Transforming care in England

Date15 February 2019
Published date15 February 2019
AuthorJean O’Hara
Subject MatterHealth & social care,Learning & intellectual disabilities
Jean OHara
Transforming care in England
When the National Health Service in the UK was set up in 1948, the colonies or institutions which
were built originally in the nineteenth century to segregate people with learning disabilities from
the rest of society, became hospitalsin which people were nursedand their problems defined
in medical terms. We now know how damaging institutional life was for many people. Because of
their size, location and regimented routines, institutional services made people dependent,
powerless and lacking in choice, privacy or social networks. They were often treated inhumanely,
and sometimes with deliberate cruelty or abuse (Sperlinger, 1997). Although since the 1980s
many long-stay institutions have closed with a move to new community service provision, many
of the attitudes and behaviours and some practices remain as legacies of the past.
Much has advanced in public health, in the management and prevention of infectious diseases,
in the delivery of antenatal, prenatal and postnatal care. Premature and low birth weight babies
have a significantly higher survival rate, and society now cares for children with multiple
disabilities and complex needs. The average life expectancy for an adult with learning disabilities
has also risen although we know they die on average 1320 years earlier than someone
without learning disabilities, often from causes that are preventable and avoidable. Transforming
Careis a three-year NHS England funded programme (20162019), in response to the
perceived slow pace of change following the exposé of abusive practices at a non-NHS
assessment and treatment unit (Winterbourne View) for people with learning disabilities and/or
autism. A hospital is not a home. At the heart of the Transforming Care Programme is
co-production, giving people with learning disabilities (and those with autism) and their families a
voice that is listened to, addressing health inequalities through a rights-based approach and
building capacity and person-centred support in the community to reduce reliance on
inappropriate inpatient provision.
This special issue is a collection of papers, written by clinicians, practitioners, commissioners and
others who are working at a national level, alongside experts by experience and family carers, to
transform care. It may not be of the same style as previous issues, but it captures the uniqueness
of our journal, with its original focus on translating policy into practice and sharing practice-based
evidence. NHS England uses the term learning disabilitiesrather than intellectual disabilities,
so we have allowed for this terminology to be interchangeable in this special issue. Whaley and
colleagues remind us that the words we choose to use can either oppress and diminish or
empower and humanise. They present a framework for looking at the power of, and around,
people with learning disabilities who have mental health issues or display behaviour that can
challenge services. Sanderson, in his paper, describes the potential a personalised approach
and personal health budgets could have in promoting choice and control over ones care.
He argues they can not only improve health and care outcomes but reduce the total spend
across the system.
In October NHS England (2015) published a new national service model (Building the Right
Support) and signalled its intention to close the last remaining free-standing learning disability
hospital in the country.Turners case study in this special issue comesfrom the North East of the
country and illustrates the culture change and local leadership required to make things happen:
how every aspectof the jigsaw can come together if we work inpartnership, as one team, to create
the conditions within which the person can be discharged from a mental health or specialist
learning disability hospital, and supported to have and live an ordinary life in the community.
DOI 10.1108/AMHID-01-2019-070 VOL. 13 NO. 1 2019, pp.1-2, © Emerald Publishing Limited, ISSN 2044-1282

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