4 minute read
Sandra & Jeff Markham: Representatives
Representatives in Middlesex
When in November 2001 our son James collapsed and died outside the family home, we were devastated. How could a seemingly fit and active twenty one year old die without warning?
At the time of James’ death Sandra was recovering from a broken leg and our GP made a house call. He thought James may have died from a cardiac arrhythmia. His thoughts proved to be invaluable.
When researching after James’ death we found CRY and they, along with close friends and relatives, were amazing. CRY introduced us to Professor Sanjay Sharma, and he thought James had died from Long QT. The family were all tested but nothing conclusive was found.
The original Inquest came and went but we remember little about it. James death was recorded as “Unascertained” with “Natural Causes”, but as time passed we become more and more unhappy with the verdict.
We understood DNA testing was not available on the NHS at this time, but a friend arranged to have it undertaken in Denmark. It took more than two years to get the results back, but they showed conclusively that James had died of Long QT. This vindicated Sanjay’s original diagnosis, and there followed DNA testing for the family. All tests all came back negative, and it was a massive relief that our daughter Abi was clear.
We then turned back to James’ death certificate, and after several unsuccessful starts, had a successful outcome in the High Court ordering a fresh Inquest. After this was undertaken, James’ death was then correctly recorded as Cardiac Arrhythmia Long QT. Throughout this long process we had really good support from our Coroner, Coroner’s Officer and Alison Cox at CRY.
We had maintained close contact with CRY, receiving great support from the Bereavement Support programme, and we thought it was now time to give something back. In 2014 we offered to become CRY Representatives, with an aim to support other families with their own Inquests.
We have been able to do that; helping some families with difficult inquests, and also worked with CRY staff in producing a booklet and online information about the pathway most coroners investigations will take.
We also wished to raise awareness and routinely visit local schools, normally to talk to 6th formers, about the work CRY does and the implications for young people. We are encouraged that schools invite us back on an annual basis to talk to their new 6th formers, and one school has said we have been visiting them for the last ten years.
We know many students have gone on to attend CRY screening events, and we feel this makes our school visits so worthwhile. At one screening event a young man was picked up as having acute problems, and we met him again a year later. He showed us the scar on his chest where his ICD is fitted, and said that if had had not attended the screening event, he would probably been one of the 12 young people that pass away every week.
After attending several excellent Bereavement Support sessions with CRY, we decided we wanted to maintain social contact with other bereaved families, and so started “Walk and Talk”. We meet up on periodic Sundays, go for a walk, and end up having lunch.
We were delighted in the autumn of 2014 CRY offered to endorse and help with the advertising. We now have three other groups, one run by Linda & Geoff Goodwin in Gloucestershire, another by Dave & Sue Hughes in Stoke on Trent, and most recently with Jenny Thomas in Devon.
If you are interested in joining one of the groups, please get in touch via the details below.
