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Sudden Cardiac Arrest

Identifying people who are at risk following a sudden cardiac arrest in the family.

What is Sudden Cardiac Arrest?

Sudden Cardiac Arrest (SCA) and Thoracic Aortic Dissection (TAD), is the sudden and unexpected loss of heart activity. Where this happens suddenly out of hospital, your medical team may explore whether a genetic condition could have contributed to your cardiac arrest.

Understanding any underlying cause is essential, not only for your own treatment and follow-up but also to help identify and protect family members who may be at risk if  an inherited condition is identified.

Why is this important?

There are approximately 60,000 sudden cardiac arrests a year in the UK, and the survival rate out of hospital is around 10%.

Where the cause is genetic or ‘inherited’, determining the underlying nature of the genetic heart disease is important for identifying other family members at risk and preventing further sudden arrests or deaths in other family members.

We are establishing a new pathway which will aim to include all those who experience an out of hospital sudden cardiac arrest or aortic dissection unexpectedly between the age of 1 and 60, where an inherited cardiac condition (ICC) is thought to be likely.

There are three key parts to the pathway:

  1. Routine blood sample retention for genetic testing when there is a potential genetic cardiac cause of the arrest,
  2. Investigation and communication to an Inherited Cardiac Care Centre,
  3. Signposting of eligible family members for follow-up and screening for the same condition.

Currently, this pathway is inconsistent across England; many sites do not have this pathway set up and some family members are not signposted to the ICC Centre or blood samples retained.

Identifying a family where an inherited cardiac condition has led to SCA or TAD means they can be screened and monitored if necessary; their condition managed with the potential to save their lives.

What have we done so far?

We have developed a local Trust clinical pathway with cardiologists, inherited cardiac conditions (ICC) coordinators, and ITU teams.

We have established the pathway pilot sites including Guy’s and St Thomas’, St George’s Hospital, Kings College Hospital, and Frimley Park. We are delivering education sessions to ITU teams to successfully and confidently implement this pathway into their routine care.

Once patients and family members are identified, they may be referred to one of the region’s ICC clinics, based on clinical appropriateness. There, patients and their families will be supported through the cardiac clinical screening and cascade testing process, as well as providing genetic counsellors to offer further support.

What are the next steps?

We want to make this a routine pathway within every service across the South East. Our ICC coordinators will begin engaging with Trusts and ITU departments across the South East

Are you a cardiology consultant or work in ITU and want to set this pathway up in your Trust?

We have more information for you!

Resources for professionals

We have developed a full pathway implementation toolkit to help you and your teams establish and sustain a pathway for DNA storage and referral when someone presents with an out of hospital cardiac arrest or thoracic aortic dissection.

Pathway Implementation Toolkit

Click the link below to open up the NHS SCA and TAD pathway. This identifies the steps taken by ITU teams and ICC centres after someone has experienced a Sudden Cardiac Arrest or Thoracic Aortic Dissection.

SCA and TAD pathway

In this one hour recorded webinar from June 2026, you will hear from Professor of Cardiovascular Medicine, Prof Elijah Behr from St George’s Hospital, and Clinical Nurse Specialist in Inherited Cardiac Conditions, Helena Davison from Queen Elizabeth University Hospital.

 

Professor Elijah Behr is the clinical lead of this project in the South East, and Helena discusses the successful initiation of their own Sudden Cardiac Arrest Pathway in Scotland.

Lunch & Learn about our Sudden Cardiac Arrest pathway

The link below will take you to our webpage with two informative videos about when a genetic test is useful for a patient and how to identify the correct genetic test for your patient.

Genetic testing explained - SE GMS wesbite

We have also established a pathway for people affected by Sudden Cardiac Death. This includes engaging with coroners, pathologists, and medical examiners across the Region and implementing a pathway for genetic testing after someone has died due to an inherited cardiac condition. Click the link to learn more: Sudden Cardiac Death Project – South East Genomics : South East Genomics

Browse our other webpages dedicated to cardiovascular genetic testing

Cardiovascular Genetic Testing
ICC education resources

Resources for families and those affected by Sudden Cardiac Death

Read and download our leaflet for families affected by Cardiac Arrest and Thoracic Aortic Dissection. This will provide guidance on genetic testing, explain what conditions can cause SCA and TAD, and signpost you to further support.

Sudden Cardiac Death Family Pack

In this one hour recorded webinar from June 2026, you will hear from Professor of Cardiovascular Medicine, Prof Elijah Behr from St George’s Hospital, and Clinical Nurse Specialist in Inherited Cardiac Conditions, Helena Davison from Queen Elizabeth University Hospital.

 

Professor Elijah Behr is the clinical lead of this project in the South East, and Helena discusses the successful initiation of their own Sudden Cardiac Arrest Pathway in Scotland.

Lunch & Learn about our Sudden Cardiac Arrest Pathway

Watch the video linked below to learn more about what genetic testing is. This video is aimed at professionals, but may give you a better indication of why genetic testing is done, as well as why genetic testing has been recommended, or not recommended, for you or your family.

When is genetic testing clinically useful?

The British Inherited Cardiovascular Conditions website allows you to search for your nearest ICC centre or view all centres nationally.

We have also established a pathway for people affected by Sudden Cardiac Death. This includes engaging with coroners, pathologists, and medical examiners across the Region and implementing a pathway for genetic testing after someone has died due to an inherited cardiac condition. Click the link to learn more: Sudden Cardiac Death Project – South East Genomics : South East Genomics

 

Who are we working with?

The British Heart Foundation, who provided the funding for this pathway initiation

Inherited Cardiac Conditions clinics across the South East (including ICC coordinators, specialist nurses, and genetic counsellors)

ITU teams across the region

Meet your C-SUD pathway coordinators

Ciara Gorman

Ciara is an Inherited Cardiac Conditions (ICC) nurse at St George’s Hospital, currently working as the Sudden Unexpected Death (SUD) Pathway Coordinator. With a background in coronary care, she became a specialist Arrythmia nurse at Kings College Hospital. She recognises the impact that a diagnosed inherited cardiac condition can have and is passionate about supporting patients and their families to be informed about genetic testing.

Regions served:
  • London Inner West
  • London South
  • Surrey
  • West Sussex, Brighton and Hove
If you are a Trust within these areas, speak to Ciara for more info or to refer in:

SCD.referrals@stgeorges.nhs.uk

Jana Garasashvili

Jana is a Genetic Counsellor specialising in Inherited Cardiac Conditions at Guy’s and St Thomas’ NHS Foundation Trust. Her passion is improving patient and family experience. She believes the Sudden Unexpected Death (SUD) pathway can reduce the stress of navigating healthcare following the tragic loss of a loved one, as well as leading to improved health outcomes for families.

Coronial regions served:
  • East Sussex
  • Kent Central and South East
  • Kent Mid and Medway
  • Kent North East
  • Kent North West
  • London Inner South
If you are a coroner within these areas, speak to Jana for more info or to refer in:

GSTT.SCDreferrals@nhs.net

Meet the team

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