NHS Coronial Sudden Unexpected Death Programme

On this page

• Project summary
• The challenge for families
• The NHS Coronial Sudden Unexpected Death Pathway explained
• Results of the project
• What happens next
• Who is involved in this project
• More information and support

Project summary

Since 2020, BHF have been working alongside the NHS and Chief Coroner for England and Wales on a groundbreaking project to support families who have lost a family member to inherited heart disease.

We’ve created a new care pathway, called the NHS Coronial Sudden Unexpected Death Pathway. When a person suddenly and unexpectedly dies due to inherited heart disease, this pathway connects their family to specialist NHS services to assess and manage their risk of heart disease. The aim is to reduce the risk of further premature death in the same family.

The challenge for families

Inherited heart conditions are caused by gene variations that are passed on through families. In some cases, they can cause sudden and unexpected death.

If the inherited heart condition can be identified earlier in specialist NHS genetic clinics, it can be treated and reduce the risk of sudden death in family members who have inherited the same gene variation. Unfortunately, many families may not be aware that they have the gene variation and are not being seen by the NHS.

Unexplained deaths are investigated by a Coroner to decide the cause of that death. Where Coroners find inherited heart disease as a cause of death, they often tell family members to contact the NHS to find out their risk of heart disease.

Currently there is no consistent pathway to make sure families can access the specialist NHS genetics clinics if the Coroner has identified inherited heart disease as a cause of death. This can mean some families experience difficulties and delays in getting their risk tested.

The NHS Coronial Sudden Unexpected Death Pathway explained

This new pathway addresses the challenge that some families have of getting their risk tested. It also supports families affected by inherited heart disease.

The pathway was piloted across seven sites as a National Transformation Programme. It was funded by NHS England with BHF providing programme management support.

The programme successfully established a new patient pathway between the Coronial service (Coroner) and specialist NHS services, known as Inherited Cardiac Conditions (ICC) Clinics. This meant that if someone died unexpectedly and suddenly from inherited heart disease, their family had a clear pathway to NHS services to get their risk of heart disease checked and treated.

Local Coronial services are working in partnership with their local ICC clinic to make sure that sudden deaths due to inherited heart disease are identified and that at risk families are followed up. Coroner’s Officers also support families to understand the cause and to signpost them to ICC clinics to identify if they are at risk of the same condition.

Coroner’s Officers also seek the families’ permission to retain a small piece of tissue from the deceased family member so that it can be tested in a specialist NHS lab to identify the gene variation. The Coroners Officer then contacts the ICC clinic with details of the case and the family.

Once the ICC clinic receives the details, families are contacted by a specialist (usually a specialist nurse or genetic counsellor) known as an ICC Coordinator.

The ICC Coordinator arranges for family members to visit the clinic to establish which family members are at risk of the condition and to make sure that the appropriate tests and treatments are organised, including genetic testing, if required. Affected family members are then supported and treated by the clinic with regular follow up appointments. This reduces their risk of sudden and unexpected death due to inherited heart disease.

What happens next

The pathway is now in the process of being implemented across England, through a network of ICC Coordinators (funded by both BHF and NHSE).

They are engaging with Coronial services within their area, to provide consistent access to ICC clinics for families affected by inherited heart disease in their areas.

The pathway has also been expanded to include follow up with families where patients who have had a cardiac arrest, likely to be due to inherited heart disease, and are taken to a hospital.

We hope that the new standardised pathway will be fully embedded across England by the end of 2025.

Who is involved in this project

The success of the pathway expansion across England involves leadership and support from a powerful coalition of stakeholders and partners who are committed to helping at risk families. Including:

• NHS England (via the Genomics Unit and Genomic Medicine Services)
• The Chief Coroner for England and Wales
• The Royal College of Pathologists
• British Heart Foundation
• Cardiac Risk in the Young

More information and support

• Contact our Genetic Information Service. Our GIS cardiac nurses can give you information and support about inherited heart and circulatory conditions.
• Learn more about inherited heart conditions, what causes them and how you’re tested for them.
• Read about the Miles Frost Fund, a project to help make genetic testing available to families affected by hypertrophic cardiomyopathy (HCM).
• Find information on new projects looking an inherited heart conditions, like familial hypercholesterolaemia.