Sudden Adult Death Syndrome: 25th March 2013

Steve Rotheram
I thank the hon. and learned Gentleman for his contribution. Until I did some research, I did not realise what a huge problem SADS actually is. I drew out some statistics, which I will share with the Chamber: some 250 people die every single day in the UK as a consequence of sudden arrhythmic death syndrome or one of its counterparts, and some 270 schoolchildren die in British schools from SADS each year. The disease kills more people in Britain every year than lung cancer, breast cancer and AIDS combined; it is an absolutely huge issue, and it is fantastic that the OK Foundation has brought it to our attention in Parliament, because Oliver’s story is like that of any of the 60,000 SADS victims across the country each and every year.

The debate is crucial to raise awareness of the condition. We as parliamentarians have to date not done enough to address people’s concerns. I hope the fact that my right hon. Friend the shadow Health Secretary is in his place and will be responding for the Opposition demonstrates just how seriously we are taking the issue. I would like to place on record my thanks to the Leader of the Opposition for meeting campaigners in recent months, which is something that the Health Minister has refused to do so far.

I will briefly outline what sudden arrhythmic death syndrome is—or SADS, as it is known.

The Parliamentary Under-Secretary of State for Health (Anna Soubry)
Will the hon. Gentleman explain what he just said in more detail? I am very concerned if he is saying that any Minister has refused to meet campaigners. If that is the case, I assure him that it should not be. I certainly do not have any problems with meeting anybody. I know that some people turned up at my constituency ​office unannounced on a Sunday morning, which was not very helpful—obviously, I was not there—but I am quite happy to meet any campaign group on the issue.

Andrew Percy
Members of Parliament are never backward in coming forward to praise their local newspapers, not least in the hope that it guarantees them a friendly quote next week, but the hon. Gentleman makes an important point. Newspapers can be part of our going out to challenge—I do not want to say “shame”—businesses. I am a Conservative and I love businesses, but businesses make profits and do so on the back of their workers, to whom they have responsibility. [Interruption.] Well, I think that I am a Conservative. Of course, I am; or just the Brigg and Goole party these days, perhaps. [Interruption.] Well, I am certainly not a Liberal Democrat—no offence to my hon. Friend the Member for Southport (John Pugh)—because my views on Europe count me out.

Newspapers have a responsibility to go to businesses and challenge them, particularly big businesses. I understand that defibrillators would be expensive for smaller ones and those employing only one or two people, but we should ask big businesses, “What are you doing for the welfare of your workers? Where are your defibrillators?” Newspapers such as the Liverpool Echo and the Scunthorpe Telegraph have an important role to play in that.

Anna Soubry
I am grateful to my hon. Friend, and I congratulate him on his excellent speech, which follows another excellent one. Does he agree that there is a good argument that we can build an Olympic legacy based on the great volunteers who took part in the games by considering whether we can use some of the skills that ​they helped to bring to the games, and take those skills into the issues of training people and campaigning for defibrillators, which he has identified?

John Mann (Bassetlaw) (Lab)
It is a pleasure to take part in this debate and I congratulate my hon. Friend the Member for Liverpool, Walton (Steve Rotheram) on the fine way that he introduced it. I pay tribute to the campaigners who have given Parliament an appropriate kick in the pants to ensure that this issue is debated with ​proper time. This is a great opportunity for us to look at what can be done and the best way to do it. I will be giving the Minister some proposals on how this can be taken forward that will not cost her any money—there are ways that Governments can spend money, but some suggestions are cost-neutral.

By a remarkable coincidence, in Bassetlaw we are about to launch a campaign. When we agreed to launch it, I did not know that this debate would take place. After we had set our campaign dates, I got some e-mails and twitters telling me about it—[Interruption.] Tweets, apparently. Anyway, I got them, read them and responded. There was a good bit of pressure, but we had already decided, because we have a campaign group that has been battling. People power has brought this debate here, and we had our own people power in our ambulance campaign in the east midlands, which was resolved today—the Minister will want to know this, because I doubt whether she had anyone in the meeting this morning, but I did.

In our area, we put forward the idea that, rather than have all our ambulance stations closed, going down to none, we should have them kept open and have three. We have won. All three are being kept open, as a result of people power. The number of fully crewed ambulances with qualified staff will remain as is, rather than being cut. I asked for six guarantees—I put it in writing—and got the formal answers on the record this morning. We won that campaign.

I offered the ambulance service a bit of a deal when I met it. Our group, the “Save Our Services” campaign, which just so happens to include Councillor Adele Mumby and Mr Gavin Briers, community first responders, and various others, has campaigned with me and the local council on this matter. I said, “Look, I’ve seen some figures that say Bassetlaw has a less than 2% survival rate. However, in Lincolnshire, it is apparently 11%. Hang on a minute. I don’t know who’s not been informing me about this, and I’ve not seen these figures before, but if our survival rate is under 2%, and Lincolnshire’s is 11%, something’s wrong.” When I looked into it, the community first responders were clear about what is needed: they said we need defibrillators everywhere in our community and we need training.

We have therefore agreed the Bassetlaw defibrillator campaign, which we are launching on 11 April. It will be an unusual campaign, compared with some. I have heard a lot of medical jargon, but we will not be using any of that, because I cannot follow it, and I am the MP. Many of my constituents will have more medical knowledge than me, but some will not be able to follow that jargon, so we will keep the campaign really simple. It is going to be like this. Every school will have to have a defibrillator; those that do not will get a visit from me to hold their governors to account. I do not care who funds this: the council, the county council or the school governors. The Lions are also raising money. What I do care about, though, is that the defibrillator is registered with the ambulance service, which can then do the training to make sure the defibrillator is properly used.

I have been to have a look at a defibrillator, and I was photographed trying one out. Like my hon. Friend the Member for Liverpool, Walton, I know how simple they are; us simple guys, we can get it. It is easy to use one, and I can do it. However, I want to make sure the systems are good, and I want people to think them ​through. That is important for the kids. When I was 11, a lad in my class at school died suddenly, so I am very aware of the problem. However, I also want to make sure the community can use these defibrillators, so we are not stopping just at schools, although if a school does not want to have a defibrillator, I will name and shame them. I am sure they all want one, and some have them already, but they should all want to participate fully.

To help, the Minister could have a word with the Secretary of State for Education, as others have said. I could suggest bits of the national curriculum that could be dropped. We could lose a king or queen who is long dead, and put in a bit about defibrillators. If the Minister or the Education Secretary wants to come up with other bits of the national curriculum we could lose, I do not mind, but they should get these issues on the curriculum, so that everyone in school learns about it. In areas such as mine, the children will then go back home and teach the old folk such as me—the grandparents and all the rest of them—the skills they have; they will tell them what to do. That knowledge will spread through the community like wildfire; that is what I want.

However, there is more than that. My neighbour, the hon. Member for Brigg and Goole (Andrew Percy), is well trained, and I am glad that he is, because I do not live too far from him. However, nursing homes are provided by the health service, county councils and others, and they are licensed by the CSQ—

Anna Soubry
The Care Quality Commission.

The Parliamentary Under-Secretary of State for Health (Anna Soubry)
It is a pleasure to serve under your chairmanship, Mr Streeter.

I thank everyone who has spoken in this excellent debate. A debate normally consists of one side of an argument versus the other side, but today we have had an outbreak of agreement and there has been no one side or the other. The debate is also momentous because ​I can say with my hand on my heart that I found myself in agreement with not only my hon. Friend the Member for Brigg and Goole (Andrew Percy) but, most concerning, the hon. Member for Bassetlaw (John Mann), with whom I share history, because I was born and brought up in his constituency. I would be absolutely delighted to take up the hon. Gentleman’s invitation to visit, because it means a great deal to me. To be serious, however, because I was being flippant, this has been a good debate. I pay tribute to all those who signed the online petition and particularly to the hon. Member for Liverpool, Walton (Steve Rotheram) who opened the debate so well. He spoke with great passion and feeling and with considerable knowledge. We have had a good debate because of the outbreak of agreement and some well formed speeches, based on real argument, facts and figures, as well as on constituents’ experience.

Where are we? We all agree that defibrillators are good things; many hon. Members have spoken about the role that they can play and how we need considerably more of them. We all agree that we need more people trained in their use and in CPR and all manner of emergency measures for someone in a life-threatening situation. I congratulate the hon. Member for Bolton West (Julie Hilling) on her speech; she explained how training our children could bring us real benefits in the number of people trained, which would mean more lives being saved. I pay tribute to my hon. Friend the Member for Brigg and Goole, who spoke about his experiences as a community first responder and about how volunteers from the community, not only young people at school, could be trained in such skills. He gave some good examples of how effectively such a programme could be rolled out. Other hon. Members talked about the value of screening and, for example, I pay tribute to the right hon. Member for Knowsley (Mr Howarth) for his comments on the need for screening.

Unfortunately, I am going to be somewhat of a fly in this otherwise rather pleasant ointment, because I do not agree with everything said about legislation. My view is that we do not need legislation. We already have all manner of programmes locally. I am not denying that our system is patchy and that some parts of the country are clearly doing a far better job than others, but it is understandable why the previous Government decided to put defibrillators and training down to the local ambulance trusts: they know their communities best and they are the people to ensure delivery, to the best of their abilities, to meet the needs of their communities.

I usually flinch from legislation, because it can take a long time to go through this place and because when we start to be prescriptive, we can run into all sorts of dangers. We have accepted that different communities have different needs, and I pay tribute to the hon. Member for Bassetlaw for his compelling case for defibrillator training to be rolled out through our communities, depending on the nature of the community. For example, his constituency has a large number of parish councils—mine does not have as many, but it matters not—and he discussed putting pressure on and working and campaigning with the parish councils to start installing defibrillators. The parish councils can look at their own communities and at what would suit the needs of those communities. He then made a good ​point about work forces and the possibility of defibrillators in every place with more than a certain number of employees, and that is where the debate begins, because the difficulty with legislation lies in whether we look at a workplace with 50, 100 or 1,000 employees. The hon. Gentleman described how he could work with the trade unions in his patch and in effect, as a result, roll out a campaign of asking the work forces whether they think something is a good idea in a particular workplace or not in another. If we begin to prescribe, however, we will not deliver the sort of service that we want.

Andy Burnham
I realise the situation is slightly unusual: the Minister is defending the policy of the previous Government and I am asking her to reconsider and to go further. She said that ambulance services are best placed because they understand their communities. I partly agree, but the problem is that ambulance services do not have the power to insist on defibrillators going where they are most needed. The ambulance services are not the planning authority or the owners of the big buildings; they can only use persuasion and cannot ensure that defibrillators go where they really need to go, where lives can be saved. That is why legislation is necessary. If she is worried about overly burdensome legislation, it could start with a simple requirement to have a defibrillator publicly available in towns of, for example, 30,000 or more; it could be a modest requirement to get the ball rolling, as other countries have done.

Anna Soubry
I am grateful for the intervention, but it rather makes my point. Once we stipulate, for the sake of argument towns of 30,000, we can imagine that in the towns without that level of population people will think, “Well, we’re all right, so we won’t do much work on it.” That is the problem with a more prescriptive approach.

While we are discussing ambulance services, and referring again to the speech of the hon. Member for Bassetlaw, I wish to set the record straight on the East Midlands ambulance service. EMAS has been struggling for some time, with a number of difficulties that the hon. Gentleman and I are familiar with. As mentioned by my hon. and learned Friend the Member for Harborough (Sir Edward Garnier), my hon. Friend the Member for Loughborough (Nicky Morgan) has been involved in a campaign following the death of Joe Humphries, who did not live in her constituency but went to school there. As a result of her work, for which I am grateful, Leicestershire has 109 static defibrillators in public areas, 14 of which were installed in partnership with the Leicestershire police, and there are 24 Heartstart schools in the county.

The hon. Member for Bolton West also talked about the Heartstart scheme and its success in her area, although I can see that that may not be the case universally throughout the country. What is happening because of the debate, however, is that not only are we holding it and everything is being recorded in Hansard, but I will certainly go away and not hesitate to have that conversation with the relevant Minister in the Department for Education. An extremely forceful message has come out of this debate about the need for such training to be included in the national curriculum. I could not possibly give my own views on that, but the argument has been advanced extremely strongly and it has much merit and power.
 
Steve Rotheram
I was not aware that the Minister is an anti-legislationist parliamentarian.​

My right hon. Friend the Member for Leigh (Andy Burnham), off the top of his head, suggested a population of 30,000 as a starting point. It does not matter whether the threshold is 30,000, 25,000 or 50,000; basically, there has to be a starting point. Even if the threshold is 30,000, once automatic external defibrillators are in place, they are there for life, and we can then start to concentrate on places with fewer than 30,000 people. We could do that for large factories or organisations before we go to the small ones. There is no magic wand and provision will not happen overnight, but we need to start somewhere.

Anna Soubry
The hon. Gentleman’s point is good and is well made.
 
Mr George Howarth
In some respects I share the Minister’s scepticism that legislation is always the answer; it can, on occasions, be a blunt instrument. The problem, however, is that whenever we look at what the alternative is, it is not straightforward. My hon. Friend the Member for Bassetlaw (John Mann) talked about parish councils, but not everywhere is covered by parish councils.

Anna Soubry
That, again, is a good point. Clearly, one size does not fit all. Every area has different needs.

Andrew Percy
The problem with looking to the ambulance services is that they do not have the money to provide defibrillators to each of their communities. I would also question whether they necessarily know their communities all that intimately, being organisers, as they are, on large, regional scales.

We have discussed areas of responsibility outside those of the Minister’s Department, but will she undertake to look at the situation of nursing homes, particularly in Texas? Will her officials contact the health department in Texas to see what impact there has been as a result of requiring defibrillators in nursing homes? Then we can come to an evidence-based decision on the matter.

Anna Soubry
My hon. Friend’s point is, again, good and well made. I am glad that we worked out which part of the United States it was that something good could be said about in this respect. I am more than happy to take his point away, as one of the many ideas that hon. Members have suggested in this debate, and see whether we can consider in any way, be it making provision mandatory or issuing guidance to nursing homes and other institutions—[Interruption.] I think my hon. Friend the Member for Brigg and Goole said that he was going to send it to me. I will be interested in anything that ever comes across my desk. I will give it due consideration and pass it on, if necessary, to those who have responsibility for nursing homes in the Department of Health. As I said, it is a good idea.

One could argue that only a limited number of hon. Members have participated in today’s debate. We should stop here for a moment, because all the Members who have spoken have come from the standpoint of having experienced someone—normally a child—dying suddenly from a heart attack. That touches people in a raw way, because it involves a child. Mercifully, out of all the horrors and badness invariably comes something good, which is a point raised by the right hon. Member for Belfast North (Mr Dodds). Hon. Members have raised many examples of the good that has come out of the terrible and tragic loss of a young life.

Julie Hilling
Does the Minister agree that we should take some of the luck out of the issue? Fabrice, Malcolm and Mrs Hobbs were lucky, but Oliver was not. We need to take the luck out of the issue, to ensure that people who suffer a sudden cardiac arrest have a good chance of survival. We can do that only if we have some sort of legislation that says, “You must have defibs and you must do training.”

Anna Soubry
I have given my reasons for why I do not believe legislation, at the present time, is the answer. I agree with the hon. Lady that a lot of the matter depends on luck. Certain areas seem to offer a better service than others because of some unfortunate tragedy that has befallen them. With the Oliver King Foundation and many other charities that we have heard about today, people have come together and raised money to install defibrillators or to ensure that school children receive the right sort of training.

We heard examples of the work of mayors. The hon. Member for Barrow and Furness (John Woodcock) talked about the work of the mayor in his constituency, and the hon. Member for West Lancashire (Rosie Cooper) spoke about the work that had been done in her constituency by the mayor. She also mentioned the death of a young man and the work that his family has done as a result to ensure that other youngsters did not suffer a similar fate, and that the things that should be in place were there.
 
Andrew Percy
Again on legislation, I agree with the Minister’s point that we want a mixed approach to the matter, but if we expect communities to take charge of the matter themselves, we must understand that some communities do not have the capacity to do so. They might not be able to raise money quite as easily as more middle-class and better-off areas can. Some communities might be slightly better organised because they have a parish council speaking for them. We must bear in mind that not every community will have the resources or the individuals who feel confident enough to raise money for such provision.
 
Anna Soubry
My hon. Friend’s point is another well made point.

I will return to where this debate started—the subject of sudden adult death syndrome. Starting with screening, often when there has been a case of a sudden cardiac arrest, many people say, “Screening will have a big impact in the future.” As the right hon. Member for Leigh will know, the UK National Screening Committee, an independent expert body that advises Ministers about all aspects of screening, assesses the evidence for screening against a set of internationally recognised criteria. No doubt that is why the right hon. Gentleman listened to and followed its advice, which is that, while screening has a potential to save lives, it is not a foolproof process. The footballer Fabrice Muamba suffered cardiac arrest, and many of us will remember what happened to him at the game. We have heard many people describe the amazing medical assistance that he was given—I cannot remember for how long he was unconscious, but it was an incredibly long time—and that young man has made a remarkable recovery. However, I am told that he had received several screening tests throughout his career.​

In 2008, the UK NSC reviewed the evidence for screening for the most common cause of sudden death in those under the age of 30, hypertrophic cardiomyopathy, including looking at athletes and young people who participated in sport. A number of the cases that we have heard today involved, invariably, young men or boys who died while playing sport, notably football. The UK NSC concluded that the evidence did not support the introduction of screening. Sudden cardiac death is a complex condition and is difficult to detect through screening; there is no single test that can detect all the conditions, nor is it possible to say which abnormalities will lead to sudden cardiac death. However, in line with its three-yearly review policy, the UK NSC is again reviewing the evidence. This time the review will go further than only looking at the evidence for screening for HCM and will cover screening for the major causes of sudden cardiac death in young people between the ages of 12 and 39. The review will take into account the most up-to-date international evidence, including evidence from Italy, where screening is currently offered to athletes between the ages of 12 and 35.

There will be an opportunity to participate in the review process later this year, when a copy of the latest review will be open for public consultation on the UK NSC’s website. No doubt, a number of the organisations and charities that we have heard about today will take part in that consultation. I am told that although screening is not routinely available in England, work to prevent premature death from cardiovascular disease is a priority, as it should be.

On 5 March, the cardiovascular disease outcomes strategy—not exactly words that trip off the tongue—was published. It sets out a range of actions to reduce premature mortality for those with, or at risk of, cardiovascular disease. The NHS Commissioning Board will work with the Resuscitation Council, the British Heart Foundation and others to promote the site mapping and registration of defibrillators, and to look at ways of increasing the numbers trained in using them. I pay tribute to the foundation, which a number of hon. Members have mentioned, and rightly so, as we are all grateful for its work in, for example, placing defibrillators in Liverpool primary schools. That is, no doubt, because of the outstanding work of the Oliver King Foundation.

Ambulance trusts have had responsibility for the provision of defibrillators since 2005, and in my view they are best placed to know what is needed in their local area. However, it is important to recognise that defibrillators help only in a minority of cases. The majority of out-of-hospital heart attacks—up to 80%—happen in the home. Bystander CPR doubles survival rates, but it is only attempted in 20% to 30% of cases. It is clear that although defibrillators play an important part, we have to bear in mind, as I said, that 80% of heart attacks, if they do not happen in hospital, happen at home, and I absolutely concede that there is a real need for an increase in the amount of people trained in CPR, because we know that that also plays a hugely important part in ensuring that people who have a heart attack survive it.

When there is a sudden cardiac death, we need to take action to ensure that potentially affected family members are identified and offered counselling and testing to see ​if they are also at risk. We know that that does not always happen. There are continuing discussions with the chief coroner for England to determine how coroners’ services might help in the identification of potentially affected family members, so that more lives can be saved. The national clinical director for heart disease, Professor Gray, will work with all relevant stakeholders to develop and spread good practice around sudden cardiac death.

In conclusion, I will wait to see the latest recommendation from the UK NSC, following its latest review of evidence. The national clinical director for heart disease will continue to promote good practice and awareness around sudden cardiac death. However, as I have said before—forgive me for repeating myself—I will ensure that I speak to the relevant Minister at the Department for Education about all the arguments that have been advanced today for training in CPR and life-saving techniques to be part of the national curriculum. It is my understanding that that particular part of it is under review, and I will impress on him or her how strongly Members have spoken today.

Again, I thank everybody, especially those who signed the petition, for bringing the debate into this place and, effectively, for shining a spotlight on the matter. I hope that hon. Members will take the issue to their local press, as I am sure they will, and that the national press might also look at it. It is absolutely right that the more we ventilate it, the better the situation will be.
 
Mr Gary Streeter (in the Chair)
In debates of this kind, the mover of the motion may have a few moments to summarise or respond at the end.

Steve Rotheram
Thank you, Mr Streeter. First, I thank all right hon. and hon. Members for taking part in the debate on behalf of the campaigners, and obviously I thank the campaigners, who have made a long journey in certain cases to come to Parliament today to hear what we have been saying and what the Minister has been saying. Can I just pick the Minister up on one point? It is very important to some people here; we have a doctor and other medical staff here. She continually made reference to heart attacks; I think that what she meant was cardiac arrests, which are a very different thing.
 
Anna Soubry
Sorry.