Alison Cox: Cardiac Risk in the Young

31st July 2009

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ePolitix.com speaks to Alison Cox MBE, founder and chief executive of Cardiac Risk in the Young (CRY), about the organisation and its screening programme.

Could you tell us about your screening programme and the Test My Heart tour 09?

Alison Cox: I started screening in 1993 before I even started CRY and we have developed into an organisation capable of doing a number of types of screening; at clinics, in schools, in sport and in communities. We go out on request and unless the event is fully funded we will charge the highly subsidised rate of £35 for an ECG which includes a follow-up echo on the day if an abnormality is detected.

Our screening programme dramatically moved forward this summer when Philips Healthcare were co-sponsors of our Test My Heart tour, which visited 13 locations in England and tested over 2,000 young people's hearts to detect abnormalities that could lead to sudden death syndrome. This was launched in Durham on May 2, 2009, and concluded in Brentford at the end of June covering 13 stops in communities and universities. We are now determined to maintain the massive momentum this tour afforded us and intend to have at least one tour a year in the future.

Philips Healthcare had already donated state of the art cardiac machinery valued at £340,000 for our screening programme which was used on the tour, as well as £200,000 to screen elite athletes. We started screening athletes prior to the Beijing Olympics, covering a number of sports including cycling, and screened Chris Hoy prior to his Olympic triumphs. We are hoping to have offered screening to all elite athletes well before the 2012 Olympics.

Looking back to when the organisation began, have your goals changed?

We started with four goals - raising awareness, screening, research and support and these are the goals we are still working with. So our goal structure hasn't actually changed at all. Each year we try and push and develop that a bit more. A big change for us this year is that the CRY Centre for Sports Cardiology, which has been based at the Olympic Medical Institute since 2002, is closing. So we will be reformatting how we are going to take that forward. It will co-ordinate with our screening programme which is under the aegis of our consultant cardiologist Dr Sanjay Sharma, who donates all his time at no charge to oversee the screening programme.

What more do you think could be done to help the cause?

Our families would all like to see a government screening programme but this would inevitably be complicated and expensive to introduce. CRY is driving the agenda forward with our own screening programme which is funded mainly by CRY families. Our goal is to make this available to everybody throughout the UK. Every year we are expanding our UK coverage and we are finding increasing interest and less resistance to what we are doing.

Twelve young people (35 and under) die in the UK each week from sudden death syndrome. Twelve deaths a week is a considerable number. It is considerably higher, for example, than cystic fibrosis with which the public is much more familiar because with cystic fibrosis the terrible suffering of the child and the deterioration of their health is very apparent. Our young people that die are fit and healthy and dead within seconds with little chance of resuscitation, so the suffering is not witnessed. The legacy of grief endured by the family is not formally recognised and part of CRY's job is to highlight the terrible aftermath of the suffering inflicted by these unnecessary tragedies.

We are aiming to normalise screening as is now starting to happen in other countries. Our first tour has gained real momentum for this position and screening is far less controversial an issue now than it was when I started CRY in 1995.

What would you say the key achievements of CRY have been so far?

The CRY Centre for Cardiac Pathology based at the Royal Brompton Hospital with expert cardiac pathologist Dr Mary Sheppard has been a massive achievement. £500,000 was raised by relatives and friends of Howard and Sebastian English after Howard's incorrect pathology led to the sudden death of his son Sebastian 10 years later. I believe that this is the first dedicated young sudden death centre for pathology in the world that has its own dedicated laboratories and which offers a free service to UK coroners and a two week turnaround for post mortem. Prior to this centre being established, coroners did not have a fully funded referral base to which to refer hearts and tissue for further investigation and often expert pathology took between one and two years to investigate and was expensive.

This has made a real contribution to reducing the suffering of our bereaved families. Having to wait for up to two years to find out the cause of death of their child or young partner, whilst all that time knowing that another member of their family could be at risk (as these are genetic conditions), must have been a very frightening experience. Very often GPs won't allow the further genetic screening that is required until the results of the post mortem have been received by the coroner. Consequently, there was a real risk that there could be another tragedy. It seemed barbaric and we were very lucky to have had the opportunity to instigate this vital service provision

On a more political note, in terms of the forthcoming general election and a new government, what would you expect in terms of support?

David Cameron became a member of the CRY APPG shortly after it started and I know a number of members of his shadow cabinet who have been long term supporters of CRY. All MPs of course first and foremost are constituency MPs, and all constituencies will have experienced a sudden cardiac death. Some MPs have joined the group, some have not. We currently have 121 members of the CRY APPG which is over a sixth of the House.

Since Labour is in power, I obviously know more Labour MPs but I have not detected any lack of enthusiasm from the Tories. Many of them have been absolutely fantastic in their support too. In fact, the new chair of the CRY APPG, Roger Gale, is a Tory. A cross-party group has cross-party obligations and I am absolutely confident that the Tories will be as brilliant at supporting us as Labour has been.

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