Danny Tozer “was not given a chance to survive when out of sight or sound”
Our son Danny was just 36 when he died unexpectedly in September 2015 following an epileptic seizure at a supported living house run by Mencap. He could not ask for help when he felt unwell that morning and did not want to get up.
Sad indeed, but why is this still of interest after all this time? Have his parents not yet come to terms with his death and found “closure”?
I have wondered how to put into words here what happened, when we have already written thousands for ourselves, lawyers, coroners, ombudsmen and others, to process and describe horrific events and find some justice. Reliving our experiences revives the trauma we and those who loved Danny still live with. Our family is incomplete without him.
Some readers may be familiar with at least part of Danny’s story or followed his inquest in 2018 (live tweeted by George Julian @TozerInquest). A profile of Danny and a careful, extensive article by Katharine Quarmby about his death and its aftermath can be found on the Dying to Matter website, which was launched on the sixth anniversary of his death (see box and end of the article). What follows is a relatively brief summary.
Having been a cheery toddler, Danny was diagnosed with autism when he was three and his learning disabilities became more apparent; he was losing speech by the time he started school.
In adulthood, Danny was full of life and fun and a people person, enjoying pubs, clubs and cafes, playing his piano, outdoor activities and drinking lots of tea.
The phone call
When we had a phone call one morning saying “you’d better get here quick – he’s in cardiac arrest”, we were shocked but not surprised.
Our lack of surprise followed two years of concern for Danny’s wellbeing in his placement. Common problems we raised included staff shortages and inconsistent approaches, low expectations and understanding of individual support, and communication and other guidance not being followed.
Consequently, Danny could become confused and anxious. His partial health funding related to his epilepsy, communication and behaviour.
Motivated staff work well with Danny but were often criticised by others. (We began to wonder if some staff might find a way to create a situation where we would have to move Danny if things did not improve.)
He was as fit as a fiddle apart from his epilepsy and had run a 10K race six weeks previously. That morning, we assumed he had had a seizure.
His tonic seizures had started 12 years previously and occurred about once a month, lasting around two minutes. One was due and his epilepsy support plan told staff to be extra vigilant at that time and to call an ambulance if he was still having a seizure after five minutes. The month before, in a minuted meeting, we had emphasised that, when behind a closed door, he should be checked constantly in case he fell.
We arrived at the hospital to be told by the house manager that he had been left for 30 minutes in his bedroom then found unresponsive. The paramedics restarted his heart but the house had no defibrillator. “What for?” was the response.
Later, we found out that Danny had been sent to hospital by ambulance unaccompanied. The consultant reported that Mencap staff did not believe he had had a seizure. His seizure mat had not alarmed – we had seen it unplugged or not working on visits. The house manager tested it on arriving at the house as Danny was leaving and it had failed to function.
The next day Danny deteriorated and, by the evening, he was declared brain dead. Three intensive care unit consultants concluded he had had a seizure and that, had he been found sooner and put in the recovery position, he would have been OK.
Families want to see changes to prevent further deaths but are largely powerless to achieve this as authorities are likely to close ranks
As we hoped Danny could donate his organs, one of the consultants spoke to the coroner for permission. The coroner asked him if we thought there had been foul play.
Driving home, devastated, we said that we did not think he had been murdered but neglected.
Red flags
Many will recognise the red flags apparent in this account.
Indeed, after Danny died, we felt sure that at last our previous concerns of what we had experienced at the house would now be believed and action taken. We had not anticipated the inertia, lack of responsibility and ignorance of their roles by professionals in the agencies involved.
Within a week, a safeguarding review had been opened and closed without our knowledge. We have never had an explanation why a safeguarding review was not undertaken by the York Safeguarding Adults Board in line with the Care Act 2014.
After Danny’s death, we sought legal advice and it took two years to get an inquest opened. If Danny’s case had fallen under the deprivation of liberty safeguards – it was confirmed he would have qualified – this would have happened automatically.
We were refused legal aid although all public bodies have their costs met by public funds. The Care Quality Commission (CQC) soon inspected some Mencap houses including Danny’s and found “requires improvement in all areas” for Mencap’s entire domiciliary care service in the area.
Having taken over the Health and Safety Executive role, the CQC investigated over nine months whether Mencap should be charged with manslaughter, without contacting us or City of York Council.
It concluded that, as it was not known when Danny had a seizure, he might not have survived anyway. This seemed illogical to us and, crucially in our opinion, Danny was not given a chance to survive when out of sight or sound.
After nine months, the council commissioned a management review, which found failings by the council and Mencap and that Danny “should not have been left as long as he was” – although the reviewer never visited the house.
Following this, the council apologised and said it could have done things better, agreed that the placement was unsuitable and wrote a “DT action plan” – reducing his identity to initials.
Mencap did not undertake an internal inquiry until two years after Danny’s death; the family was unaware of this and it was not presented at the inquest six months later. It suggested that the family’s expectations of the placement were unrealistic and staff did not engage with us for fear of confrontation.
An article 2 (right to life) inquest was held in April 2018. The City of York Council and Mencap staff who gave evidence seemed to have little recollection of much of what had happened and portrayed their practice as entirely acceptable.
The coroner concluded in one sentence that Danny had died from natural causes and said that it would have been too difficult to keep him safe.
He did comment that communication between the council, Mencap and the family was not satisfactory.
To our surprise – and to the surprise of other parties involved and legal and social care commentators – neither neglect nor any other failings were mentioned.
Chance lost for a positive legacy
So why is it important that the deaths of Danny and others with learning disabilities in similar circumstances are known about?
We know that people with learning disabilities die, on average, 20 years younger than their peers and these figures have not improved in recent years (LeDeR, 2020). Only half of those with autism, learning disabilities and epilepsy reach their 40th birthday (Autistica, 2016).
Bereaved families often want to see positive changes in services that could prevent further deaths – a legacy from a senseless event. But they are largely powerless to achieve this as authorities are likely to close ranks to preserve their reputations and the status quo, so positive change is not achieved.
Families are frequently isolated and unsupported at this time, confused about what should happen after their relative’s death, which authorities can prefer to present as a one-off – a blip in the system rather than the ultimate consequence of a closed culture.
Sadly, families are often perceived as an irritant before and after a premature death, and discouraged from demanding answers to why it has occurred. Once we were offered a patronising hug instead of answers to our questions.
By chance, we did find support and advice from people associated with the Justice for LB campaign. Initiatives such as Dying to Matter could provide a supportive network between families and evidence of similar issues that arise from care-related deaths to bolster campaigning.
Sadly, families are often perceived as an irritant before and after a premature death, and discouraged from demanding answers
For us, the lack of change in local services has been hugely disappointing. The coronial verdict meant that any impetus to improve among agencies was lost.
There is no evidence that people in York with Danny’s profile now have robust epilepsy plans monitored and reviewed. Mencap has never initiated any contact with us since Danny’s death or inquest and the current chief executive has said that she cannot comment on anything that happened before she was in post.
We are all aware of the discriminatory attitudes to the lives of disabled people that pervade our society and even the structures designed to support them to reach their potential.
If independent advocacy is not available, then frequently only the diligence of families can ensure the safety and wellbeing of their relative, and often filling in gaps in provision. This has become sharply apparent in recent times with cuts to services and Covid restrictions.
But we must not forget the deaths that preceded or have happened alongside the pandemic. Aside from financial resources, inclusive attitudes and caring, constructive approaches are paramount while we await and campaign for societal and legal change.
Danny Tozer: a Preventable Death? by Katharine Quarmby can be read at http://dyingtomatter.org.uk/deaths-in-care/danny-tozer-a-preventable-death/
In the next issue, Alicia Wood and Katharine Quarmby, who launched Dying to Matter, will discuss the ongoing implications of Danny Tozer’s death, and how preventable deaths can become a thing of the past
References
Autistica (2016) Personal Tragedies, Public Crisis. The Urgent Need for a National Response to Early Death in Autism. https://tinyurl.com/2p8b5erk
Learning Disabilities Mortality Review (LeDer) Programme (2020) Annual Report 2020. https://tinyurl.com/yvvspcur
