My blood ran cold when I heard about the vulnerable patients’ deaths at Cawston
Park.
The Challenging Behaviour Foundation emailed me and other member families of adults
with learning disabilities before the story hit the news, warning us that we could find
the details very distressing. I did and they were ..... but I believe the failures
that lay behind these deaths are the tip of the iceberg.
You see, sadly, these failures are familiar to me.
My daughter, Chrissy, who's now 37, spent 4 years in another private
hospital like Winterbourne View and Cawston Park after being repeatedly let down
by inadequate support provision in the community. During her hospital stay, I
reported unexplained bruising on her neck; a safeguarding investigation was
launched, bringing the hospital under scrutiny. However, Chrissy’s injuries were
subsequently attributed to self-injurious behaviour. I had never seen bruising
on her neck before and it was difficult to understand she could have caused
these injuries herself. A year later, the hospital came under fire in the press
for failing all the standards set by the Care Quality Commission, including the
one to prevent abuse.
The 2011 Winterbourne scandal had shone a spotlight on some of the practices that
go on behind the locked doors of these hospitals but still, it seems that little
has changed. What will it take?
These units are run as total institutions, similar to the long-stay hospitals that
were closed during the 1980s, which was meant to herald a new era of social inclusion
for people labelled as learning disabled. The resulting gap in the market provided a
lucrative business opportunity and a number of independent hospitals financed by
private equity companies were set up. A report commissioned by NHS England in
2014 called for an end for the system where these independent hospitals are
financially incentivised to keep patients in for as long as possible. However,
despite levying charges of up to £26,000 a month per patient, basic standards of
good practice are proving remarkably difficult to maintain in many of these
services.
Nevertheless, the hospital was Chrissy’s best chance. Despite its
problems, another group of professionals at the hospital were now challenging
the disempowering funding agendas and professional vested interests that were
preventing Chrissy from getting the support she needed. This knowledge informed
a discharge plan that provided indisputable evidence of Chrissy’s complex
support needs, unclouded by funding agendas. The interventions and support
Chrissy needed should have been available in her local community but they were
not.
Moreover, in our experience, the poor standards in these hospitals are also
reflected in care in the community. When Chrissy was ready to be discharged from
hospital, Mencap and the Challenging Behaviour Foundation included her story in
their Out of Sight report (Mencap, 2012). They said the Government is very clear
that people with a learning disability should be supported to live in their own
communities; it is difficult to understand why, when Chrissy was ready for
discharge, there were so many barriers in place and we had to do so much
fighting to overcome them.
Chrissy finally moved into her own home with 24-hour 2:1 domiciliary care support
in 2013. It went well at first as she always had a key worker/team lead in place
but, a year later, it was bought out by a big private investment company and the
quality of care gradually nose-dived. Chrissy’s service was being managed remotely
by managers who oversaw several services and a succession of them left. I was told
by one manager who left that she felt burnt out and unsupported. She said that she
couldn’t do her job effectively because she was always filling other management gaps
and fire-fighting elsewhere. Staff training was minimal, communication between the
office and staff working at Chrissy’s home was dire to non-existent, and morale
amongst Chrissy’s support staff was very low. I reported problems to the CQC,
who gave the service an overall ‘good’ standard of care. Having once worked as
an ‘expert by experience’ with the CQC, I knew what good care looked like and
reported that my main concerns lay in two inspection areas covered – the service
was neither responsive nor well-led. The inspector did not call me and there was
no follow-up. I became exhausted and demoralised by trying to fill in the
managerial gaps myself but was told by various health professionals and some
staff who worked elsewhere as well as with Chrissy that ‘this was as good as it
gets.’ Whistle-blowers raised concerns but did not feel that management had
listened or taken action.
However, there was no way I could give up on Chrissy by accepting these awful standards
of care and support and, thankfully, neither could the case-managing NHS commissioner.
Effects on Chrissy included a long-term refusal to engage in personal care and just
wanting to stay in bed. The NHS commissioner circulated Chrissy’s profile to care agencies
and a local not-for-profit group of charitable enterprise got in touch. One of their
managers knew Chrissy of old and had worked exceptionally well with her. This
organisation now provides her care services. They have far exceeded our
expectations by starting to turn things around in a few months. Chrissy’s first
bath and hair wash in months was a cause for great celebration! She will always
present significant challenges to services but I feel like this new service has
given us our daughter back.
Thank you for visiting my blog. These are stories of the unique issues faced by people with learning disabilities and their families, inspired by my experiences of parenting Chrissy, who was diagnosed with the rare chromosome disorder, 1q21.1 microdeletion, in her twenties. If you're wondering if counselling could help you with the challenges that you face in parenting someone with additional needs, contact me: info@janealcockcounselling.co.uk
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