Page 22 - Community Living Magazine 35-2

premature deaths

‘We felt our concerns would now be believed. We did

not anticipate the inertia and lack of responsibility’

After the death of her son Danny, Rosemary Tozer had to deal and to call an ambulance if he was still
with not only grief but also agencies that were keen to avoid having a seizure after five minutes. The
month before, in a minuted meeting, we
taking blame. Her battle against such attitudes will continue had emphasised that, when behind a
closed door, he should be checked
constantly in case he fell.
ur son Danny was just 36 when he In adulthood, Danny was full of life and We arrived at the hospital to be told by
died unexpectedly in September fun and a people person, enjoying pubs, the house manager that he had been left
O2015 following an epileptic seizure clubs and cafes, playing his piano, outdoor for 30 minutes in his bedroom then found
at a supported living house run by activities and drinking lots of tea. unresponsive. The paramedics restarted his
Mencap. He could not ask for help when heart but the house had no defibrillator.
he felt unwell that morning and did not The phone call “What for?” was the response.
want to get up. When we had a phone call one morning Later, we found out that Danny had
Sad indeed, but why is this still of saying “you’d better get here quick – he’s been sent to hospital by ambulance
interest after all this time? Have his in cardiac arrest”, we were shocked but unaccompanied. The consultant reported
parents not yet come to terms with his not surprised. that Mencap staff did not believe he had
death and found “closure”? Our lack of surprise followed two years had a seizure. His seizure mat had not
I have wondered how to put into words of concern for Danny’s wellbeing in his alarmed – we had seen it unplugged or
here what happened, when we have placement. Common problems we raised not working on visits. The house manager
already written thousands for ourselves, included staff shortages and inconsistent tested it on arriving at the house as Danny
lawyers, coroners, ombudsmen and approaches, low expectations and was leaving and it had failed to function.
others, to process and describe horrific understanding of individual support, and
events and find some justice. Reliving our communication and other guidance not
experiences revives the trauma we and being followed. Families want to see changes
those who loved Danny still live with. Our Consequently, Danny could become to prevent further deaths but
family is incomplete without him. confused and anxious. His partial health
Some readers may be familiar with at funding related to his epilepsy, are largely powerless to
least part of Danny’s story or followed his communication and behaviour. achieve this as authorities are
inquest in 2018 (live tweeted by George Motivated staff work well with Danny but
Julian @TozerInquest). A profile of Danny were often criticised by others. (We began likely to close ranks
and a careful, extensive article by to wonder if some staff might find a way to
Katharine Quarmby about his death and create a situation where we would have to
its aftermath can be found on the Dying to move Danny if things did not improve.) The next day Danny deteriorated and, by
Matter website, which was launched on He was as fit as a fiddle apart from his the evening, he was declared brain dead.
the sixth anniversary of his death (see box epilepsy and had run a 10K race six weeks Three intensive care unit consultants
and end of the article). What follows is a previously. That morning, we assumed he concluded he had had a seizure and that,
relatively brief summary. had had a seizure. had he been found sooner and put in the
Having been a cheery toddler, Danny His tonic seizures had started 12 years recovery position, he would have been OK.
was diagnosed with autism when he was previously and occurred about once a As we hoped Danny could donate his
three and his learning disabilities became month, lasting around two minutes. One organs, one of the consultants spoke to
more apparent; he was losing speech by was due and his epilepsy support plan the coroner for permission. The coroner
the time he started school. told staff to be extra vigilant at that time asked him if we thought there had been
foul play.
Driving home, devastated, we said that
Dying to Matter: a quest to tell stories and gather evidence we did not think he had been murdered
but neglected.
Dying to Matter is a platform to It is in its early days and we aim to
remember the lives of people with bring on more families, investigative Red flags
learning disabilities and autistic people journalists, researchers, academics and Many will recognise the red flags apparent
who have died. others to help with this quest and tell in this account.
We are using investigative journalism more stories and gather more evidence. Indeed, after Danny died, we felt sure
and research to look into deaths of Primarily, we want a place to that at last our previous concerns of what
people with learning disabilities and remember people who have died and we had experienced at the house would
autistic people to better understand show that their lives matter. now be believed and action taken. We
what is happening and why people are  http://dyingtomatter.org.uk/ had not anticipated the inertia, lack of
dying prematurely. t @dyingtomatter responsibility and ignorance of their roles
by professionals in the agencies involved.

22 Vol 35 No 2 | Winter 2022 Community Living www.cl-initiatives.co.uk