Families who have experienced the sudden, unexplained death of their child often ask, “Should I have my other children tested?, “Should we be tested?” or “What about our other relatives?” These important questions may be followed by the response of “Tested for what?”. At this time, we do not know how to predict or prevent deaths which we do not understand. However, we do know that some rare, inheritable disorders can cause sudden death.”
Differences in death investigations and medical histories mean it is difficult to make specific recommendations appropriate for all affected families. Therefore, it is important that GPs/paediatricians discuss tailored medical screening with each family affected by sudden, unexplained death. Please consider the following resources for your assistance.
Resources from the SUDC Foundation
The SUDC Foundation has excellent information on medical screening. Please click here to access this site and learn more including their guidance document entitled, “Providing Care for the SUDC Family: Medical and Bereavement Information to Help Clinicians when Caring for Families”.
UK National screening resources
1. Inherited Cardiac Conditions (ICC) Clinics: Cardiac (heart) channelopathies are heart rhythm disorders which are associated with sudden death. Across the UK, there are inherited cardiac conditions clinics run by cardiologists, paediatric cardiologists and geneticists who specialise in these disorders. These specialists will have experience in supporting other families affected by SUDC. GPs can refer to a regional inherited cardiac conditions clinic for families. Once referred, it may take 8-12 weeks to see a specialist. It is worth asking if it is possible the referral could be marked as urgent as this may speed up the process.
2. British Heart Foundation (BHF) – https://www.bhf.org.uk/informationsupport/support/heart-helpline The BHF’s helpline is supported by nurses who can help facilitate and write to GPs explaining the need for a referral. They can also let you know your nearest regional ICC service.
3. ‘CRY- cardiac risk in the young’ CRY screening at www.testmyheart.org.uk is for any person 14-35 who is asymptomatic. Their ambition is for all young people to have chance to be screened from the age of 14. For families affected by SUDC, they advise to go via the NHS. If the GP is unwilling to refer your family, CRY may offer screening to enable them to write to the GP advising the referral pathway. For their phone number and more information on screening visit https://www.c-r-y.org.uk/.
4. SADS – for more information on Sudden Arrhythmic Death Syndrome visit https://www.sads.org.uk/
5. SUDEP Action – for information on Sudden Unexpected Death in Epilepsy visit https://sudep.org/