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When I was at schoolI am sure that many hon. Members will have similar storiesa young boy dived off the top board into the swimming pool, and was
thought to have hit the bottom of the pool. I have no doubt, in retrospect, that it was an instance of the kind that we are discussing. I remember the top diving board being closed; it was a very long time ago, but there is no doubt that until we begin to find out accurately what causes such deaths of young people, we shall not make proper progress.
The hon. Member for Stockton, South, who presented a private Members Bill, and the hon. Member for North Durham raised the issue of what we do in this place, and the work that is done by members of all-party groups. I stress that I, like them, am questioned by constituents about what we do when we are not in the Chamber. Often it is commented that the Chamber is very empty. Todays debate, in fact, represents the huge amount of valuable work that goes on almost behind the scenes, away from the glare of the television cameras. I am not sure whether doctors or MPs are the more difficult group to persuade. It is probably even-steven. It is often difficult to hammer home to hon. Members the evidence about an issue, and the truth of itand is not it curious that it is often difficult to hammer it home to doctors too? We are probably as bad as each other, but that is why the work of CRY has been so invaluable.
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 and advice to close relatives.
In a CRY survey carried out in March 2006, 97 per cent. of PCTs said that they had failed to develop a strategy for implementing any of the NHS guidelines outlined in chapter 8. Some progress has been made, and we must compliment the Department and the Government for that, but it has been very slow and turgid. Another CRY survey, from 2006, which was carried out in partnership with the all-party group, showed that 13 PCTs were taking active steps to review and improve their services. I hope that the Minister will bring us up to date and demonstrate what progress has been made, and how things are moving ahead.
The issue of specialist nurses has been raised. The Royal College of Nursing published a survey this week: 330 specialist nurses had been contacted, and there was still talk of vacancy freezes and redundancy. There are also numerous anecdotal accounts of specialist nurses having to undertake general ward duties, so that although on paper they show up in a head count as specialist nurses in practice, they do not spend time in their specialism. There is no doubt that specialist nurses can make a crucial difference. Working with cardiologists they can have a significant impact. The issue of GPs and diagnosis has been mentioned several times. Continuing education and the raising of awareness among GPs is exactly the sort of work that specialist nurses can do. The picture is not dissimilar with respect to conditions such as epilepsy. Children with epilepsy are left undiagnosed for months or perhaps even years because teachers and GPs are not aware of the implications of something that the parents or child might describe in terms that would not necessarily suggest a more serious problem.
I want to finish by asking the Minister what she is doing, what impact the debate has had on her thinking, and what she will do to encourage PCTs to do more to
implement the national service framework. Time and again charities and organisations welcome, as CRY has done, guidelines and documents; but precious little happens by way of implementation. With every week that goes by without the implementation of the guidelines, another child dies and there is a personal tragedy for the family. The implications of that tragedy will probably go unrecorded, but the family will be left with the enduring suffering that they will have to bear for the rest of their lives.
The Parliamentary Under-Secretary of State for Health (Ann Keen): 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 groups 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 Governments 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 organisations 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 Departments 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 and 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 coroners 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 blackout 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.
Anne Milton: When does the Minister expect those specialist centres to be available to people throughout the country? There is concern in many areas that services are patchy. It is important that they should be rolled out and available to everyone.
Ann Keen: Such services are being developed across the country. They are at different levels of development, of course, as I am sure the hon. Lady appreciates. To sum up today where we are with them is not possible. Every clinical expertise develops at its own pace. Best practice at many centres is being considered. As I mentioned, Manchester has the ability to offer best practice to other centres in progress. Important developments have taken place. The developments promoted by organisations such as CRY are the building blocksor steps, as were mentionedfor a better-quality service for those who need it.
I mentioned that an absence of symptoms can make it difficult to determine who may be at risk from one of the inherited conditions that could result in a sudden cardiac death and what that risk may be. There have always been arguments for and against the national screening of population groups for inherited conditions. My hon. Friend the Member for North Durham mentioned the important possibility of considering what medical assessments could take place in secondary school. That is something that we could and should consider; it is a valuable contribution to the debate.
The UK National Screening Committee has reviewed the evidence for screening for the most widespread inherited cardiac conditionhypertrophic cardiomyopathyon a number of occasions and is doing so again. However, the committee has always concluded that there is not enough evidence to warrant either a blanket screening programme or one targeted specifically at those groups thought to be at high risk, such as young athletes. If a person is found to have an inherited heart condition, it may never affect them. Also, if they are involved in sporting activities, there is little evidence to suggest that removing them from that environment will either reduce or increase their risk of dying suddenly from the condition. A person who tests positive will therefore face significant dilemmas. Should they continue the career that they have mapped out for themselves? Should they start a
family? They can also be penalised financially with higher insurance premiums. Those are some of the hard facts that would be faced by those screened.
Whether or not widespread screening takes place, we must encourage and support any initiative that raises awareness of inherited cardiac conditions and gets people to question whether they may be at risk. That might involve people simply asking themselves straightforward questions about the health of living and deceased relatives and deducing whether there might be a risk. My hon. Friend the Member for Stockton, South mentioned the James Cook university hospital in Middlesbrough and the work taking place there. Without question, I endorse the work of specialist nurses in that area.
Anne Milton: Does the Minister therefore share my concern about the Royal College of Nursing report that I referred to, which deals with the number of specialist nurses facing frozen vacancies and redundancy?
Ann Keen: The hon. Lady raises the issue constantly as though we were not considering it. Of course, everybody is concerned about the reports that professional bodies, such as the Royal College of Nursing, bring to the table, but I think that she would agree that, at this time, all the specialist nurses in the country are being used as effectively as they can. That trend is only growing, and I am sure that she would want to represent it positively.
Parents of physically active children might want them to undergo a clinical test, having weighed up carefully the pros and cons associated with such an action. If the family decide that they want to have a personal test carried out, CRY can offer that service, for a small fee, along with all the necessary information and support.
This country has about 6 million footballers, ranging from those who have a kick aboutone with whom I live was having one this morningat the weekend to professionals. I was delighted to be part of the recent launch of an initiative promoted by my right hon. Friend the Secretary of State for Culture, Media and Sport, and hon. Members referred to the reception held recently in Downing street. It is imperative that we work in partnership with a number of organisations, including CRY and national football organisations, to promote awareness of such conditions. The initiative also raises awareness of the excellent services that CRY offers, giving people the choice of personal testing if they wish to exercise that choice.
In conclusion, we heard the statistics for young people and their families: we are told that eight young people die every week, which is such a tragedy. The heartache of all concerned is well-recognised by hon. Members here and those of the all-party group on cardiac risk in the young. We have a long way to go in the development of services, but I believe that, in the spirit of the all-party group, we have made progress, as has been mentioned by most hon. Members today. For those at risk of an inherited cardiac condition, we need to do, and have done, so much. We must thank stakeholders more widely and recognise the way in which everyone has worked together. My hon. Friend the Member for North Durham mentioned the Olympics being used to raise awareness, which is a very positive initiative that we should consider further.
Annette Brooke: A tremendous push and a large amount of resources seem to be coming from the charitable sector. It would be nice if the Minister gave us further assurances that the Government will play an equal role in pushing this agenda.
Ann Keen: I hope that I have made it clear that we are working in partnership. My hon. Friend the Member for Stockton, South mentioned the important and positive work carried out by Roger Boyle and the Department in partnership with stakeholders. I understand why the hon. Lady feels the need to push me on this, but I can assure her that hon. Members need not do so: we are working very positively with CRY, and will continue to do so with all stakeholders. No one can have been unaffected by what they have heard here today. However, most importantly, we must give a big thank you to the families for the positive way in which they are always willing to work with us. That must be the end statement of this debate. I pay great tribute to those very brave people who are assisting future generations in this country.
Ann Winterton (Congleton) (Con): I begin by expressing my condolences to the families and friends of the three young soldiers of the 2nd Battalion the Parachute Regiment who were killed by a suicide bomber while on foot patrol approximately a mile from their base in Helmand province. I am sure that everyone present will join me in sending our deepest sympathy to their families and friends, who are very much in our thoughts and prayers.
I am delighted to have secured this important debate on a subject of the utmost importance. I believe that it deserves more than an hour and a half, but judging by the number of people present, we might have difficulty filling an hour and a half. I intend to discuss the directional objectives, structures and strategy of our armed forces, as well as the benefits to our nation and the financial cost involved. All those issues will be considered in relation to the type of equipment that the armed forces use at present or will use.
It is good timing and appropriate to the debate that the United States Secretary of Defence, Robert M. Gates, gave a speech to the Heritage Foundation in Colorado Springs, on 13 May, outlining the theme that I have been pursuing for the past four years. His speech was perhaps best summed up by Reuters, which paraphrased him as saying:
The US military should focus more on winning in Iraq and preparing to fight other insurgencies and less on possible big wars with other countries.
I would stress that the perennial procurement cyclegoing back many decadesof adding layer upon layer of cost and complexity on to fewer and fewer platforms that take longer and longer to build must come to an end.
I have noticed too much of a tendency towards what might be called Next-War-itisthe propensity of much of the defence establishment to be in favour of what might be needed in a future conflict.
We are determined to do more to support our people here and on the front line. To do that, we need to better prioritise our spending plans. The examination of the equipment programme will focus on two issues above all: bearing down on cost increases to the equipment programmes; and rebalancing the equipment programme to better support the front line.
The problem is that we do not know in which direction the military are looking. The only clue that we have had to date came from the Army in this months Soldier magazine, in which the Chief of the General Staff, General Sir Richard Dannatt, is quoted as saying that Piranha V heralded the
start of a new era
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