Question: Explain more about the postcard campaign CRY launched on July 15?

Alison Cox: This was an idea of Kevan Jones, MP for North Durham and chairman of our all party parliamentary group.

It will be a hard hitting campaign, on one side of the post card will be coloured photos provided by the families of eight children that have died of sudden cardiac death with a message that up to eight young people a week are dying of these undetected heart conditions.

On the reverse of the post card it will be addressed to the MP and each family involved will be given a hundred cards for relatives and friends to send to their MP urging them to support CRY’s campaign.

The campaign is going to run for at least 12 months and through our 10th anniversary in 2005, but it will carry on if it is successful and families want to keep contributing.

A different area in the UK is going to be targeted each month using eight different photographs each time - so a minimum of 12,000 postcards will be printed in total.

The campaign is timed to coincide with the consultation process on a new chapter on Arrhythmias and Sudden Cardiac Death in the National Service Framework in which sudden death in the young and screening is a sub group.

The expert group for this new chapter was announced as part of the offer made by health minister Melanie Johnson to Dari Taylor at the conclusion of a successful campaign conducted by CRY supporters for Dari’s Cardiac Risk in the Young (Screening) Bill, heard on March 12th .

The committee's report is due to be published on March 5th 2005.

The postcard campaign was launched at the House of Commons with the first focus on the Midlands.

This was a successful well-attended event even though it unfortunately coincided with two by-elections in Leicester and Birmingham which meant we were unable to have any of the Midlands MP’s there.

The next postcard is going to be launched in the South West on August 26th in Devon and then the following month it will be in the North East.

Question: What is the aim of the postcard campaign?

Alison Cox: The aim of the postcard campaign is that it should run in tandem with the National Service Framework Consultation on Arrhythmia and Sudden Cardiac Death.

Statistics suggest there are 3,500 sudden cardiac deaths a year of which 400 are relevant to CRY. So you can see why we must work hard to keep the spotlight on sudden death in the young.

I believe that these young deaths are at the cutting edge of grief. It is always horrible when somebody you love dies, even if they are 100 years old. But the death of a 16 year old who is fit and healthy does not compare with the loss of an older person.

Shocking though this still is they have lived their lives. Young people have their whole lives ahead of them and that is why these deaths are so excruciating.

The aim of the campaign is to keep working with the media, keep reminding them that this consultation is going on.

We want to urge MP’s to please join our all party parliamentary group. I am hoping by the end of the postcard campaign we will have at least 100 MPs in the CRY APPG. If we do then we will be in a good position to get things done.

Question: You say there are eight lives lost a week - is this a realistic snapshot of the problem?

Alison Cox: There are no accurate statistics. Deaths go down as natural causes, unascertained, heart attack, sudden cardiac death, SADS, epilepsy, asthma - even pneumonia.

One mum said to me that one minute her son was fully fit and having a normal conversation with her and then 10 minutes later he was dead and they put on the post mortem he had died of pneumonia. How can a young person get pneumonia in 10 minutes? How many drownings or car accidents could be from a sudden cardiac death? No one knows.

When I started CRY in 1995 I was initially told it was one death a week. Within three years I was told we could now say it was four a week. Now I have been told that I can say it is up to eight a week so you can excuse me for being fairly cynical when somebody says how accurate are your statistics.

Question: Screening can identify the risk - so why isn’t this done more?

Alison Cox: Because of the cost and logistical problems. Screening identifies most of the conditions that are genetic and can kill swiftly.

If a person is found to have a condition it is treatable through medicine or increasingly through successful implantation of internal cardiac defibrillators.

It isn’t done more because of logistics and cost. Mass screenings are difficult and expensive to organise.

It is cheaper not to do it until you measure the cost of these deaths. But you can’t scientifically measure the cost of the death of a young person - it is immeasurable.

Question: Have you got different themes running through the different launches of the postcard campaign?

Alison Cox: To some extent there are different themes. The theme in the South West is focused around a family that have had three deaths, two of which were under 35. This highlights that these conditions are genetic.

In the North East we will be highlighting the condition Wolf Parkinson White (WPW) which 75,000 people in the country carry, but many are unaware that the high risk group is the young. Two people in that campaign knew they had the condition. The boys were told to get on with their lives and then they died.

Young people, under 35, who have WPW should always be considered for ablation surgery. Raising awareness of the risk is a crucial part of CRY’s work. So to some extent there is a theme but every picture on the postcard isn’t pertinent to the theme.

Question: Do those in the high-risk category get access to screening?

Alison Cox: Through CRY’s programme they can. We have launched six clinics throughout the UK where screening is subsidised. These clinics are for people who are concerned they could be at risk and aren’t able to have access to screening through the NHS.

There are lots of other people who are unsuccessful in persuading their GP they need to be screened because the GP doesn’t fully understand the potential consequences.

Our cost for an ECG, echo and diagnosis for young people is £200. We believe that although £200 is quite a lot of money to young people it is affordable if you are desperate enough.

Alternatively you can go to an ECG clinic and the cost is £35 for an ECG to include follow up echo if an abnormality is detected.

Screening is expensive and so we are doing our best to help those that are anxious - for example a young person who might have had a friend die.

Often nothing will persuade that person that they are not also at risk except screening. We are hoping CRY clinics will increasingly be part of NHS hospitals.

Our first CRY ECG clinic was launched in Colchester General Hospital in May by Caroline Gard whose son Andy dropped dead aged 17. These are on a Saturday mornings every other month.

Question: What support do you get from the government?

Alison Cox: We have had increasing interest and support from government. It has been a long hard trawl I have to say.

Adrian Woodhead, whose wife aged 27 died in his arms, kick-started our work in parliament by writing to MPs in 1998.

We had our first adjournment debate with Julian Lewis, Adrian’s MP when Yvette Cooper, then minister of health, responded in 2001. This year of course we had Dari’s private members' bill on cardiac risk in the young which led to the offer from the Department of Health. So we are feeling much happier now.

We feel we have got young sudden cardiac death very firmly on the agenda and that CRY is getting known. However there is still a long way to go and that is why the postcard campaign is so important.