Written evidence from the British Heart Foundation

 

Executive Summary

 

 

About the British Heart Foundation

 

The British Heart Foundation (BHF) is the largest independent funder of medical research into heart and circulatory diseases in the UK, and our research has helped halve the number of people dying from these conditions since the 1960s. Today, there are more than 7 million people living with heart and circulatory diseases in the UK and these diseases still cause more than a quarter of all UK deaths. Healthcare costs relating to heart and circulatory diseases are estimated at £9bn each year. Our ambition is to beat heartbreak forever, and we work to transform the detection and treatment of heart and circulatory diseases and provide support for people affected by these conditions.

 

The extent of unevenness of Coroners services, including local failures, and the case for a National Coroners Service

 

  1. Genetically inherited heart diseases can cause SCD in children and young adults resulting in enormous distress for families which is compounded by uncertainty about extent of risk to other family members. As mentioned above, it is estimated that at least 800 SCDs occur annually in the UK in people under the age of 35 years[i]. In order to identify other family members at risk and prevent further deaths, it is imperative that the underlying nature of the genetic heart disease is determined. Accurate post-mortem diagnosis at autopsy relies on expert examination and histology of the heart[ii] and increasingly on genetic testing[iii].

 

  1. Coroners instruct a coronial autopsy in cases of unexpected sudden death, but utilisation of expert cardiac examination is variable across coronial districts[iv]. Coroners can also authorise longer term retention of post-mortem tissue and genetic material with the consent of the family, but this is also inconsistent across coronial districts. Therefore, the majority of affected families do not currently have genetic material available for post-mortem diagnostic testing, but new opportunities are available to address this problem.

 

  1. The NHS is well advanced in its reorganisation of genetic services into Genomic Laboratory Hubs and Genomic Medicine Centres, and NHS England will in future be funding and ensuring that genetic testing for unexpected sudden death in the young is available throughout the NHS in England.

 

  1. Advances in genetics means that a genetic diagnosis can now be made in a substantial number of such cases providing important opportunity to screen family members within the NHS to determine their risk. Coupled with the imminent establishment of a national Genomic Medicine Service by NHS England[v], which will ensure that such testing can be undertaken, the British Heart Foundation, NHS England and Improvement and relevant clinical experts believe that the time is right to conduct a pilot project with the following aim:

 

  1. We hope that the project will demonstrate the value and feasibility of such testing through a pathway of care within the NHS which does not place a substantial extra burden on the coronial service, thereby providing a foundation for rolling out the service nationally so that there is equitable access across the country.

 

  1. A national coronial service is a pre-requisite to rolling out the service to all coronial districts. 

 

Ways to strengthen the Coroners’ role in the prevention of avoidable future deaths

 

  1. In the context of prevention of SCD it is essential that the following is established:

 

  1. A national coronial service is an essential element in the establishment of the above. As mentioned earlier, the Chief Coroner has committed to supporting the NHS and the British Heart Foundation to delivering a pilot project to support this. The BHF is pleased to confirm that the coroners in the following areas have committed to supporting the pilot:

 

Improvements in services for the bereaved

 

  1. In line with the aforementioned inequity in access to genetic testing and appropriate follow up for families affected by sudden cardiac death, there is also considerable variation in the quality of bereavement support offered to families through the coronial service. Whilst we do not have quantitative data to support this statement, there is anecdotal evidence from affected families that the support they received post a sudden cardiac death was variable.

 

  1. Family support groups should be consulted for advice on how to best support families affected by a sudden cardiac death.             
     
  2. As a minimum, all coroner’s officers should receive regular bereavement training. As a minimum, all coroner’s officers should receive regular bereavement training which should include an understanding of the different practices and beliefs within faith groups.

 

  1. The rituals associated with care of the body after death differs significantly amongst faith groups and this can influence decisions bereaved families make about tissue retention for histopathology. It is important that these attitudes and concerns are understood so that the coroners’ officers can support those families with compassion while making them aware of risk of SCD amongst the surviving relatives of the deceased.

September 2020

 

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[i] PMID: 19700472
The magnitude of sudden cardiac death in the young: a death certificate-based review in England and Wales.

Papadakis M, Sharma S, Cox S, Sheppard MN, Panoulas VF, Behr ER.

Europace. 2009 Oct;11(10):1353-8. doi: 10.1093/europace/eup229. Epub 2009 Aug 21.

PMID: 26143861

The role of genetic testing in unexplained sudden death.

Miles CJ, Behr ER.

Transl Res. 2016 Feb;168:59-73. doi: 10.1016/j.trsl.2015.06.007. Epub 2015 Jun 18.

PMID: 26143861

[ii] ref1. PMID: 24148315

The importance of specialist cardiac histopathological examination in the investigation of young sudden cardiac deaths.

de Noronha SV, Behr ER, Papadakis M, Ohta-Ogo K, Banya W, Wells J, Cox S, Cox A, Sharma S, Sheppard MN.

Europace. 2014 Jun;16(6):899-907. doi: 10.1093/europace/eut329. Epub 2013 Oct 22

[iii] PMID: 26143861

The role of genetic testing in unexplained sudden death.

Miles CJ, Behr ER.

Transl Res. 2016 Feb;168:59-73. doi: 10.1016/j.trsl.2015.06.007. Epub 2015 Jun 18.

PMID: 26143861

[iv] https://www.phgfoundation.org/report/heart-to-heart-inherited-cardiovascular-conditions-services

[v] https://www.england.nhs.uk/genomics/nhs-genomic-med-service/