Danny’s inquest began this week. Three weeks ago we set off on the #CaminoLB. His parents Rosie (second left) and Tim (second right) joined us for the first few days. (Rosie’s account of what happened before and after Danny’s death can be read here.) Much talk and reflection about the inquest as we carried the red teapot in Danny’s memory.
We hoped, we seriously (naively) hoped and kind of convinced ourselves that Mencap would do the right thing. Given the transparency generated by George Julian’s live tweeting and Mencap’s self proclaimed status as ‘the voice of learning disability’ we thought they’d pitch up and park the dirty tricks bag that too commonly appears at inquests.
A few initial thoughts here (in no particular order).
A clusterfuck of fuckwad proportions.
Natural cause of death
Danny died of natural causes. Apparently. According to the Coroner’s office. There would be no post-mortem, inquest, scrutiny.
People assume unexpected deaths always involve inquests. Not always. Learning disability is a kind of ‘get out of jail’ natural cause of death card.
This is Rosie and Tim’s fight to gain accountability and answers about the death of their beyond loved son.
Erasure of house mates
Staff trauma was raised by the Mencap barrister ‘without wanting to detract from the family’s trauma’. The distress of the four other housemates present that morning was erased. One witness talked of going to put ‘bags on wheelchairs’ while the ambulance was called. A grotesque and graphic illustration of the non-personhood of people who should be the focus.
Blaming the parents
Mencap couldn’t help themselves. There has been no acknowledgement of Danny’s death this week. No kindness, empathy or apparent reflection. The Mencap barrister brutally cross-examined Tim and Rosie on the first day. Did they complain? Did they complain enough? Why didn’t they make their concerns more apparent? Why and why not?
Hints of ‘difficult parents’ dripped into evidence.
They answered each question carefully and with dignity. At one point Rosie said she’d brought a scrapbook of Danny’s life that she hoped the coroner and others would look at. The contrast of this simple act of love and humanity with the barrister’s questioning was almost unbearable.
Much discussion and questions related to ‘private time’. Mencap contributions by staff witnesses and/or their barrister focused obsessively on Danny’s morning wank. This relentless and dehumanising focus seemed to be aimed at absolving Mencap of responsibility for Danny’s death. He was not to be disturbed or interrupted during ‘private time‘.
The sensor mat
The sensor mat. The epilepsy bed sensor mat translated into ‘no need for observation’. Niggles about the sensor mat tumbled out almost by accident during confused and often incoherent evidence.
The mat worked.
The alarm went off during ‘private time’. It disturbed the whole house. It was definitely working. It was tweaked and replaced a few months before Danny died. A reference to mat ‘settings’ hastily retracted. The mat had a coloured light – blue, red or green – depending on who was giving evidence. It definitely worked. It was checked every night.
Except it didn’t work. Whispers emerged suggesting it was turned off during ‘private time’.
Staff members tried to simulate seizures in Danny’s bed. Grotesque, unfathomable action. Unrecorded. Anecdotal.
The mat worked. It didn’t. Nobody really cared at the time of Danny’s death. It was natural causes. No one from the front line staff to local, middle or senior management gave a flying fuck. Danny died of natural causes.
There was a strong sense (similar to LB’s inquest) that Danny didn’t have ‘proper’ epilepsy. Just a fake, learning disabled type version. A bizarre and incomprehensible position sustained after both Danny, LB (and others) died. I don’t have words for this. Just tears.
Family barrister, Ben McCormack, consistently and carefully raised epilepsy awareness among staff witnesses. He returned to the point that staff knew they should time Danny’s seizures and call an ambulance after five minutes. The observation levels described fell far short of this. His efforts fell on stony and unmoving ground both among front line and more senior staff. An almost pride in epilepsy unawareness played out in court
Descriptions of the number of staff, ‘residents’ and the sums underpinning ‘sleeping’, ‘waking ‘hours and 1:1 hours was like looking at my crochet chair of tangled wool, half crocheted squares, knots, mistakes and more. Without the colour.
Reported allocations (one house mate had 24 hours 1:1 cover while the rest seemed to have a range of 1:1 and general hours) seeped and steeped into an amorphous mass of incoherence. A nasty mix of double counting and ‘sharing hours’.
The Tozers took Danny home when they felt there weren’t enough staff on duty. A shortage treated with short thrift by one staff member. Danny’s activities highlighted as problematic. The ‘voice of learning disability’ seriously rocked the impoverished life model of supported non-living this week.
Staff provided a pretty much consistent and desolate picture of disinterest, dismissal and casualness. “I can’t remember” a much repeated response. More senior staff members used an almost more baffling “I believe…” for questions they should have known the answers to.
There was no apparent preparation, no reading reports, checking notes, minutes, care or reflection. It was as if Mencap staff were beaten and stripped of any humanity. A bleak, cold and callous picture of disregard.
I hope Rosie, Tim and family are ok tonight. Their determination to get justice for Danny has already thrown up a shedload of questions, concerns and horrors that should be grasped and shaken by those who should until we no longer accept the shite that permeates ‘learning disability’ care.
I’m just not sure who ‘those who should’ are any more.
Those who should are those who are paid, commission, claim to care, supposed to be involved/but were not really involved and have to be now.
What has been unearthed has to be analysed.
Mencap is a politically incorrect name (mental handicap shortened, handicap meaning ‘cap in hand’) and often Mencap employees look well fed and looked after – they are the ones receiving the care. What a trick.
“I’m sure who ‘Those who should’ are any more. Says it all really.
Mencap – is a Charity and a business; it wrings huge amounts of cash out of compassionate people using images of our vulnerable sons and daughters. They do this under the banner of their Charitable role, purpose and Values.
Mencap sells both Services and Values – to LA and NHS commissioners. The Commissioners buy Care – and caring – S/service at agreed cost based on these promises…from Mencap..
Public commissioners – (all using the bank of our money) will have penalty clauses written into their Capital contracts – with penalties for failure to deliver.
A glossy brochure that states – ‘we always deliver late and build wonky walls that sometimes fall down on people’; won’t win a contract. Nor will a ‘we put ’em to bed at 6pm whether they want to or not..and we cant always keep ’em safe’,.won’t attract even the most incompetent or stingy Public customer,.
Surely Mencap and their Public customers (who have Statutory responsibilities to us and ours) are both culpable, when the agreed S/service contract is broken.
When a Public Capital funded contract is broken – does not come in on cost – or within time – or provides wonky walls – you bet’cha justice – is sought.
Why are LA’s and NHS commisioners not suing Mencap et al – for failure to deliver these values based S/service contracts – when our son or daughter is neglected, hurt or dies – in their care?
Plenty of CQC and other evidence of same, to support their suit.
Oh and Mencap can I have the pounds back that I have put in your collection tins – in the tins that dont do what they say…….
Apalling! Supported living providers must be accountable for the hours they are paid to “support” people. Is there a refund or are the hours banked? I frequently bought my daughter hone from a Dimensions service as a result of staff shortages or use of Agency staff both were not trained in epilepsy. Their attitude was appalling having tragically lost one resident to apparent SUDEP I hoped there would ave been more training and awareness but no it was a shambles. As long as providers continue to claim they listen to parents and families and provide poor guidelines and care plans we have no hope of protecting our loved ones. There is good training available rescue medication and excellent monitoring facilities. Providers spend huge amounts of money on websites and training managers etc to defend their actions. More needs to be done to employ and invest in carers who are competent free to question and feel valued. A lot of good people out there want to work with us but it’s sometimes not a good environment. CEOs and managers suited and booted smart cars and a lot to say about disability they are listened to by MP’s Commissioners LDE etc press reports about improvements glossy mags and conferences to back up their claims. Yet still they continue to fail the people they claim to support.
I am scared shitless of placing my son into care. Although I know it will happen one day, and maybe sooner than I want it to be, because I am weary, tired and spent with no light at the end of this awful awful tunnel.
The Mencap barrister was arguing that the parents did not complain enough. He obviously has never ever been up against the ‘wall of silence’ when questioning the level of care being given to a loved one. Stand in the parents shoes before he takes that line of questioning.
I agree with all you say here Pauline.
Our lives have been reduceduced for over a decade by incompetence -and poorly managed cuts in LA budgets. Less money has not on its own, inflcted the years of suffering families have had to endure.
-setting up inhouse care companies to attract paying custom – which lost huge amounts of money when they failed. Which saw vulnerable local people tipped out of day support to fester at home – or become isolated and ill in ‘supported’ living.
– Short term gains. Removing social work. Filling social worker vacancies with short term locum care managers – making unqualified care assistant roles into care manager with role remit – cut support. Harsh and distancing – and or pretty useless. No status, or influence – or cover offered by the local team for these roles.. No relationship built with family or vulnerable son;s/daughter’s. Most treated the short tenure role as ‘just a job’….Leaving families to sink further and further from lack ofSW support, and vulnerable isolated people to get lonely and sick….
– contracting care agencies on cheapest cost alone. Often marvellous support worker – starts and then leaves from lack of pay etc. Worse workers – plain dangerous.
– Grasping a fruitless tug of war with NHS, on whose responibility it is to help vulnerable person access health care. Rather that sitting down as accountable Leaders – and working this issue through, sensibly..
– No social worksupport – erratic agency support – recurring crises – face less and feelingless Public Organisation- complaints and fears run round the block endlessly, Yet another bleak search for a legal aided solicitor – all has gone on for years and years.
So much wasted Public cash wasted through bad or nil decisions – so much energy, exhaustion and wasted life and happinesses by ageing family and increasingly disabled son or daughter.
I told a LA leader recently- we famlies of very vulnerable sons and daughters push a heavy cart loaded with boulders uphill everyday – we take one off – and the people paid to help us……. put two… back on…
….the most heavy responsibility – when all care duties were handed by LA to an agency – was allocated to us; that is the role of sole monitors of my sons care. Only care cost and contract monitored by LA. We, aged or not, parents of sons and daughters in ‘supported living’, do not have Statutory Duties…or responsibilities..
Re: Danny, where the term – ‘monitoring’ – is repeatedly used by LA..
What was monitored – by whom monitored, how monitored, when monitored – how often monitored?. Actions out of – and detailed evidence in writing of all five… recorded at the time…please?.
Agree! Service Providers are often busy cosying up to government, charities etc winning useless awards and telling us how wonderful they are but they stroll can’t get the job right.
They are in the perfect position to say how it really is for our guys and reallly make a distance but instead take the opportunity to shine the spotlight on how wonderful they are! Many Service Providers are too big and out of touch with the people they claim to support in my opinion.
Complaining just gets you a name for trouble maker. Dimensions dirty tricks to silence me and break me were unbelievable. The managers tried everything to disgrace me what a shower! I was the only parent made to sign in and out ofvmy daughters home and I was forced to ask three other residents if I could come into her shared house. This provider puts another story forward however my family and daughters PA’s witnessed the unbelievable truth.
well said, Pauline……
My experience of Rethink wasn’t a great deal better. My son, who had epilepsy as well as many other physical and mental health disabilities, died an avoidable death. We were told if his flat wasn’t emptied with in the month someone would have to pay the next month rent. The ‘someone’ was very firmly directed at me. There was no 24 hour care for an epileptic; no watch for someone who had tried to commit suicide several times.
I was so stunned from the death, it took me sometime to remember that as an adult, I was not responsible for my son’s bill. He was on their care…….
Rethink also have a bereavement service but we were not allowed to access it as we might be on the ‘other’ side.
How do I know it was an avoidable death, PHSO said it was, but didn’t investigate. In fact there has never been an investigation into a sudden and unexpected death.
Another big business ‘charity’.
You’re ‘responsible’ when others want you to be. How bad this all is. It’s so obviously a pretence of care, cashing in from draining a life.
And your son paid with his life.
Weary mother and Pauline say it like it is.
All this talk of ‘special needs’. It’s those who love who meet them. It takes devotion to meet needs, not rogue organisations. LAs are made of ordinary people.
Have been reading the shameful story of the Mencap house and Danny’s death. I fell out with our local Mencap (Southampton) due to their poor, unsafe activities in junior gateway and ever since have referred to them as Mencrap.
Service providers will be keen to exonerate their services at all costs for those who have had appalling experiences from them will continue to express our views! Sadly “they” have been listened to above parents for far too long. Acknowledging “not always getting it right” or “we will learn from these mistakes”has cost misery and lives! Care and humanity should be at he centre if their work and yet when challenged they play the blame game. Time to get rid of their glossy brochures and websites showing a select few and their successes! Stop pandering to the government roll your sleeves up and get on with the job and start caring really listening to families and keeping our children and adults safe and happy.
Whilst inderstanding that the coroner has a narrow legal corridor and low base line – within which to consider the evidence, (such as it was) on Danny’s death and his last years, his finding ”no neglect” was not a surprise. However would it not have been – JUST, lovely. if he could have concluded ”;however I would want a great deal better life than that for a son or daughter of mine”.
Exactly Weary Mother
What sort of lives do our loved ones have to look forward to?
My son has had people in his life that have enhanced it. Teachers, day centre assistants, nurses, volunteers who have taken him on holiday and our lovely local mencap, (not Royal Mencap who are too busy building their empire to enhance the lives of people they purport to represent). They have all enriched his life and gave it purpose He was nice to be around. He was compliant. He enjoyed their company.
Not any more. He is medicated for it, but it is not working. He will not endear himself to anyone anymore so what sort of life will he expect to have when he eventually has to go into care. Will they write in his care plan ‘be kind to him’. Will they do that? Does anyone read the care plans?I have my doubts.
There are people who are now in our lives who are trying to help. They are kind and I hope they succeed. It is a difficult task especially has a lot of the activities he once enjoyed no longer exists. They are professionals but at the end of the day they have to eventually hand the baton to someone else. I have just got to pray that the people they hand it to do not drop it.
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