Who would have thought inquests would be part of the vocabulary of parents with children with learning difficulties? The same vocabulary that has already been expanded to encompass a raft of meaningless titles, plans, initiatives, slogans and campaigns. Designed in the absence, all too often, of support, to make us believe that our children have a right to a fulfilled life, that they will be treated as equals and that they will be cared for and kept safe.
As our children with additional needs grow into adults with additional needs parents are chastised for being over protective, for making decisions for them and for interfering with their lives. All the experience we have built up over the years, all the knowledge, the love and care is pushed out of the picture as practitioners move to a position of power. Our voices become silent echoes in our heads.
My lovely daughter has epilepsy. So this means I have 24 years experience of epilepsy. I am an expert on her epilepsy. I know this as much as I know anything. That does not necessarily mean she will not die of SUDEP ( which seems to be a bit of a catch all and little understood phrase for the unexpected deaths of people with epilepsy).
It does mean, however, that I will take all the steps I can to keep her safe. It does mean we have an epilepsy plan. It does mean we have emergency protocols that we follow. It does mean when it was suggested we have a sensor mat instead of a night carer I said no and when I was trying out a residential school with her and they turned down the night monitoring system because she was snoring I walked away, and when a hospice said they couldn’t check on her more than every half hour but they would leave her door open by the nurses station, then put her in a room down the corridor we didn’t go back.
So when I am reading the live tweets of the inquest into the death of 36-year-old Danny Tozer it brings up some pretty strong feelings. I see two loving parents having to challenge the home where he was living, questioning if they checked on him every 10 minutes and whether they were providing adequate supervision as agreed in his epilepsy plan.
When the people they are challenging are Mencap it is no longer just disturbing – it is astonishing. Some years ago I went to see a possible ‘college’ for my daughter. It had just been set up by a small independent provider. I was so appalled by what I saw, a class where the sensory experience was passing around a plastic bag containing cold takeaway, young people with gastrostomies and broken pumps, no overhead hoists for children in wheelchairs, children unable to sit unaided sliding sideways from broken wheelchairs and a young man with autism left in an empty classroom while a member of staff dismissed him, It’s only Alex, he said.
I cried when I left. Then I came home and called Mencap. I wanted help, an inspection, a visit, even just a phone call. I toured the switchboard but no one could help. It was not on their patch they explained. They didn’t work in that borough. No, sorry, they couldn’t help. My pleas fell on deaf ears. They suggested I called the local authority. I did. And I suspected then that this was not a charity for people like me or my family, for all their PR and promotion.
Parents today do not know which way to turn. We have lost our voice. We are scared to speak for our children in case we offend the many people with disabilities who can speak for themselves. We are scared to complain in case what we have is taken away or a worse option is given as an alternative. We are scared to ask for more assistance when we know there is so little to go round.
We understand that our young people are adults, that they need space to breathe – but we also know that what keeps them safe is us and that no-one cares about them like we do. I have often said that I can keep doing what I do until I get to retirement age. But I realise, like the Tozers, there will be no stepping back.
At the Tozer inquest we heard that Danny had epilepsy and like any epilepsy it was unpredictable so Danny had a plan that said he needed ten minute checks. In Danny’s plan it should not have had to say that Danny also needed kindness and care, but it took an independent consultant – paid for by Danny’s parents – to point this out to staff. It didn’t say that when staff shortages meant Danny couldn’t do the things he loved that his parents had to step in. And again when the same staff shortages made Danny unsafe that they had to pick him up and take him home, but they did anyway. The same parents that tried again and again and again to make things work were the same parents who were blamed for not doing enough and the very same parents who made Danny’s life worth living.
It is a bleak day for all of us when support workers have to be taught to be kind, to build rapport. It is a bleak day when epilepsy is so misunderstood that an epilepsy plan is not followed to the letter. It is a bleak day when the parents of a 36 year old man, with 36 years of accumulated knowledge and wisdom, are sharing that knowledge and wisdom at an inquest examining the premature death of their son. It is a bleak day when their adversary is a leading charity that positions itself as the voice of people with learning difficulties and their families. It is bleak day when it takes an inquest to uncover mistakes, everyday sloppiness and establish accountability in a system littered with people who could have done better.
I have made mistakes along the way as a parent of child with special needs. I have learnt things the hard way. I have faced my own failings and I know they may come again. But I have learnt from my mistakes, I have admitted my mistakes, I have learnt from the good people around and I will continue, I hope, to learn. That is all that we can hope, to do our best, to share knowledge, to be humble and to learn. If this approach had been taken by Mencap and it’s staff when Danny was alive would an inquest have ever been needed?
I have learned lessons from the Inquest of Danny Tozer. There is much to do, to keep on doing, to keep on fighting and shouting and raising our voices to keep our loved ones safe. Just as I wish that inquest was no longer part of the vocabulary of my world I would like to thank Rosie and Tim Tozer for having the courage and strength to pursue justice at an inquest so the rest of us can be reminded why it is worth fighting. And I hope that when all the witnesses at the inquest reflect on what they cannot now remember they will wonder as one good parent did last night, What more could I have done when Danny was alive?