Page 12 - Community Living Magazine 35-3

premature deaths

Break down the wall of silence

When healthy people die in their care, providers – and this have vociferously campaigned against for
includes charities and community support – should engage many years?
If young, healthy people die in their
with families and apologise, says Alicia Wood care, organisations with good values have

an opportunity to understand how this
situation has come about. Identifying how
s it does with many readers, the working hard to eradicate in favour of this can happen is key to finding out what
death of Connor Sparrowhawk in local, person-centred support. is needed to prevent such deaths.
A2013 will be forever imprinted on The approach I have been working on Richard Handley died in 2012 from
my mind. for years – supported living – is supposed constipation in the care of United
I followed Connor’s mother, Sara Ryan, to be about building everything around Response, another not-for-profit
on Twitter at the time and watched in what an individual needs. It provides support organisation.
horror as she documented Connor’s support in people’s own homes, close to He lived in a supported living
worsening mental health, the family’s families and friends. arrangement and, like others who have
need for help from local services, his died prematurely, suffered from a lack of
admission to an assessment and treatment care and rigour in his support that led him
unit (ATU) and his death from drowning in How can organisations end up to die from something no one should die
a bath after being there for 107 days. from in this day and age.
Connor’s family’s refusal to accept that doing the sort of things they After the inquest, United Response set
it was simply a tragic accident and their have vociferously campaigned out how it changed as a result of his death
subsequent battle to seek truth and against for many years? (United Response, 2018). Southern Health
accountability opened my eyes to how commissioned a review into Connor’s
institutions and those who work within death that found it was preventable
them operate after a death. (Verita, 2014).
Despite this realisation, in my thinking I had always believed that this kind of Sadly, Mencap did not follow the basic
this was about the response of a faceless, community support would naturally course of action required when there is a
careless and bureaucratic organisation – protect people with learning disabilities question about a death in care but instead
in this case, Southern Health. from poor care. worked to reduce the scope of the inquest.
I also followed the search for truth and Learning from Rosie Tozer (2021) about Interviewed by the BBC after the
justice by the family of Nico Reed after his the death of her son Danny in September inquest, a Mencap representative, when
death in the care of Southern Health not 2015 was a particularly eye-opening asked “Are you proud of the service that
long before Connor’s death. The moment for me. has been described during the inquest?”
organisation’s denials and lack of What she described as poor care, denial replied “Yes” (BBC Breakfast, 2018).
accountability were breathtaking in and a lack of accountability was not in this In the same BBC report, Derek Lewis,
both cases. case coming from a large institutional the chair of Mencap, stated “the quality
An independent report into deaths in provider but was about supported of care was of a very high standard”.
Southern Health over a four-year period living from an organisation I’d long
looked at 1,454 deaths in mental health respected, Mencap.
services and, of those, 772 were Mencap is not only a care provider – it
unexpected deaths of people with is the biggest and most influential learning
learning disabilities. Fewer than 1% of all disability charity in the UK. It facilitates
deaths of people with learning disabilities the All-Party Parliamentary Group on
were investigated (Mazars, 2015). Learning Disability and has the ear of
When this report was published in politicians, policymakers and the media.
December 2015, for the first time in my Mencap’s best and most effective
memory, the deaths of people with campaign in my opinion was Death by
learning disabilities were being discussed Indifference (Mencap, 2021). It was the
on prime-time television. first to raise the issue of preventable
I naively thought that things had to deaths and question the value in which
change for the better but, despite the people with learning disabilities are held
media and political attention paid to such by health services and professionals.
deaths in recent years, avoidable deaths Mencap, like many not-for-profit
of people with learning disabilities remain organisations who support people with
stubbornly high. They are still three times learning disabilities, has done many good
more likely to die a preventable death things, provides many good services and
than the rest of the population. is an organisation that, rightly, has a place
I also naively thought this was just in the hearts of many people.
about institutional services. ATUs were So how can organisations like this Richard Handley, who died in supported living Sheila Handley
the kind of services I was (and still am) end up doing the sort of things they in the care of a not-for-profit organisations

12 Vol 35 No 3 | Spring 2022 Community Living www.cl-initiatives.co.uk