Westminster Hall Debate: Cardiac Disease (Young People) (10 June 2008)

Speech by Annette Brooke MP on Tue 10th Jun 2008

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.

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:

"It's not like losing your grandfather at 92. Families fall apart."

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

"to reduce mortality from sudden death and improve services for families".

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 school children 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.

The NSF states that

"it is particularly important that children and young people suffering from blackouts are expertly assessed".

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:

"Every child and young person receives age-specific preparation, treatment, support and follow-up...Transition to adult services does not automatically occur at age 16 but takes into account the individual needs and wishes of the young person".

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

"guidance on making the initial diagnosis...improving access to a higher level of expertise"

and

"focused education of key carers".

It says that:

"Those with long-term conditions may be managed in primary care and some will require hospital follow up", and mentions the idea that

"a multidisciplinary is key to...improved service"

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 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.