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10 Jun 2008 : Column 7WH—continued

It is incredibly important that Alison Cox is a member of the expert committee. She is also the chief executive of CRY. It is impossible to say no to her. She is a fighter in every sense. If she thinks that what is happening is not appropriate, she will say so; and if it is appropriate, again, she will say so. I am delighted that she is a member of the committee. She is taking up the counselling process for all. Counselling takes place when a young person has died. We can all imagine how highly charged and emotional the situation can be. She goes in with her
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team and enables others to go in with their teams to explain and, we hope, to prevent the disease from occurring again.

Roger Boyle, another member of the national committee of experts, and Alison Cox have achieved—quite painfully, and with a serious fight—the recognition that cardiac risk can occur in the young and an understanding of why it occurs. That is a tremendous step forward. However, my hon. Friend the Member for North Durham is right that there is still scepticism. The absolute belief is that, to have a heart attack, one must be 50, fat and smoke fags. It is not true. One can be 15 and a seriously good athlete, with an inherited heart condition that could be fatal. It is about getting that understanding and that perspective. It is difficult to believe that someone who is so superb at his or her sport can have an inherited fatal condition.

Achievements to date have been excellent. I praise the work done on Teesside, most particularly at the James Cook university hospital in Middlesbrough. When my Bill was introduced and accepted by the Department of Health, the hospital had one electrophysiologist; it now has three. That is a great improvement. It widens access to specialist electrophysiology treatment, which is valuable. A cardiac genetics programme is also up and running. As I said, most cardiomyopathies are inherited, so the genetic relationship is crucial. That programme will therefore enable an understanding that, in some cases, but not all, genetics is the problem. Again, it is an incredibly valuable bit of kit.

Specialist nurses are being employed to support cardio-physiologists. Again, their work filters out into the community; it is explained to groups, young people in schools and parents what could happen if a young person has palpitations disproportionate to the activity that he or she is involved in.

We also have an arrhythmia clinic—a tremendous innovation. Sadly, it is available only in Redcar and Cleveland. I wish it were universally available, because it has a nurse-led team to do the screening. They support the work of the GPs, enabling them to understand when a problem is serious. They are incredibly valuable part of the complex delivery of treatment.

It would be totally inappropriate not to mention the charity, South Cleveland Heart Fund. The group works in the most persuasive way to raise funds. It has provided the James Cook hospital with an evoked potential mapping computer programme, which quickly diagnoses the problems being suffered by young people. It is a most valuable piece of kit. I offer the charity a big thank you; it is deserved. Again, however, a charity is raising funds to deliver essential national health service machinery. I do not criticise, but it tells us that, despite all the money that is being invested in the system, it still does not provide the answer.

The developments that we have seen in Middlesbrough are most valuable, but we still have a shortage of cardiac physiologists. There is a training process, but people have to be persuaded to become involved in that area of medicine, and a job still has to be done to achieve a full complement of cardiac physiologists.

In the past four years, we have seen the all-party group on cardiac risk in the young working in a very persuasive way. We are delighted with the work of the
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Department of Health. The committee of experts is an incredibly valuable addition. Chapter 8 of the national framework is valuable.

It is disheartening that a tragedy should have been needed to persuade Parliament and the medical profession to take seriously the fact that young people can have fatal heart conditions. I wish it were not the case, but I hope that Levon Morland’s family will accept that his tragic death has made us all wake up to the fact that we should include in the legislative programme the delivery of good health through a screening process and that we should have a greater understanding of what happens when sudden death occurs. I hope that the family accepts that it was not for nothing. It was not an accident but was caused by a fatal heart condition.

10.9 am

Annette Brooke (Mid-Dorset and North Poole) (LD): I congratulate the hon. Member for North Durham (Mr. Jones) on securing the debate and on his work for the all-party parliamentary group on cardiac risk in the young. I was pleased that he highlighted early-day motion 617 on arrhythmia awareness week, which was tabled by my hon. Friend the Member for Hereford (Mr. Keetch). I pay tribute to the hon. Member for Stockton, South (Ms Taylor), who has brought her usual passion to the subject today. She always carries me along with her.

Sometimes, we parliamentarians think that we do not make much of a difference, but this is an example of making a real difference by working together with charities and the Government. I congratulate all the charities involved, many of which arose out of an incident in a particular family—those families, who have suffered, have shown great leadership and support. Obviously, we are going to refer mostly to Cardiac Risk in the Young, but I should like to acknowledge the many kinds of fundraising throughout the country to purchase equipment and push for change. It all adds to the partnership.

As well as the high-profile sports cases that hit the national news, I am sure that many of us know of cases from our local areas. A rugby team from our local comprehensive school was touring in New Zealand a few years ago when a sixth-former suddenly died during play. Distance added to that tragedy and made the situation more difficult to cope with. It affected the whole of the community that the school serves.

The precise incidence is difficult to quantify, but CRY has estimated that eight young people die every week of unexplained cardiac arrhythmia—400 per year—and throughout, it has continued to campaign for universal electrocardiogram screening of children.

We know that a number of types of cardiac disease affect young people and that symptoms and severity can vary from person to person—some patients never have symptoms. Sudden arrhythmic death syndrome can cause unexpected sudden death during or after excessive exertion. The reason for the onset of symptoms is not really known, and no particular symptom or complaint is unique. Many do not even realise that they have a disease—not until a member of a family presents are other family members screened and found to have a condition. The disease can be hereditary, so if a parent presents, there is a 50 per cent. chance that each child will have the disease.

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Statistics show that the loss of a child is the hardest loss for families to bear. More than half of marriages in which a child dies break down. In cases of chronic illness, families have the opportunity to prepare in some way for the loss of a child, but because the heart abnormalities responsible for cardiac death in young people often cause no symptoms before sudden death, there is additional shock. As Professor William McKenna, who set up a clinic at the Heart hospital, has pointed out, SADS deaths are preventable and their impact is disproportionately severe. He said:

The average age for sudden cardiac deaths is 17. I have been re-reading the 2005 national service framework for coronary heart disease—chapter 8—and it is fascinating to see how much of what we are saying today is in it. For example, the aim of quality requirement 3, on sudden cardiac death, is

As the hon. Member for Stockton, South said, as well as the medical side of the matter, the bereavement package is absolutely vital.

National policies for heart screening vary from country to country—I was interested to hear the hon. Member for North Durham describe the Italian situation. In Greece, children are monitored from the age of four until adulthood, and in Japan, all schoolchildren are screened and given ECGs. I accept that screening across the board may not be feasible, but screening even of high-risk individuals is lacking—perhaps it is a postcode lottery, but I am not sure. All children with a family history of sudden cardiac death should be screened, as should children and young people who complain of palpitations and feeling faint.

Because the symptoms relating to sudden cardiac death, for example fainting or shortness of breath, are easily attributable to something else, such as asthma—it is easy to put that label on conditions these days—it is thought that the statistic of eight apparently healthy young people dying each week could be conservative. When the cause of death cannot be detected during a post-mortem examination, the inquest verdict can be incorrectly recorded as, for example, accidental death, asthma, epilepsy, which is sometimes misdiagnosed, or drowning.

CRY has campaigned for the screening of all secondary school pupils and offers screening to that group. When the Government issued their first NSF in 2000 describing the rights of patients, they did not acknowledge SADS, perhaps because only eight young people die of it each week, compared with the nearly 2,000 who are killed by coronary heart disease in the same period. Thanks to the work of CRY, the hon. Member for Stockton, South, who has shown great leadership on the matter, and many others, the chapter on arrthymia was added to the 2005 NSF.

I should like to pick up on some of the points that the NSF makes because, as has been said, a lot has been achieved in raising awareness, but it would be foolish to pretend that we do not have a long way to go. I compliment what has happened, but it is my job, on behalf of the Liberal Democrats, to ask the Minister where we are and what are the plans to take us forward.
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The NSF states that

However, that statement was made in 2005. Will the Minister give us an update on how many specialist blackout clinics are in operation? What processes are in place to encourage referrals for GPs, accident and emergency staff, and other specialists?

When I looked on the internet last night, I saw that a blackout checklist has been developed by Syncope Trust and Reflex Anoxic Seizures to help doctors and parents. How widely is it used? The framework also said that the majority of those cardiac deaths are genetic. How far are we proceeding on genetic testing?

The markers of good practice for children and young people state:

How far are we moving along those lines? It is of course important to take on board the needs and wishes of the young person at age 16.

On delivering services locally, which was referred to, there are many occasions when the strategy at the centre is excellent, but we do not see changes on the ground. There is a long section in the NSF on what should be happening. It mentions


It says that:

and mentions the idea that

and so on. My real questions, therefore, are where are we on the implementation of the framework and what plans do the Government have to take things further?

As has been mentioned, targeted screening has received some Government support. In February 2008, the Secretary of State for Culture, Media and Sport spoke at the 11 Downing street launch of the targeted screening campaign that was jointly organised by CRY, the Football Association, the Professional Footballers Association and the Football Foundation. That was around the time that Motherwell footballer Phil O’Donnell died, and his death not only gave us the impetus to highlight the issue of sudden heart failure, but got us into the mindset of seeing that young sportspeople should have a degree of screening.

The issue is how we extend provision to other sports activities. Most deaths do not involve high-profile sportsmen; many involve children whose lives might have been saved had the problem been diagnosed. The siblings and cousins of anyone who has died of cardiac failure have a significant chance of inheriting the problem. It is therefore of the utmost importance that they are screened and monitored for the symptoms of heart problems. The whole family may have the condition, and a second, third or even fourth shocking bereavement
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might occur if individual members are not checked—that has happened. It is shocking that 20 per cent. of people who die from SADS faint or black out during the previous year, while 25 per cent. have witnessed another sudden death in the family. The figures are there for us to see.

I congratulate CRY on making £300,000 available to coroners so that they can refer the case of a young person who dies suddenly of unknown causes to an expert cardiac pathologist, thus speeding up the inquest process and making parents aware of the genetic implications of what has happened to their child. In some ways, that might help families to come to terms with the loss of their loved ones, but it could also save the lives of family members and others who may be at risk. As other hon. Members have said, we must look for good to come from such tragedies.

The hon. Member for North Durham referred to the coroners Bill and he has urged us to see that there are ways forward. I, too, hope that Departments will liaise on this issue, because it is vital that they do so.

I was interested to read about the work done at the Heart hospital on family trees, and that is just one of the preventive measures of which we should make more use. More than half the individuals who have had family trees constructed are found to have a problem. I want awareness to be raised among GPs so that all children with a family history of sudden cardiac death are screened, along with young people who complain of palpitations or feeling faint.

The way forward is to pursue a step programme and gradually widen the scope of screening, and we have an opportunity to do that, because more and more young people are being encouraged to take part in sport in light of the Olympics. We could really add something to the preparations for the Olympic programme by making screening a special feature. That is worthy of consideration. We need to go step by step. If we do, we will perhaps reach CRY’s aim of universal screening. It certainly makes sense to take a step-by-step approach within some sort of a time framework. We need to prevent the needless deaths of young people.

10.24 am

Anne Milton (Guildford) (Con): I, too, pay tribute to the hon. Member for North Durham (Mr. Jones) for securing the debate and for his work with the all-party group. I also pay tribute to the hon. Member for Stockton, South (Ms Taylor), who spoke with considerable passion, although I understand that she has to leave the Chamber for an urgent appointment.

I pay tribute to the work of CRY, which was founded in 1995 to raise awareness of cardiac risk in the young. The fact that people can take a personal tragedy of immense proportions and transform it into a campaign to raise awareness, seek solutions and prevent the same tragedy from happening to others is outstanding. The work, resolve and positive attitude of the families involved is worthy of our highest respect in this place.

CRY also offers families support and counselling, promotes heart screening and donates equipment. It has also launched what I understand is the first centre for sports cardiology in the world. The hon. Member for Mid-Dorset and North Poole (Annette Brooke) mentioned bereavement support in particular, and the
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consequences of not having adequate bereavement support for families can be profound. The incidence of marriage breakdown and of depression and mental illness among parents and siblings is often undiagnosed and left at the bottom of the list and it is often not associated with bereavement. Dealing with such problems can take up considerable NHS resources—not necessarily at the time, or in the first year or two after the loss of a child, but many years later. We often do not count the cost of not offering support in such cases.

Sudden cardiac death, which is dramatic, is thought to be caused by a heart condition that is brought on by exercise. We have heard a few statistics, but it is worth re-emphasising some of them. The hon. Member for North Durham said that sudden cardiac death is far more common than cystic fibrosis, which generally gets slightly more publicity. The figures for sudden cardiac death are, however, quite significant. Dr. Sharma, whom the hon. Member for Stockton, South mentioned, concluded that 395,000 people might have an undiagnosed condition that could trigger sudden cardiac death and that 130,000 of them are under 35. As had been said, that is often indicative of inherited cardiac disease. The Government have a real opportunity to prevent further tragedies by offering family members the appropriate care and screening.

The hon. Gentleman mentioned the association with sport. Like many people, I have a personal story. A good friend of my son’s played football every Sunday, but his family came home devastated one day because this young, fit 24-year-old had suddenly collapsed and died. That is devastating for a family. Why do we feel that a sudden death is so acute because the young person was playing sport? As the hon. Member for Stockton, South said, this is not about people being fat and over 50 and smoking fags; it is about young, fit people and about tragedies that we could avoid.

The hon. Gentleman also mentioned death certification and coroners, and there is no doubt that the issue needs addressing. It is difficult accurately to measure the deaths caused by cardiac abnormalities because when tragedies happen and young people die unexpectedly, the cause of death is often given as accidental or as the result of natural causes. CRY commented:

Not knowing the case of death of an apparently fit and healthy young child or other family member must be agonising.

The UK’s first ever fast-track pathology laboratory, which will help to analyse the causes of unexpected cardiac death in apparently fit and healthy young people, is very welcome. I gather that the unit, the CRY centre for cardiac pathology, is based at the Royal Brompton hospital, and was jointly established with support from Imperial college. The centre will allow coroners to refer cases directly and receive a full report on the cause of death, usually within two weeks. Currently families must endure a wait of anything from three to 18 months. One can only imagine how terrible that must be for them.

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