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Sudden Adult Death Syndrome

Volume 812: debated on Wednesday 9 June 2021


Asked by

To ask Her Majesty’s Government what assessment they make of avoidable deaths from Sudden Adult Death Syndrome in the United Kingdom each year; and what steps they are taking to introduce screening to reduce such deaths, in particular for those involved in sporting activities.

My Lords, in 2019, sudden adult death syndrome was a factor in 1,511 deaths. The UK National Screening Committee found insufficient evidence to support a national screening programme. However, where a family member has cardiac disease, relatives at risk are offered screening for potential causes of sudden adult death syndrome. In addition, the NHS is focusing on fast and effective action using automated external defibrillation to save the life of anyone suffering from cardiac arrest.

I thank the Minister for her Answer. As to the absence of evidence, there is a good deal of evidence from abroad that deaths could be reduced by screening. That has been building as a case for many years and parliamentarians have acknowledged it. There is an APPG on cardiac arrest; there have been debates, including an Adjournment debate; Andy Burnham has moved for this; and there is a general feeling that something must happen here to acknowledge the evidence that exists and reduce young people’s deaths. Will the Minister set out a timetable for when this can move forward to further action, please?

My Lords, I am aware of the evidence in the UK and abroad, and the noble Baroness may be referring to a study from Italy. Similar results have not been found in other countries, and the UK’s assessment of the evidence is as I set out in my former Answer. More work is being done, in particular to improve access to screening for those family members where someone has suffered from sudden adult death syndrome or is otherwise shown to be at risk.

My Lords, does the Minister concur with the Sudden Arrhythmia Death Syndromes Foundation that for the 50% of SADS deaths that show no prior warning signs, rapid access to automatic external defibrillators—AEDs—is the only way to prevent many tragedies occurring? If so, do Her Majesty’s Government have any plans for expanding the number of AEDs available throughout the country, especially at sporting venues?

My Lords, the Government do agree with that assessment and are putting in place, with partner organisations, a programme of work not just to expand the number available but to improve co-ordination, so that emergency services know where those locations are and can direct members of the public so that they can use that equipment where necessary.

My Lords, as president of the small sudden deaths in epilepsy charity SUDEP Action, based in my former constituency, I know that sudden deaths from epilepsy have also risen during the pandemic. Part of the issue is how these deaths are reported and recorded. It is the second most common cause of preventable death and there is a lack of protocols for use by healthcare professionals, particularly to help young people manage this condition. Will the Minister ensure that this issue is looked at and that we increase our attention on the tragedy of sudden death caused by epilepsy in young people?

My Lords, the Government are committed to securing the best possible treatment and care for people with epilepsy, and to raising awareness of sudden deaths in epilepsy. Guidance has been made available from the National Institute for Health and Care Excellence that sets out recommendations for clinicians to this end, including referral to bereavement services for the families of those affected. NHSEI has also developed an epilepsy “right care” toolkit with leading charities in this area.

I declare that I am a patron of CRY and that my son is a cardiologist. Given that artificial intelligence automated screening could decrease the burden on screening, but must not dissuade participation in sport, and that sudden cardiac death can occur at any time and anywhere, how will the Government focus on the delivery and maintenance of defibrillators in sporting and all public venues, and ensure that CPR is taught to all athletes and coaches, all students in education, and all those working in public places? Will this be considered to be mandated?

I reassure the noble Baroness that awareness of CPR is now part of the national curriculum in secondary schools for teenagers. Other work is also being done with partner organisations such as the British Heart Foundation and GoodSAM to improve the co-ordination of first responder activities and defibrillation skills for adults and passers-by who may need to respond in that kind of situation.

My Lords, I found the websites of SADS UK, the British Heart Foundation and CRY useful in the information, advice and practical support they offer people about the various conditions which cause sudden adult death. Are these important organisations being supported by the NHS and the Government, and in what way? Secondly, can the Minister inform the House whether any research is being carried out into age, gender, race or other characteristics that will shed light on which groups are most vulnerable and carry the genetic disposition to SADS?

Perhaps I may reassure the noble Baroness that the NHS engages with a number of charities involved in SAD, including the sudden arrhythmic death syndrome charity SADS UK. That organisation in particular is helping scientists and clinicians understand and combat a rare condition called “short QT syndrome”, which is associated with an increased risk of sudden cardiac death. On other factors that may put people at an increased risk, gender is one that seems to increase the risk for men rather than women. However, I am sure that there is further work and research being done in this area.

My Lords, will the Government undertake that when all elite-level athletes go through routine medical checks, they are actually checked for this condition? That would not only improve the chances of survival for anybody who has this but would widen general public awareness.

My Lords, that is not the current position of the Government. The effectiveness of pre-participation screening for athletes is not proven by clear-cut evidence; there is mixed evidence out there. Its potential to reduce deaths is likely to be low because of the poor detection rate. There is also the counterbalancing potential for psychological harm due to the potentially high number of false positives, which could be particularly debilitating for professional athletes and those whose lives are centred around sport and participation.

Every time this syndrome strikes, it leaves a terrible situation for all those connected to the victims, including sometimes feelings of guilt that somehow in individual cases it could have been avoided. Does my noble friend think that sufficient research is being carried out, especially in the field of genetic causation, and what more could the Government do to support and enhance such work and research?

My Lords, there is an opportunity now, with the implementation of the genomic laboratory hubs across England, to explore the systematic introduction of post-mortem genetic testing for SAD, which could vastly help us in this area. A programme was launched last year between NHSEI and the British Heart Foundation to do that, and seven sites are developing pathways to improve testing in this area.

My Lords, in Northern Ireland, following the unexpected deaths of several young people, an independent screening clinic was established at Ulster University and launched by CRY. What discussions and inter-exchange of ideas have taken place with CRY, and what efforts have been made through Whitehall and the devolved Administrations to have dedicated specialist clinics for this purpose? Maybe the Minister could outline the level of discussions.

My Lords, as I have said, the NHS engages with a number of charities involved in SAD. It also looks very carefully at the issue of screening, and the last time that it was reviewed by the UK National Screening Committee was in 2019.

My Lords, as the Minister noted, the statutory guidance for PHSE education now includes teaching secondary school students life-saving skills, including CPR. But can she say what support is provided to schools to ensure that it is taught accurately, especially when there is no school nurse or staff member qualified to do so? As it is guidance only, are the Government monitoring the number of schools that are actually teaching this content within PHSE?

My Lords, I know that a range of resources is available to support schools in their teaching of PHSE, but I am happy to take away the detail of the noble Baroness’s question and write to her in response.

My Lords, the time allowed for this Question has elapsed. We now move to the third Question and I call the noble Lord, Lord Beith.