Dying for a wank

This week the inquest into the death of Danny Tozer concluded in York.

The coroner found that Danny died as a result of an epileptic seizure that led to a cardiac event, that in turn starved his brain of oxygen. Danny’s death was classified as SUDEP – sudden unexplained death in epilepsy. The coroner found on the balance of probabilities Danny’s death was not caused by neglect [it seems impossibly hard to pass over the coronial neglect bar, see what happened at Richard Handley’s inquest for another example].

The Coroner found:

  • communication between Mencap [who provided his care], City of York Council [who paid for his care, with part funding from Vale of York CCG] and Danny’s parents was not satisfactory
  • a Deprivation of Liberty Safeguard had not been applied for, although he felt this did not contribute to Danny’s death
  • the Positive Behaviour Support plan that was in place was not followed by Mencap staff, and
  • it could not be ascertained when the Mencap carers returned to check on Danny but he felt it was likely to be shortly before the ambulance was called. This means that Danny was not checked for over half an hour on the morning of 21st September [his life support was turned off the following day].

So what does this all mean?

It means that the Coroner, the agent of the state appointed to make a decision, did not feel that he could attribute Danny’s death to neglect. I don’t think that this was a surprise for Danny’s family, or for those of us who have followed coronial processes into the deaths of learning disabled people. The Coroner acknowledged that we will never know what actually happened to Danny, at what stage his final seizure occurred, and it is my suggestion that it is reasonable to summarise that we will never actually know whether he could have been saved if he was found earlier during his seizure. We heard evidence from Dr Yates, one of the intensive care consultants who treated Danny to that effect. We’ll just never know.

I was surprised that the Coroner did not offer more analysis of the accounts that we heard in court. Before giving his determination he took one hour and seven minutes to summarise the evidence we’d heard over the fortnight, which just highlighted how confused the versions of what happened were. I am not for a second arguing in this post with what the Coroner found, it’s his judgement and that is what it is. What I’m going to do is just highlight a handful of the concerns, themes and issues that have arisen from the two weeks of evidence that we heard at Danny’s inquest.

1) Investigation and scrutiny [the complete lack of]

At the conclusion of the inquest, Gemma Vine, the Tozers’ solicitor commented in an Inquest press release:

Danny’s family have been failed numerous times by different organisations over the years not just in the lead up to Danny’s death but also following it. If it wasn’t for their tireless efforts in convincing the Council to commission an Independent Report and obtaining legal advice there wouldn’t have been an Inquest and the apparent failings identified during the evidence given at the inquest wouldn’t have been brought to light. This is a prime example of why families in this position should be granted Legal Aid without being means tested to ensure that they are properly represented from the very start

It wouldn’t be unreasonable to imagine that Mencap, the self styled leading charity and voice of learning disability, would have conducted an immediate, thorough investigation into Danny’s death. Instead it became clear to anyone following, that the organisation that published Death by Indifference over 11 years ago, had itself got a long way to go in how it sought to respond to deaths in its care.

When Danny died Mencap did not conduct any internal investigation. The home manager asked staff to write down a statement of what happened, which they did together [tip number one never ask people to work together to produce a narrative that accounts for what happened, ask them to write down their own recollections]. This statement was inconsistent and contradicted the evidence then given by witnesses in court. The evidence given by witnesses also contradicted that remembered by other witnesses. These contradictions sat alongside a collective amnesia from Mencap charity staff.

I can well imagine 2.5 years after someone has died the fine details may be lost to distant memory, whether your socks were black or blue that day, whether you had a fag break or a cuppa tea before checking on the person you were supporting, whether it was raining or just cloudy, that sort of thing. I can not imagine forgetting the fine details of what happened in quite the way that Mencap staff appeared to.

This lack of scrutiny extended far beyond Mencap too. The City of York, who commissioned and paid for Danny’s care [with some funding from health via Vale of York CCG] also failed to do any thorough investigation. An initial decision was made to investigate Danny’s death with a safeguarding investigation, this was overruled by someone further up the hierarchy, and a decision was made not to conduct a Section 44 Safeguarding Adults Review because their were no concerns about abuse or neglect.

Except of course there were, Danny’s parents had lots of concerns but no-one from CYC bothered to ask them about them. They also raised these concerns with the ICU consultant before agreeing for Danny’s organs to be donated (he went on to contribute to saving five lives), he in turn raised them with the Coroner [not the Coroner who oversaw Danny’s eventual inquest] and he also failed to give even the most perfunctory glance at Danny’s death. Learning disabled, nothing to see here.

Danny’s parents repeatedly raised concerns for the two years before his death, they raised concerns about neglect in the hours immediately before it, and they’ve raised concerns since. At their own cost, both emotional and financial. These have largely fallen on deaf ears.

In the media reports that have followed Danny’s inquest we’ve heard that there have been 85 unexpected deaths in Mencap care since 2010. That works out at about 10 a year, lets round it down and say two deaths every three months. Two deaths every three months. Given the evidence we’ve heard at Danny’s inquest I think there are serious questions to ask about what scrutiny those deaths have faced; what families have been told; whether there have been coronial inquests; how families concerns were included in investigations; and of course what can be learned from those deaths.

Mencap are all for calling on government/health care workers/educators to change their practice, but we currently don’t have any clarity around practice in their own provision.

2) Families under the spotlight / parent blaming

We repeatedly heard Mencap and CYC witnesses complaining that Danny’s parents, Rosie and Tim, had an issue with trust, an issue which it turns out was well founded given their son died, having not been checked on for half an hour. Not only that but:

  • Danny did not receive the care they were promised he would
  • he routinely missed activities because there were insufficient staff on duty
  • Danny’s parents, were not involved in the recruitment of staff to work with him as they’d been promised
  • they raised concerns about the supervision of Danny on numerous occasions
  • they had to commission the services of an external provider, Dimensions, to teach Mencap staff how best to communicate with Danny and support someone with autism.

Is it any wonder that they may not have trusted Mencap, or CYC, or anyone else for that matter?

Witness after witness after witness talked about ‘knowing the Tozers’ and their involvement with various council initiatives, like the Valuing People Partnership Board. Rosie and Tim were clearly loving and involved parents, who knew Danny better than anyone and wanted to offer their support to those looking after him. They were also experienced parents of disabled children, another son Sam had lived with severe disabilities and died a number of years previously. They had a wealth of expertise, professional and personal, that they freely offered. None of this should matter of course, it should be irrelevant to how their son was treated, but it is galling when so much was offered and spurned.

Throughout the inquest the Mencap brief, Joseph O’Brien, repeatedly attempted to paint The Tozers as difficult, as (unreasonably) untrusting, as having poor communication and unrealistic expectations:

On other occasions Mr O’Brien’s attempted to suggest Rosie and Tim weren’t really bothered with the quality of care at the time, note the use of the word abandon and the attempts to cast doubt on what Tim is saying, by questioning when Danny’s sister Rowena, was due to return to the UK:

Mr O’Brien also returned to the parent blaming when questioning one of Danny’s social workers:

Did Mr and Mrs Tozer specifically mention concerns about epilepsy?

If they had do you think you’d have remembered?

This is a barrister instructed by Mencap, the leading voice of learning disability, choosing to try and blame bereaved parents for the death of their son. It goes without saying that cross examination by Ben McCormack for Danny’s family clearly indicated that these discussions had taken place and Ros Aked had been involved.

So this line of questioning by Mencap is baseless, just pure and simple parent blaming. By Mencap.

3) Trust 

Related to the last two points, there appeared to be a peculiar approach to trust that played out at Danny’s inquest. It’s like scrutiny, or indeed audit, or any sort of quality assurance was a dirty word. Instead relationships within and between Mencap and CYC were built on ‘trust’, read another way they were highly reliant on apathy and indifference.

That’s Ros Aked, social worker at CYC ‘taking it on trust‘ that Danny was receiving the hours he was entitled to, despite repeated concerns raised by his parents that this was not happening.

Ros Aked said the she thought the issues were being dealt with – no explanation as to how, or by who. We can be absolutely certain that concerns were being raised. We heard very little evidence that any of them were addressed by CYC staff.

Then we have Rachael Drammeh, the manager of the Maple Avenue, the supported living house where Danny lived ‘trusting‘ staff to follow the plans that were in place. No audit, scrutiny or oversight. We know the coroner found that the staff did not follow the plans.

There was also the incident where Rosie and Tim raised with City of York Council staff the concerns raised by a Mencap whisteblower. This was another occasion where unbelievably CYC staff just ‘trusted‘ Mencap to deal with the matter. If you click on the tweet below you can see the whole thread relating to that. It starts:

and ends:

There are other examples if you’d care to dive into the @TozerInquest tweets, but I’ll move on.

4) Dignity and risk, or dying to have a wank

By the end of Day One of Danny’s inquest it was crystal clear that the primary argument Mencap were going to try and make was that they were respecting Danny’s feelings and wishes and considerate staff were giving him space to masturbate in the morning. What this argument attempts to gloss over was the duty of care to Danny that those same staff still held, that they failed to follow care plans or provide the agreed care, or that being given time/support to masturbate should be as routine as being given time/support to brush your teeth.

Mencap’s brief Mr O’Brien attempted to suggest that Danny was some sort of sexual deviant, repeatedly focusing on ‘private time’:

Perhaps the oddest of all of Mr O’Brien’s questions, and there were a few, was ‘Do you accept Danny would enjoy his private time‘ to which Tim has been kicking himself ever since he didn’t reply ‘Well don’t you Mr O’Brien?‘.

This obscene level of questioning of a bereaved father about his son’s masturbation (actually highly irrelevant to the failings of the Mencap staff that counsel represented) culminated in Mr O’Brien asking Danny’s father if he’d agreed to staff not interrupting his son. Tim calmly explained what the issue was, Mencap’s staff discomfort, not Danny’s behaviour:

Next Mr O’Brien quizzed Rosie. I remember being told several years ago that etiquette dictates that you rarely cross-examine a bereaved family member at an inquest, unless it’s of critical importance, yet here we were with Mencap’s barrister quizzing not one, but two bereaved family members about their son’s masturbation:

He continues:

and continues, with a side helping of parent blaming:

After that Mr O’Brien decided to quiz Rosie on whether they followed the morning routine at home. It became clear through the inquest that Danny’s parents had to take him home more often than had previously arranged due to their concerns with staffing levels provided by Mencap, especially at the weekends. The coroner found that the Mencap staff didn’t follow the agreed routine on the day Danny died, but the Mencap brief had to just double check his parents had followed it [my mind remains completely blown apart by this behaviour]:

Mr O’Brien didn’t stop there, he then attempted to cast doubt on Rosie’s account and somehow infer she had a problem with Danny masturbating:

A quick scan of the tweets showed Mr O’Brien asked at least eight witnesses about Danny’s private time, eight. Not only did he ask them about it, he also expressed irritation when the views they offered did not chime with his.

For example, Emmett Smyth who had been commissioned by Danny’s parents to teach Mencap staff to learn how to support Danny and to develop the Positive Behaviour Support Plan wasn’t wholly supportive of Mr O’Brien’s suggestion that private time would be of ‘enorrrrrmous benefit‘ to Danny. So he closed him down:

I am still surprised that Mencap felt it appropriate to take this line of questioning. I’m rarely shocked by how poor they are, but this was a new low even for them.

We heard so much evidence about a lack of person centred care for Danny, poor understanding of him and his needs, staff shortages that meant he had to miss out on activities he loved. In the media coverage that followed John Cowman, Director of Services for Mencap who had sat in court throughout the inquest, told BBC Breakfast that he was proud of what he’d heard. Proud.

I’m going to finish with two things, the first is a statement from some of the members of Learning Disability England about what they think should happen next. I agree with everything they say:

I’ll give the final word to Rosie and Tim, with thanks to Channel 5 for continuing to shine a light on the deaths of learning disabled people:

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