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interview

autism and no learning disability, so doing around learning from deaths
it is a very significant issue.” might be one of the places where
However, he promises no more than we get some evidence to help us
“careful thought with people”. prioritise,” he says.
He would like to test some James says he has “already
alternative approaches: “What if we influenced the national programme
didn’t spend any money on a bed of work around sepsis to ensure that
– what would we spend the money it is more sensitive and thoughtful
on? What if we were to invest about sepsis in people with a
earlier in parents – what might that learning disability”.
look like?” Soon after the interview, the
He considers a future in which LeDeR Mortality Review was
parents, carers, support workers and published, showing sepsis to be a
teachers are all trained in PBS and significant cause of death.
support is much more consistent. One challenge for James is that he
Making plans requires accurate leads a national programme which is
data. However, James notes that delivered in 152 local areas. He says
there is some conflict between the it offers “a blend of high support
Assuring Transformation data and and, where needed, high challenge”.
mental health data, both of which Local decisions should be made
are produced by NHS England. locally, he believes. Nevertheless, he
“We are working at trying to feels that he has the influence and
improve the quality and consistency authority he needs.
of that data,” he says, adding that He describes a health organisation
there has been some “helpful he visited which, after hearing the
constructive challenge” from others, issues that he raised, decided that
including Chris Hatton, professor of “changes in leadership roles” were
public health and disability at needed.
Lancaster University. Ray James: “There has been a 16% reduction in inpatients in Since the publication of the LeDeR
The data is not as consistent and three years but there is still much to be done” Mortality Review, the challenges for
certain as he would like but “it is James have, if anything, increased.
what it is”. Instead of spending energy learning disabilities: “Do you think he There is a sense of shock within the
defending it, he says, “I’d rather be would rather be dead?” learning disability world at the worsening
talking to different stakeholders about James’ face shows distaste. “I find that life expectancy for people with learning
what we do differently to improve abhorrent is the first thing to say. my disabilities and there has been some
people’s lives”. learning from this is actually that it is (albeit limited) coverage in the wider
Transforming Care is due to end in experts by experience who tend to be the media. Learning Disability England has
march 2019. James says he wants people people who change hearts and minds in called for a mortality review board to be
to feel confident that “people with a this space. set up.
learning disability or autism or both will “If you are doing training about learning
remain a priority for the NHS”. disability awareness, have you got
Transforming Care brought in care and someone with a learning disability “ If you are training
treatment reviews (care, education and involved in the training?” in learning disability
treatment reviews for children), where He says that he knows involving this
the family, agencies and an expert by type of expert works because he has seen awareness, have you got
experience gather to consider plans for a it happen. someone with a learning
person with challenging behaviour and/or
mental health problems. Preventing unavoidable deaths disability involved?
Asked about their future, he says: “In The STOMP programme has raised However, James remains positive. ”
the last six months, about four out of five awareness of overmedication. Asked if
care and treatment reviews have not led there should be a similar programme
to an admission.” for constipation, which has led to tragic, “I am really enjoying getting stuck into
Will they continue after march 2019? unnecessary deaths, James adds this,” he says. “There is much to do but I
James says: “I can’t see any way in which respiration, pneumonia, dysphasia am quite lucky to be asked to do
they won’t, because of the impact that and sepsis, all of which need more something I care this much about at this
they are having.” awareness. point in my career, when I don’t need to
The solution in his view is to reach be worried about any personal judgments
eugenics mainstream health professionals rather or reflections on me and I can therefore
Given some of the things we have been than specialist services for people with a be singularly focused on trying to do the
hearing lately about unnecessary deaths, learning disability. Therefore, he plans to right thing.” n
I wonder whether he thinks eugenics is connect programmes to existing
still alive. mainstream services rather than have Seán Kelly was chief executive of the
I tell him a story I heard recently of a separate projects. Elfrida Society from 2001 to 2012 and is
nurse saying to another, about a man with “I would hope that the work that we are now a freelance writer and photographer

www.cl-initiatives.co.uk Community Living Vol 31 No 4 | Summer 2018 13