CAPTION: Arabella (pictured bottom) and Holly playing volleyball just weeks before Arabella’s death in May 2013
A year ago next week my 16-year-old daughter Holly’s beautiful, funny, clever,kind, best friend Arabella died. Her mum Clare found her in her bedroom with her GCSE revision books around her. She’d had a normal quiet Sunday with her cousins and grandmother and gone upstairs to study for the following day’s exams and her heart had simply stopped
Arabella was bright, exuberant, hilarious, athletic and the picture of a good health with boundless energy and had not been ill. She had suffered a sudden cardiac death – completely out of the blue and without any warning.
To say she has left a massive hole in all our lives is an understatement – it is a vast gaping chasm and we mourn her every day and the wonderful fun-packed life she should be still living now. Arabella loved horse riding , tennis, Duke of Edinburgh hikes and keeping ducks in her back garden and amongst other achievements had learned all the words to the South African National Anthem (by watching YouTube videos), a song that was played at her unspeakably sad funeral. She loved Barack Obama, Prince William and Kate, the Arctic Monkeys, the Lion King, hugging, Twitter, ‘Toddlers and Tiaras’ and lying in bed (a lot). She could have been anything she wanted when she grew up, the world was at her feet.
Arabella was a member of a large extended loving family but there is always an empty place at their table now.My daughter misses walking to school with her and texting her lines from ‘Friends’ and receiving the next line back in seconds – they were word-perfect on all the scripts. But so many other people miss her too for so many different reasons.
CAPTION: 12 young people a week die a sudden cardiac death in the UK
Could screening save lives?
Arabella is one of 12 young people who die from a previously undetected heart condition every week in the UK (yes it really is that many). I was vaguely aware of the charity Cardiac Risk in the Young’s (CRY) work before Arabella’s death, but have since learned more about their fantastic work in screening young people for potential heart problems, funding research into the causes of sudden cardiac deaths and their work with bereaved families and young people who are diagnosed with a heart condition as a result of screening. They do an amazing job.Open the pages of CRY’s quarterly fundraising newsletter though and I promise you you’ll struggle to hold back the tears – there are pages and pages of photographs of all the other young people who have died – young sportsmen on the football pitch, teenagers off on their gap years, fresh-faced graduates, beautiful new brides,fathers in their 20s, mums who will never see their toddlers grow up – it is heartbreaking. Every death is as tragic as Arabella’s.
I’ve since had two of my daughters screened (the other one will be screened when she turns 14), at one of the mobile screening sessions CRY organise around the country and no problems were detected. I did it because Arabella’s mum Clare said had she known about screening then she would have paid for a test every year of Arabella’s life. Many of the screening sessions are funded by relatives of young people who have died They all feel passionately as Clare does that they don’t want the same tragedy to be repeated in another family. The test takes about 15 minutes . CRY wants all young people to be screened – so do I .
Is screening cost-effective?
Until now health economists have argued these deaths are too rare for it to be cost-effective to screen for cardiac conditions, but now research based on work funded by CRY at St George’s Hospital , London, presented today at the EuroPPrevent 2014 Congress has proved that it is both “feasible and cost effective”.
In the study more than 12,000 people aged between 14 and 35 were screened at a cost of £35 (40 euro) each; rates of subsequent referral for further investigation were low and considered of “a relative low additional cost” to health services. Dr Rajay Narain, Clinical Research Fellow from the Department of Cardiovascular Sciences, St George’s University of London (and CRY) explained that the most publicised cases of sudden cardiac death ( SCD) in young people occur in elite sports players and athletes. Yet the majority of cases occur as a result of inherited cardiac conditions (such as hypertrophic cardiomyopathy), and a large proportion of these, he adds, can be detected during life. SCD in a young person is likely to have resulted from an arrhythmia caused by a mutation in one of the cardiac ion channels or from other inherited conditions affecting the muscles of the heart.
‘To prevent such tragedies,’ said Dr Narain.’Sporting and scientific bodies recommend pre-participation screening in young athletes. However, this approach is controversial because of cost – and most SCDs in the young are likely to occur in non-competitive athletes. It was thus our aim to see if population screening was feasible in this age group.’
The study involved the screening of 12,000 young people irrespective of their athletic ability. Only 13% were considered elite athletes. Screening was performed at a cost of £35 per individual and comprised a health questionnaire, 12-lead ECG and consultation with a cardiologist. Those with abnormalities had an echocardiogram on the day or were referred for further evaluation.
Results showed that almost one-in-ten of the population (9.4%) were sent for echocardiography on the day, and 2.7% (323 individuals) were referred for further assessment. Of these who responded to the questionnaire and completed their follow-up investigations (189), a cardiac pathology (or findings necessitating regular follow-up) were identified in 31 (16%). The most common were heart block (10), irregular heart rhythm (9) and valvular heart disease (6). Different cardiomyopathies were evident in 11 cases.
By applying such a screening programme as the one investigated here, Dr Nairn said that many of the sudden deaths from these conditions, which number around 12- 15 per week in the UK, can be prevented.
Population screening to prevent SCD in young people is “possible and achievable” said Dr Narain, who added: “Most developed countries have the potential for creating an infrastructure in high schools similar to established immunisation programmes. There is evidence that teachers, coaches and even volunteering parents could be trained in ECGs. The incentive is prudent – 25–30% of the population in the Western world is now aged 18 or under.”
CAPTION : Arabella (behind) was full of life
Write to your MP
Practically every MP will have had young people like Arabella die a SCD in their constituencies so maybe it’s worth a letter to yours asking when a national screening programme in schools is going to be introduced? Arabella’s constituency MP Colonel Bob Stewart ( whose daughter was a classmate of Arabella’s) has already done his bit by mentioning Arabella’s death in a parliamentary debate asking :’Can Arabella’s death and the death of hundreds of others of children and young adults be used as a spur to reinvigorate the NHS campaign to identify young people who may suffer a heart attack as a result of a problem that has not been detected, difficult as that maybe?‘
Jeremy Hunt said at the time ( last June), that he was waiting from advice from the national immunisation and screening committee ‘on the right way forward in this respect’ Let’s hope someone puts this research paper right under their noses today.
We can’t bring Arabella back and screening may or may not have detected a heart abnormality in her case – but we may be able to stop more young people dying in the same way.
In the mean time contact CRY to get your child screened – here’s the link http://www.c-r-y.org.uk/ecg.htm
Thanks for the post, Jo. As both a health economist and someone with an Arabella-shaped hole in their life, I find myself in a strange situation.
I’m pleased to hear of this study, which seems promising. But unfortunately it doesn’t quite fill me with optimism. The study screened 12,000 people at a cost of £35 each; a total cost, therefore, of £420,000. Of these 12,000 people, just 31 were found to have a cardiac pathology. The cost, therefore, is just over £13,500 per true positive screen (though this doesn’t appear to include the cost of follow-up tests), which is roughly equivalent to what the NHS spends on saving 6 months of one person’s life (see https://www.york.ac.uk/che/research/teehta/thresholds). If just one of those 31 would have shared Arabella’s fate then the intervention would almost certainly be cost-effective. However, I believe the incidence of SCD is, thankfully, much much lower. As such the cost per case avoided would probably still be in the order of several million pounds. Of course this would be worth it to us in respect to Arabella, but at a societal level it would be at the expense of the health and longevity of many other deserving people. I look forward to reading the full paper once it is published, but fear its current message is over-simplified.
I really hope there comes a time when we can implement screening, but I suspect there is still much work to do. Efforts should focus on further research, and CRY’s screening programme is crucial to this. Personally, I feel the answer may lie in identifying those at higher risk and targeting screening accordingly, which could reduce the cost per positive screen (please excuse the self-promotion here, but I have written a paper on this: http://ideas.repec.org/p/pra/mprapa/51799.html).
In the meantime hopefully both our efforts will contribute to a future in which we don’t have to face such tragedies.
I hope so too Chris – hard to put prices on the lives of such young vibrant people don’t envy NICE etc very difficult decisions, but having taken Holly and Annie to a screening appointment and seen how quickly it can be done I’d like to think it could be done routinely in schools just like their HPV jabs.
I tend to agree. The cost of administering it as an ‘add-on’ to other school-based healthcare could be much lower than the £35 figure. It also seems feasible to me that at some point in the near future ECG readings could be assessed for normality by a computer. Computers are cheap. Cardiologists, not so much.
Reblogged this on whatsupwithyourhealth.wordpress.com and commented:
It’s Cardiac Risk in the Young Awareness Week so I’m reblogging this post about lovely Arabella Campbell and how screening can prevent more deaths like hers