Section:GDN 1N PaGe:32 Edition Date:190724 Edition:01 Zone: Sent at 23/7/2019 12:44 cYanmaGentaYellowb
- The Guardian Wednesday 24 July 2019
32
SocietyLearning disabilities
How specialist doctors
could save people’s lives
Saba SalmanT
he fi rst doctor
specialising in
profound and multiple
learning disabilities
in the UK is set to be
recruited later this year.
Hull clinical commissioning group
(CCG) took the decision to employ
a specialist PMLD doctor to support
adults with complex needs after the
condition of a patient, Erica Carlin,
improved dramatically following
the care she had received for serious
digestive and bowel problems from
a palliative care doctor trained in
learning disabilities.
Three years ago, doctors had told
Carlin’s family to prepare for her
death. They said they could no longer
treat the then 34-year-old, who hasepilepsy and profound multiple
learning disabilities. Today her health
is stable. She lives in residential care
in Hull near her family and enjoys
trips to the local park.
Her health was transformed,
say her family and campaigners,
because the palliative care doctor
she was referred to had happened to
train in a medical specialism called
“intellectual disability” in Holland.
There, medics are uniquely taught to
put patients with learning disabilities
at the centre of their care. As a result,
the doctor was able to coordinat e
the professionals involved in Carlin’s
care, including neurologists, bowel
consultants, the GP and learning
disability nurses, to ensure they
provided holistic support.
Carlin’s mother, Jeanne, says:
“I don’t think Erica would still be
with us if someone hadn’t looked
at all of those parts that make up a
person. With one doctor liaising with
everyone, we didn’t have to keep
trying to get hold of consultants.
The doctor suggested something
and we’d start the prescription
immediately rather than waiting for
appointments.”
Carlin’s story proves the need fora network of specialist physicians,
according to a group of experts made
up of parents of people with learning
disabilities, learning disabled people
themselves, a psychiatrist, nurses,
and health agencies such as NHS
England and Public Health England.
The group’s work is timely because
of a growing focus on the entrenched
health inequalities faced by learning
disabled people. Autism and learning
disability are priorities in the NHS
long-term plan, and a recent NHS-
commissioned review of mortality
rates shows learning disabled people
die earlier and are more likely to
die in hospital than the general
population. Recent inquests into the
deaths of people including Richard
Handley , Joe Ulleri and Oliver
McGowan refl ect the inequality.
Research shows that GPs
lack confi dence with learning-
disabled patients and that most
get less than a day of training.
Learning disability nurses support
appropriate treatment and care
plans, but fi gures from NHS Digital
show that the number of learning
disability nurses ha s fallen from
5,368 to 3,247 – a staggering 40% –
between May 2010 and April 2018.In Hull, the CCG is collaborating
with families on the job description
to recruit the PMLD specialist, which
is a two year pilot. “They’ve told
us that people who have learning
disabilities and multiple health
needs struggle to navigate the care
system and we recognise that this
may mean patients haven’t always
received the care they needed in the
most coordinated way,” says Melanie
Bradbury, the CCG’s strategic lead
for mental health and learning
disabilities commissioning.
Victoria Smith, who has a
learning disability and works at
the charity Stay Up Late, welcomes
the idea of specialist doctors as
she worries about misdiagnoses
“because someone might have a
communication problem”. “I pulled
a ligament in my ankle, they gave
me some leafl ets and sent me home.
They didn’t explain it to me ... it
would be good if you had the same
person to speak with so you can
build a relationship,” she says.
Oliver McGowan, 18, who had
epilepsy, cerebral palsy and autism,
died at Southmead hospital in
Bristol in 2016 after being given
antipsychotic medication. He and
his parents had warned doctors that
the drug might harm him. Oliver’s
mother, Paula , has campaigned
for the government to introducemandatory learning disability and
autism training for health and social
care staff. She supports the idea of
having specialist doctors for people
with learning disabilities: “It could
mean that when someone presents
with challenging behaviour this isn’t
necessarily seen as a psychiatric
disorder but could be the result of a
medical condition,” says McCowan.
But she warns that the specialist
will only make a diff erence if they
call the shots. They “need to be
suitably empowered in all clinical
settings and available 24/7 – they’ve
got to have the casting vote”.
Critics, including learning
disability nurses, question the
need for a new specialty and
suggest nursing needs better
funding and recognition. Daniel
Marsden, senior lecturer in learning
disability nursing at Kingston
University, warns that there could be
recruitment problems for specialist
doctors, given the extra training
required. However, he admits
the current system “struggles to
coordinate care across specialisms”.
“I don’t think there’s necessarily
duplication, although the roles do
intersect.”
Responding to concerns, the
former health minister, Norman
Lamb, a Liberal Democrat MP, who
convened the expert group, stresses
that specialists would “complement
and support” learning disability
nurses and “challeng e a culture that
too often treats people with learning
disability as second-class citizens”.
Lamb’s sister, retired GP Kirsten
Lamb, is coordinating research for
the expert group on a specialist
doctor role. She believes it is “a
possible solution to part of the
inequality problem facing people
with learning disabilities”. She
explains that a specialist would lead
the care of someone with complex
needs in a multi-disciplinary team
similar to th ose in geriatric care or
community paediatrics. “We should
have the same approach in learning
disability,” she says.
As for practical challenges,
Kirsten Lamb believes it is not yet
clear if the role would require new
courses in medical schools. She
says the expert group will need to
closely watch how the Hull model
progresses and evaluate its impact.
NHS England says it will look at
the research when it is published.
“NHS England will consider this
proposal as part of a larger body
of work to support the care and
treatment of people with a learning
disability,” says an NHS spokesman.
Back in Hull, Jeanne Carlin
remains resolute: “In terms of
stopping the premature deaths of
people with profound and multiple
learning disabilities, this specialist is
the answer.”▲ Erica Carlin, a woman with
multiple learning diffi culties,
who doctors had written off
PHOTOGRAPH: ANDY LORDThe UK’s fi rst physician
for those with complex
needs could help reduce
huge health inequalities‘I don’t think Erica
would still be with
us if someone hadn’t
looked at all those
parts that make
up a person’Jeanne Carlin
Mother of Erica Carlin40%
The reduction in the number of
learning disability nurses from
5,368 in 2010 to 3,247 in 2018РЕЛИЗ ПОДГОТОВИЛА ГРУППА "What's News" VK.COM/WSNWS