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Cardiac Disease (Young People)

I congratulate my hon. Friend the Member for North Durham (Mr. Jones) on his success in the ballot, and I am grateful to him for continuing to raise awareness of this important subject, particularly through his work as chairman of the all-party group on cardiac risk in the young. I pay tribute to the group's membership as a whole. Every young death is a tragedy, but when that death occurs very unexpectedly in an apparently fit and healthy young person, in the prime of their life and with so much to look forward to, the impact is much greater. Hon. Members have expressed that passionately today. In this day and age, we have come to associate death with increasing old age. When young people are struck down before their potential is fulfilled, without the time for their families and friends to adjust and say goodbye, and when the fear that another family member may have inherited the same potentially fatal condition is added, the stress on the grieving family is almost impossible to imagine. Most sudden deaths in young people occur, as we have heard, as a result of an inherited cardiac condition. It is often difficult to detect the risk beforehand, because the person will probably not show any symptoms. That makes it very difficult to find proactively everyone who would benefit from targeted support and treatment. As an absolute minimum, when a tragic sudden death occurs, we must do everything that we can to determine the risk to other family members and ensure that they receive the best advice, support and treatment. Chapter 8 of the coronary heart disease national service framework, which was launched in 2005 and covers arrhythmias and sudden cardiac death, is the Government's statement of intent for the development of those services. It states that, when sudden cardiac death occurs, NHS services should have systems in place to identify family members at risk and provide personally tailored, sensitive and expert support, diagnosis, treatment, information and advice to close relatives. I will in a moment cover some of the key progress that has been made since chapter 8 was launched, but I want first to pay tribute to those whose hard work resulted in the launch of that important document. It is widely recognised that chapter 8 might not have come about without the considerable efforts of Alison Cox of Cardiac Risk in the Young, who I am proud to say was awarded a well-deserved MBE last year. My hon. Friend the Member for Stockton, South (Ms Taylor), who has apologised for having to leave to attend a Committee and who spoke passionately today, and the hon. Member for Mid-Dorset and North Poole (Annette Brooke) are also very able people who have contributed to chapter 8. We are keen to ensure that ownership of the policy is retained by all who had a hand in its conception and development and that they are encouraged to work together on its implementation. We are delighted that Alison Cox and other members of CRY, along with other patient organisations such as SADS UK, the Cardiomyopathy Association and the Arrhythmia Alliance, continue to be involved in the implementation of chapter 8 nationally and locally. On the day that I was appointed to this post, I was fortunate enough to be invited to speak at a CRY parliamentary reception. I have endeavoured to follow the organisation's progress closely ever since and to lend it whatever support I can. It is a privilege to be the Minister responsible for cardiac services, but with that privilege comes great responsibility. I hope that I can explain some of that work in my reply. As well as working with the Department of Health and other national organisations to develop high-quality cardiac services for young people and their families, CRY provides significant funding to help join up and fast-track the complex range of services necessary after a sudden cardiac death to determine the risk to other family members, which is very important. In addition, CRY provides funding for research into heart conditions and has recently established, in collaboration with the Royal Brompton hospital, the CRY centre for cardiac pathology. CRY and all those involved in the development and ongoing implementation of chapter 8 are to be congratulated. It is important to recognise how complex this clinical issue is. Families who have lost a loved young person and may themselves be at risk from a familial heart condition need access to specialist services provided by a range of different professions. If families are to be assessed properly and get the right information, support, care and treatment, the different professions need to work together. Getting the various service elements to complement each other takes time, and some might say that the development of such services has been slow, but it is important to recognise that many significant developments have taken place since the launch of chapter 8. Under the auspices of the Royal College of Pathologists, pathologists and cardiologists have established a UK network of specialist cardiac pathologists to ensure that coroners can call on the right expertise in suspected cases of sudden cardiac death. My hon. Friend the Member for North Durham praised Dr. Mary Sheppard, and I add the Department's praise for her work. The Department of Health recently funded the establishment of a database to record information on cases referred to those specialist cardiac pathologists; £35,000 was made available. The database should provide invaluable information on where and why such deaths are occurring, what specialist pathology is sought and provide cardiac pathologists with a local audit tool. My hon. Friend asked whether I would meet the relatives; of course I will, to gain as much information and knowledge as we can. At the other end of the spectrum, the Department of Health issued a document in March 2007, setting out a blueprint for the development of specialist inherited cardiac conditions services in the NHS. We are working with service commissioners and providers to ensure that all who require a risk assessment for such conditions get a comprehensive assessment from a service with all the necessary expertise and knowledge, but it is what happens between the coroner's involvement and assessment and treatment at a specialist centre that is crucial and needs to be better co-ordinated. Organisations such as CRY have made an enormous difference through patient awareness and bereavement support and by linking directly to specialist NHS and wider services. However, the Department of Health, with other stakeholders, is currently working with the British Heart Foundation to determine how the pathway for those at risk can be better co-ordinated. The hon. Member for Mid-Dorset and North Poole mentioned specialist black-out clinics, which are being developed across the country. Manchester in particular has a specialist unit, from which many other units are learning and gaining expertise.