CRY Centre for Cardiac Pathology leaflet

CRY CENTRE FOR CARDIAC PATHOLOGY After a young sudden cardiac or unascertained death, expert cardiac pathology is essential

Offering help and support to affected families @CRY_UK CardiacRiskintheYoung www.c-r-y.org.uk

Information Information for forCoroners Coroners

80% of coroners routinely refer for expert cardiac pathology after a young sudden cardiac death

Specialist cardiac pathology at the CRY Centre for Cardiac Pathology is free of charge, when: • •

the cause of death is unascertained, and; the person is aged 35 years or under.

Examination/report We aim to issue a report to the coroner within 2 weeks of receiving the specimen.

The coroner should then pass this information on to the family and GP without delay.

Information about the service can also be found here: www.cry-ccp.org.uk

To make a referral:

Contact the CRY CCP Secretarial Office; Tel: (0208) 725 5113 Fax: (0208) 725 5139 Email: m.sheppard@sgul.ac.uk Please note that Cardiac Risk in the Young (CRY) covers the cost of the referral if the deceased is aged 35 years or younger. If the deceased is over 35 years of age the coroner will be invoiced for the referral cost.

Address for correspondence: Prof. Mary Sheppard Department of Cardiovascular Pathology Jenner Wing St George’s University of London Cranmer Terrace London SW17 0RE

The importance of consent from the family: It is extremely helpful if the coroner requests permission for the whole heart to be sent as this greatly facilitates the accuracy of the diagnosis. The family can request to have the heart returned for the funeral.

However, if the family only give permission for tissue to be taken from the heart at autopsy it will be stored at the CRY CCP at St George’s University of London.

It is also very important for the coroner to request consent for tissue samples to be retained indefinitely by the CRY CCP for teaching and future research.

Address required for delivery of specimens: Prof M N Sheppard Goods In Site Services St George’s University of London Cranmer Terrace London SW17 0RE

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www.cry-ccp.org.uk

Information for GPs

Expert cardiac pathololgy is essential to: • •

help families understand the cause of death inform clinicians what to look for in other family members (first degree blood relatives)

“I think it is very important that general practitioners become aware of conditions causing sudden cardiac death in young people. Before my own daughter, Laura, collapsed and died in front of me in 2003 whilst working in my surgery, I knew little about the subject.

She had undiagnosed arrhythmogenic right ventricular cardiomyopathy (ARVC). It is through my subsequent contact with Cardiac Risk in the Young that my own awareness and knowledge has increased.

Although these conditions are uncommon for individual GPs, there are many of them and in practice, rare things occur commonly. They could affect any one of the families in a GP’s care at any time, and in my opinion, knowing where to obtain good support, information, and advice is crucial to effective general practice care. CRY is this source.”

Dr Tony Hillier, GP. On completion of the pathology examination, Professor Sheppard recommends that the family should be screened by a cardiologist with expertise in inherited cardiovascular conditions.

Professor Sheppard’s diagnosis provides vital information for the cardiologist which will direct the investigations of those individuals at risk.

It is important to refer family members to a specialist cardiologist after a diagnosis is made because many of the heart conditions which cause sudden cardiac death are inherited.

Professor Mary Sheppard works closely with the fast-track screening service at the CRY Centre for

Registered Charity No. 1050845

Inherited Cardiovascular Conditions, London – a vital link offering screening to all first degree relatives together after a sudden death.

The cardiologist will be provided with a copy of the pathology report, on request, from Professor Sheppard.

CRY can provide advice regarding referrals for expert screening for family members.

The process: • When Professor Sheppard examines the heart a small amount of tissue is taken from the heart which is embedded in wax. From these wax blocks thin sections are cut to examine microscopically for hidden disease that cannot be seen by the naked eye.

• The family should always be asked by the coroner to preserve these blocks and slides indefinitely.

They are an invaluable resource for research and teaching.

• If permission has been obtained by the coroner for the heart to be sent to Professor Sheppard it will be returned to the coroner within 2 weeks, in time for burial.

• Taking of the spleen may be required for genetic testing at the time of autopsy. This is only taken if specific consent for research, teaching and genetics has been obtained.

• If specific consent to retain tissue for the purposes of research and teaching is not received then the heart tissue blocks and slides will be returned to the referring hospital.

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Further Information

Professor Mary Sheppard

Further support

Professor Sheppard MB BCh FRCPath is a fellow of the Royal College of Pathologists and Professor in Cardiovascular Pathology at St George’s Medical School, London.

She is an expert cardiac pathologist and has established an international cardiac referral centre at the CRY CCP with funding from the charity Cardiac Risk in the Young (CRY) to investigate young sudden cardiac deaths.

Following a young sudden cardiac death (YSCD) families will often seek emotional support and further information.

Professor Sheppard undertakes extensive research and is widely published. Her textbook on cardiovascular pathology is now in its third edition.

She is a recognised teacher at St George’s Medical School and is an invited speaker at national and international meetings.

Professor Sheppard is the cardiovascular pathology representative on the specialist advisory committee of the Royal College of Pathologists. In addition, she is president at the European Association of Cardiovascular Pathology.

Professor Sheppard is an advisor to governmental bodies in relation to cardiovascular pathology and on the UK steering group developing a national database on sudden cardiac death. She is also the pathology representative on the board of the National Association for Inherited Cardiac Conditions.

CRY’s bereavement support network is made up of volunteers with experience of a similar tragedy who have undertaken CRY’s BAC accredited counselling training to help others cope with the experience.

CRY also provides opportunities for bereaved families to come together at Bereavement Support Days.

CRY has private Facebook groups where people (aged 18 and over) can connect and share experiences with other people who have been affected by a young sudden cardiac death.

Families affected by YSCD need to understand the potential genetic risks, and to help them, CRY provides specialist cardiac information suitable for people from non-medical backgrounds. www.c-r-y.org.uk/bereavement

For more information about CRY, please visit www.c-r-y.org.uk

Cardiac Risk in the Young Unit 1140B The Axis Centre Cleeve Road Leatherhead Surrey KT22 7RD

@CRY_UK CardiacRiskintheYoung Tel: 01737 363222 Email: cry@c-r-y.org.uk V2 2018.05 C004