Hansard

I, too, thank Jim Hume for introducing this very important debate. I recognise his very direct and personal interest in this serious and complex issue.

The sudden and unexpected death of a youngster is absolutely a tragedy. As members have said, such deaths are frequently caused by an inherited cardiac condition. It can be an inherited disorder of the rhythm of the heart, such as long QT syndrome, or an inherited disorder that causes abnormal thickening of the heart muscle in, for example, cardiomyopathy. Although the motion refers specifically to sudden arrhythmia deaths, I will broaden my reply to cover sudden cardiac death of young people in general. What makes these deaths particularly devastating is that the young person usually has no symptoms; there is no indication that they are at risk.

The conditions are difficult to diagnose. At the moment, there is no diagnostic test that can predict with accuracy the outcome for any individual. That is why the national screening committee advises against having a population screening programme for sudden cardiac death. As Richard Simpson outlined, there are also concerns about wrongly labelling someone as being at risk. That could restrict the activities of many children who never go on to develop clinical problems. As has also been said, it could also cause difficulties in adult life with employment, insurance and mortgages. However, the committee is very clear that close relatives who have lost a family member to sudden cardiac death should be offered tests and advice. We have accepted that advice.

There is a section on inherited cardiac conditions in our better heart disease and stroke care action plan. The key to getting a better grasp of these conditions is to bring together cardiologists, clinical geneticists and pathologists, since each have a part to play. We are very fortunate in Scotland to have a mechanism that does just that, and very effectively. I refer to the familial arrhythmia network Scotland, or FANS, which is much easier to say. I put on record our appreciation of the work that FANS is doing through its lead clinician, Dr Anna Maria Choy and her colleagues.

FANS is clear that reducing the risk of sudden cardiac death involves a number of different approaches. First, it means targeting the young people who are at highest risk. That includes those with a close family member who has been diagnosed with an inherited condition that carries a risk of sudden cardiac death. It also includes young people who are taking part in competitive sports. As has been pointed out, the Government is funding the cardiac assessment of young athletes programme at Hampden Park, which is a voluntary programme that is open to young sportspeople aged between 15 and 25. The programme breaks new ground by using an echocardiogram—a two-dimensional image of the heart—to help with the accuracy of the assessment process. Recently the Cabinet Secretary for Health and Wellbeing announced that we are providing further funding to allow the programme to run for another two years. The results will help the national screening committee’s further consideration of the issue.

The next issue on FANS’s list is improving professional and public awareness of inherited cardiac conditions. On the professional front, FANS organises national symposia and it is undertaking a survey to gauge the level of knowledge of the conditions among general practitioners, cardiologists and nursing and allied health professionals across Scotland.

To raise public awareness, the network produces newsletters, leaflets and patient materials. It also has close links to key voluntary sector organisations such as Scottish Heart at Risk Testing and the Cardiomyopathy Association in Scotland. I pay tribute to those voluntary bodies for the valuable work that they do to provide information and support to families. That includes the work of the British Heart Foundation, which last year launched its genetic information service to help relatives deal with the consequences of losing a loved one to an inherited cardiac condition. The service’s helpline assists bereaved families to have an assessment at a specialist clinic.

Jim Hume asked about the training of existing PE teachers in heart conditions. I am happy to look into that, but it may already form part of heartstart, the cardiopulmonary resuscitation programmes that the British Heart Foundation offers in schools. I will pursue the matter and let the member have more information.

Improving referral and care pathways is another of FANS’s objectives for reducing the risk of sudden cardiac death. The FANS website provides information for patients and health care professionals on who should be referred to specialist cardiologists and clinical geneticists and where they are based. Referral of those with a suspected inherited arrhythmia to one of FANS’s regional services has been included in the NHS Quality Improvement Scotland clinical standards for heart disease.

FANS has developed and ratified clinical protocols, which it keeps up to date so that clinicians can deliver the best evidence-based care. It is also developing standards of care for inherited cardiac conditions. That will pave the way for audits, leading to subsequent improvements in the practice and delivery of care.

FANS is also working with the Information Services Division of NHS National Services Scotland to develop a national registry of inherited cardiac conditions. That will make it easier to screen and follow up individuals and families, while avoiding duplication of expensive tests and reducing patient inconvenience.

Through the pathologists who are involved with FANS, the registry will be linked to the UK sudden cardiac death pathology database, which was launched late in 2008. Pathologists will obtain important information from careful post mortem examination of young sudden death victims. The database will ensure that that information is recorded and retained centrally and help those who are assessing the relatives of the young people concerned. It will also provide better data on the frequency of sudden cardiac death.

I should say a word about the availability of public access defibrillators. Our heart disease and stroke action plan highlights their importance and calls on the cardiac managed clinical network in each NHS board to carry out an assessment of the need for them. I am again grateful to the British Heart Foundation for providing information from its mapping exercise that shows the location of public access defibrillators across the UK. That will help the MCNs with their assessment of local provision.

I very much support what the motion says about the need for greater awareness of sudden cardiac death. I hope that it will be clear from what I have said that the Government takes the issue seriously. We have highlighted it in our action plan and are fortunate that FANS is so active in the area. I congratulate all its members and the voluntary sector bodies that are associated with it on the excellent work that they are doing to improve services for all of those who are at risk of sudden cardiac death.

Meeting closed at 17:34.