Since 2005 CRY has funded over £5 million to support fast-track NHS cardiology referral services for families after a young sudden cardiac death and expert pathology investigations after a tragedy.
In 2018 CRY will be providing over £800,000 of grants to St. George’s University which will fund the CRY research programmes and the clinical support services for bereaved families at the CRY Centres within St George’s University Hospitals NHS Foundation Trust in London.
This funding includes full grants for eight clinical cardiology doctors (CRY research fellows) who are training to become specialists in young sudden cardiac death under the supervision of world expert Professor Sanjay Sharma. We have now trained more than 25 specialist doctors many of whom have now become cardiology consultants in hospitals throughout the UK. The most recent appointment is Dr Abbas Zaidi who took up a consultancy post in Cardiff last September.
CRY is also funding two physiologists at the centre. These physiologists will conduct the clinical tests that families require as part of the NHS referrals. CRY also funds two nurses who will support families at the time of the referral and be involved with the clinical testing. These nurses are particularly important when it come to the ajmaline (provocation) test. This enables SADS families to have all tests done on the same day as the first appointment, often just weeks after the referral has been made. The CRY team always try to see families on the same day, so they are together when they are tested. This is something which is very difficult for other clinics to emulate and only possible because of the way in which CRY works in partnership with St George’s and Professor Sanjay Sharma’s team of specialists.
For the past 18 months CRY has also been funding a cardiologist to work with Professor Sharma and the clinical team to increase the number of families we can offer support to at this unique centre.
As well as funding the staff, CRY is also funding the cardiac machinery (ECG / ECHO / VO2 max exercise bike / holter monitors) required to conduct the tests. We have recently purchased a state of the art echo machine to ensure the world experts also have the best tools to work with. This will not only help with NHS referrals but also to investigate new areas of research.
CRY also funds the CRY Centre for Cardiac Pathology at St George’s which works closely with the cardiologists. This centre consists of a team working under Professor Sheppard dedicated to identifying the cause of death of more than 200 young people every year. The vast majority of these tragedies will be because of SADS deaths, where no clear cause of death has been identified after the initial post mortem investigations. A report is produced within two weeks. Before the centre was established it could take up to two years for families to find a cause of death. These are essential investigations to not only help understand what has caused the tragedy but they also provide vital information that informs how other family members are tested by the cardiology team.
This is truly a unique comprehensive clinical service that would not be possible without CRY. Thousands of people are benefiting from this service every year, at probably the largest, most comprehensive, inherited cardiac conditions referral service in the world.
Through funding these centres CRY is demonstrating what can be achieved when a significant proportion of the funds donated to the charity are allocated directly towards essential clinical services for bereaved families.
As well as funding the screening of tens of thousands of young people every year, it is also important for our supporters to be aware of the incredible NHS services they are also funding. Without these clinical support services, families from all over the UK would not be given an accurate cause of death and they may not be given a correct diagnosis. Since CRY was founded in 1995 we have been fighting for all families to be referred to specialist centres where they will be given all the necessary tests to know if they are also at risk. Thankfully this is starting to become the norm, rather than the exception.
Dr Steven Cox