Page 20 - Community Living Magazine 36-1

care and treatment reviews
Why experts by experience pulled

out of care and treatment reviews

In the wake of care scandals, a scheme to keep people out of
hospital was brought in. So why has a self-advocacy charity quit
and is calling on others to do the same? Ben McCay explains

oday, about 60 people from the moved quickly into a places nearer to
Thames Valley region are locked their family and friends.
Tup, away from home, in mental As Paul Scarrott, an MLMC expert by
health hospitals. experience, says: “We were hoping that it
This is why, earlier this year, My Life My would get people a better life, out of the
Choice (MLMC), an Oxfordshire-based unit and into the community. Call for liberty for all: Dawn Wiltshire, expert by
self-advocacy charity for adults with a “People have been in there a long time experience at My Life My Choice
learning disability that I co-chair, away from the family and they needed to
withdrew from NHS England’s Care and get back to have a better life.” We welcome the government’s words in
Treatment Review (CTR) programme. the action plan and some of its plans in
At a CTR, a panel of independent people the proposed reform of the Mental Health
discuss the care of someone who is at risk We are proud of ourselves Act, such as the removal of “learning
of ending up in a psychiatric hospital. for giving it a go and trying disability or autism” as an excuse for
CTRs were introduced following the abuse placing someone in an assessment
against patients at Winterbourne View to be part of making the treatment unit.
assessment and treatment unit in 2011. system work However if, as the government writes in
They are supposed to ensure that Building the Right Support, the goal is that
people’s views are heard while they are in people with a learning disability and or
hospital and that they leave hospital as The CTR programme has become autism “are supported to live full lives in
soon as possible, and to help prevent part of a process that does not work their community, in their home”, then it
similar scandals from happening. well enough to keep people out needs to take action to make this a reality.
An expert by experience is included of hospital. “The government’s got to do
as part of the review panel. This is We do not think taking part in it is the something,” says Scarrott. “These are
someone who has or cares for someone best use of time, and experts by people’s lives, so spend that money on
with autism or a learning disability. The experience should spend their time people getting support so they can be
panel also includes a clinical expert and campaigning for better care. nearer to their families and have their
the commissioner. lives back and have a better life.
The NHS England guide to CTRs says the Agree? Then join us “We want to get everyone out and back
expert by experience role is to help the MLMC would like to continue to invite in the community.”
panel understand what someone’s care is organisations to adopt our position that
like and how it could be better, and to we need to remove ourselves from the We need to remove ourselves
help ensure the person and family carers treatment review process, and campaign
have a productive review. for full system change. We would like to from the treatment review
work with allies and other organisations process and campaign for full
Hope versus reality who feel the same.
However, some 11 years after Some organisations have not been able system change
Winterbourne View, there has been little to back our decision and, while that is
progress in reducing the numbers of disappointing, we understand their choice
people locked away. to do this. With the CTR process, while it is
According to official figures, at the time We have also had some great support frustrating that we have been part of
of Winterbourne View, there were more from individuals and one-to-one something that we believe is failing some
than 3,400 people in similar discussions with organisations such as people, we are proud of ourselves for
establishments. In 2022, around 2,000 NHS England, and were able to explain giving it a go and trying to be part of
people with a learning disability and or our decision. making the system work.
autism are still in such units. The responses we have had directly and We believe change can happen, but
Abuse and poor care continue. The on social media include campaigners only if the people in charge recognise
Whorlton Hall scandal in 2019 and Rightful Lives, who describe our stand as their responsibilities and channel their
Eldertree Lodge in 2021 are just two more “important and principled”. power to return liberty to the thousands
sickening examples. The government this summer released its in our community who are locked away. n
MLMC believed that being part of the Building the Right Support Action Plan. It My Life My Choice
CTR process would make sure people got says the aim is to support more people to Ben McCay is co-chair of trustees at
the right care, and that people would be have the lives they want in the community. My Life My Choice

20 Vol 36 No 1 | Autumn 2022 Community Living www.cl-initiatives.co.uk