It was fantastic to see the work of CRY and our screening programme talked about so strongly by members of government on Tuesday night. This was an excellent debate lead by Mims Davies MP, from Eastleigh, on behalf of Graham and Anne Hunter in memory of their daughter Claire, with cross party support from many MPs who had either been affected personally or were representing their constituents. Mike Gapes MP spoke about the impact on friends as well as family after his own daughter died in May 2012.
Jane Ellison (Parliamentary Under Secretary of State for Public Health), concluded the evening reiterating a number of statements made in the recent report by the National Screening Committee (NSC). CRY’s response to this report was published in the NSC document and can be read at www.c-r-y.org.uk/NSC2015 It was a surprising the health minister gave so much support to the NSC report which directly contradicts current clinical practice within the NHS and policies including the National Service Framework chapter 8, NICE T Loc guidelines and European Society of Cardiology and American Heart Association screening recommendations.
It was also disappointing that when Ms Ellison drew attention to important research in the UK, there was no acknowledgement of what CRY families have achieved in raising the funds to offer screening to more than 80,000 young people and the research this has fed into. CRY families have raised more than £2,500,000 to offer screening to young people in the UK and they have funded over £2,000,000 to support research. This has resulted in well over 100 peer reviewed publications and the training of 21 specialist doctors. This research has also influenced clinical practice throughout the world as well as international screening policies.
Since 1996 Professor Sanjay Sharma and CRY have been instrumental in focusing research on improving the way we screen, reducing the number of unnecessary follow up tests (false positives) and developing novel ways of making screening cost effective. As a result we are continually reducing the grey area of uncertainty and making a national programme more viable. It is disappointing there was no mention of this from the health minister, when the work by Professor Sharma and CRY is treated in such high regard internationally.
Whilst CRY acknowledges the challenge of implementing a cardiac screening for young people this must be kept in context. Screening programmes will always have challenges because you are potentially introducing a risk to a person at a time when they do not feel at risk with the aim of preventing a much greater consequence. This is one of the reasons why CRY has always stressed the importance of expertise when conducting these investigations
Transcript of the debate is available here
CRY’s full statement is response to the National Screening Committee’s decision can be found here
The National Screening Committee’s report can be read here
CRY’s press release after the announcement by the National Screening Committee available here