardiomyopathies, ion channelopathies and other conditions listed in the Bill, would perform the screening and pick up those conditions. He would be able to see an extended QT interval for Long QT syndrome, or an enlarged myocardial wall for hypertrophic cardiomyopathy. With careful and expert involvement in diagnosis, such definable problems will be seen using a straightforward screening procedure. Thirdly, a patient's first-degree relatives would be involved, so that they understand that the disease has a genetic relationship to the rest of the family. Clearly, these diseases are life-threatening, and such an inherited condition should be understood by family members.
Tim Loughton: On the point about inherited disorders, does the hon. Lady acknowledge that a particular problem exists in relation to looked-after and adopted children, in which both she and I have a particular interest? It is incumbent on those involved to pass on medical records for children placed in care, and to make available to the relevant authorities the records of the birth parents of adopted children.
Ms Taylor: Again, that is an excellent contribution. The hon. Gentleman speaks to my heart, as I am sure that he realises that my daughter is adopted. We have a full medical record of her family, and we understand exactly what conditions could have impacted on her. Of course, my daughter also knows her natural family, which makes that relationship so much easier. It was a worthwhile intervention.
The conditions outlined in the Bill are rare—I have no problem in admitting that. I also have no problem in stating that invariably cardiac specialists are used to examining a different generation of people with different heart problems. That is one of the problem areas—because their surgeries are chock-a-block with the over-40s and over-50s, sadly, they are missing telltale signs. While screening is simple and cheap, it also requires a relevant specialist who has an understanding of cardiomyopathies and ion channelopathies, and such specialists, who know what they are looking for, must be given the opportunity to look for those conditions when symptoms suggest that they exist.
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