Break down the wall of silence

Community Living

Alicia Wood

— Spring 2022

When healthy people die in their care, providers – and this includes charities and community support – should engage with families and apologise, says Alicia Wood.


Richard Handley, who died in supported living in the care of a not-for-profit organisations – Photo Sheila Handley




As it does with many readers, the death of Connor Sparrowhawk in 2013 will be forever imprinted on my mind.

I followed Connor’s mother, Sara Ryan, on Twitter at the time and watched in horror as she documented Connor’s worsening mental health, the family’s need for help from local services, his admission to an assessment and treatment unit (ATU) and his death from drowning in a bath after being there for 107 days.

Connor’s family’s refusal to accept that it was simply a tragic accident and their subsequent battle to seek truth and accountability opened my eyes to how institutions and those who work within them operate after a death.

Despite this realisation, in my thinking this was about the response of a faceless, careless and bureaucratic organisation – in this case, Southern Health.

I also followed the search for truth and justice by the family of Nico Reed after his death in the care of Southern Health not long before Connor’s death. The organisation’s denials and lack of accountability were breathtaking in both cases.


An independent report into deaths in Southern Health over a four-year period looked at 1,454 deaths in mental health services and, of those, 772 were unexpected deaths of people with learning disabilities. Fewer than 1% of all deaths of people with learning disabilities were investigated (Mazars, 2015).
When this report was published in December 2015, for the first time in my memory, the deaths of people with learning disabilities were being discussed on prime-time television.

I naively thought that things had to change for the better but, despite the media and political attention paid to such deaths in recent years, avoidable deaths of people with learning disabilities remain stubbornly high. They are still three times more likely to die a preventable death than the rest of the population.

I also naively thought this was just about institutional services. ATUs were the kind of services I was (and still am) working hard to eradicate in favour of local, person-centred support.

The approach I have been working on for years – supported living – is supposed to be about building everything around what an individual needs. It provides support in people’s own homes, close to families and friends.

How can organisations end up doing the sort of things they have vociferously campaigned against for many years?

I had always believed that this kind of community support would naturally protect people with learning disabilities from poor care.

Learning from Rosie Tozer (2021) about the death of her son Danny in September 2015 was a particularly eye-opening moment for me.

What she described as poor care, denial and a lack of accountability was not in this case coming from a large institutional provider but was about supported living from an organisation I’d long respected, Mencap.

Mencap is not only a care provider – it is the biggest and most influential learning disability charity in the UK. It facilitates the All-Party Parliamentary Group on Learning Disability and has the ear of politicians, policymakers and the media.

Mencap’s best and most effective campaign in my opinion was Death by Indifference (Mencap, 2021). It was the first to raise the issue of preventable deaths and question the value in which people with learning disabilities are held by health services and professionals.

Mencap, like many not-for-profit organisations who support people with learning disabilities, has done many good things, provides many good services and is an organisation that, rightly, has a place in the hearts of many people.

So how can organisations like this end up doing the sort of things they have vociferously campaigned against for many years? If young, healthy people die in their care, organisations with good values have an opportunity to understand how this situation has come about. Identifying how this can happen is key to finding out what is needed to prevent such deaths.

Richard Handley died in 2012 from constipation in the care of United Response, another not-for-profit support organisation.

He lived in a supported living arrangement and, like others who have died prematurely, suffered from a lack of care and rigour in his support that led him to die from something no one should die from in this day and age.

After the inquest, United Response set out how it changed as a result of his death (United Response, 2018). Southern Health commissioned a review into Connor’s death that found it was preventable (Verita, 2014).

Sadly, Mencap did not follow the basic course of action required when there is a question about a death in care but instead worked to reduce the scope of the inquest.

Interviewed by the BBC after the inquest, a Mencap representative, when asked “Are you proud of the service that has been described during the inquest?” replied “Yes” (BBC Breakfast, 2018).

In the same BBC report, Derek Lewis, the chair of Mencap, stated “the quality of care was of a very high standard”.

However, the Mencap York domiciliary care service, which included the home where Danny lived, was rated as requiring improvement in all areas in a Care Quality Commission inspection report published in March 2016 shortly after his death.

Mencap relied on the coroner’s verdict to determine their responsibility and action around his death, although the scope of the inquest had been limited at their request.

There is also a strong case that inquests in general do not take into account the wider issues surrounding deaths in care and rarely have a finding of neglect, even if it can be argued that the person who died was neglected.

Of course, Mencap is not alone in how it responded to such an incident. Being prosecuted is a fear for health and social care providers, even if in practice it rarely happens.

Don’t apologise, say lawyers

I have asked providers why they would not just put their hands up and say “we got it wrong” and apologise – the response was that their lawyers would not allow it.

Reputation, I’m sure, plays a big part in how health and care providers respond. Mencap has a lot at stake when it comes to reputation.

It described itself until recently as the “voice of learning disability” and admitting to getting things wrong can put that proclamation into question.

This was evident in the BBC questioning of the Mencap chair after Danny’s death, where it was pointed out that national disability charity Scope had decided to end all service provision because of precisely this conflict of interest between campaigning and service provision.

I would suggest that refusing to engage with accusations that cause reputational harm is one thing that harms reputations.

Most importantly, evasive behaviours and tactics can stop us from understanding what we need to do to prevent deaths of people with learning disabilities in the first place.

Dying to Matter is an initiative by journalist Katharine Quarmby and myself to unpick what happens surrounding an individual death in care, or an issue such as support for people with epilepsy that means people with learning disabilities are dying preventable deaths. It aims to hear a range of perspectives that help us understand more fully, and to move away from blame and towards understanding.

Our first investigation is into the death of Danny Tozer and the story so far can be found on the Dying to Matter website (Quarmby, 2021).

Good practice: your help is appreciated

Please get in touch if you can help Dying to Matter with these questions – we are keen to hear your stories and identify good practice.

Providers: What are you doing to listen to the concerns of the people you support and their families?

Providers and law practitioners: we would like to hear about how the issue of not apologising to families after a death can be resolved without fear of legal repercussions.

www.dyingtomatter.org.uk

I would say our main learning to date is that sometimes the truth of what happened will never be found. Varying accounts and poor memories mean getting to the bottom of what happened will not happen unless a key witness or witnesses come forward.

The Tozers said that their concerns about the quality of care were ignored, and this is a regular theme that comes up after a death in care. Simply listening to the concerns of families and acting on them will go a long way in preventing deaths, but that is easier said than done.

I had always believed that this kind of community support would naturally protect people from poor care

What are you doing in your organisation to listen to the concerns of the people you support and their families? Please tell us about it at Dying to Matter. We are keen to identify good practice.

Another issue is commissioners continuing to pay for poor care. In the past decade, we have watched local authority funding reduce and the good practice built up in commissioning under Valuing People decline.

Funding for social care has been massively problematic for providers and we cannot ignore the fact that this will contribute to poor care.

The culture of an organisation is central to how it works to prevent deaths and to how it responds after a person has died in their care.

Just looking through press statements after a death tells us a lot about the culture of the organisation.

“Mr and Mrs Tozer felt that at times Mencap fell short of the high standards which we set ourselves” (Mencap, 2018) can sound like a standard deflection of responsibility by an organisation after a death or serious injury.

It could make a huge difference if organisations just accepted that responsibility and said: “We fell short of the standards we set ourselves.”

The other lesson is that the importance of a genuine, heartfelt apology to the family when something goes wrong cannot be underestimated. Leaving a family in limbo until an apology comes – if it ever does – is cruel. We have got to find a way for organisations to be human in these difficult situations.
We’d like to hear from care providers and legal people on how this issue can be resolved legally. Does it really matter if an organisation is prosecuted for failures? Is holding back something so profoundly important as an apology worth it to avoid prosecution? Tell us your stories please.

Finally, we want Dying to Matter to be a place where families can share a memorial of their relative with a learning disability and we can celebrate their lives. Please send us details in the link on our website at http://dyingtomatter.org.uk/uncategorised/post-a-memorial.

References

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