This story, which appears to have hit the press again, was first reported by Wembley Matters in October last year. I reprint it here as it provides a much fuller account and at the end Brent Council's response to the Review findings and recommendations,
A Safeguarding Adult Review published by Brent Council
LINK raises serious issues about the service
provided by the Council and bought-in providers to people with an autistic
spectrum condition.
The case concerns ‘Cassie’ (not her real name) a Black
woman in her mid-50s who has lived in services for people with learning
disabilities and autism since she was a child. Information about Cassie was
limited to her clinical classifications and records held by health and social
care services, including the Independent Provider, the autism specialist
residential home at which she has lived since 1990.
Cassie was found to be HIV positive in 2016 which
triggered a safeguarding meeting. The Infectious Diseases Team confirmed that
it was sexually transmitted at some point between 2007 and 2015 while Cassie
was resident with the independent provider commissioned by Brent Council. It
was confirmed that Cassie did not have the capacity to consent to having sexual
relations and a police investigation was agreed. During March 2017 the
Safeguarding Adults Board was informed that the police investigation had been
closed. Cassie was moved to a different home that was managed by the same
provider.
The report outlines the poor quality of Cassie’s
provision:
It is remarkable that Cassie’s many years of residing in
long stay hospitals and latterly, at the Independent Provider, reveal so little
about her. Whatever the names of the hospitals she has lived in, observers and
some former residents have commented on the bleak and unstimulating
environments of large institutions. There were no opportunities for children
with severe learning disabilities to learn functional skills, including basic
communication skills, or to prepare for life beyond the institutions.
It is
noteworthy that the single sign which Cassie was consistently encouraged to use
was “Thank you.”
Knowledge of Cassie is primarily based on clinical
interpretation and classification and these do not help in deciphering the ways
in which she engages with others or with objects. There is neither a simple nor
consistent description of her. Yet support staffs’ understanding of Cassie
determines how she spends her days. The challenges Cassie faces in figuring out
the world are unfamiliar since so little is known of her developmental path.
The records suggest only partial accounts of her behaviour or aspects of
particular actions. How her interest in paper tearing is defined is critical.
During her adulthood, Cassie began to create scatterings of torn paper. The
Independent Provider notes that she becomes distressed when she is required to
pick up and put the pieces of paper in the bin. This prompts the question: Is
this the only possible intervention? It is clear that Cassie can communicate
intention. For example, she takes people to the kitchen when she is hungry and
she gets her coat when she wants to go out. It is known too that she needs a
lot of help in terms of her personal and intimate care. This does not preclude
her having unique forms of communication, demonstrating awareness
of others
and desiring to belong and participate. For example, she enjoys her mother’s
visits and she likes to sit with staff.
The records suggest that during the weeks prior to
Cassie’s HIV diagnosis, her world experience appeared to be confined to her
bedroom and the living room and, specifically, the sofa.
Cassie’s mother told the Review:
‘When Brent closed its
day centres I was told, “We’ll make a programme for her so she can got out,
meet people, walk around - we’ll put a programme together and include shopping
and visiting you.” Nothing materialised...’I was told that one place Cassie
could go to - the Independent Provider’s Day Centre was being “repaired.” She got
a place there but it didn’t last long. I had a letter saying that Brent had cut
the grant and she didn’t go back no more. She’s bored. It was better when
she went to the centre. Now they just sit in the living room with the music
channel on the TV. There are only three of them and that’s what they all do.’
Naturally Cassie’s HIV diagnosis was devastating for her
mother. The HR person at the provider told her that the incident must
have happened at night: ‘This is all I know. This rape, which I can’t talk
about or tell anyone about, this rape happened. Cassie had no control over her
body and this man takes over her body. You can’t get them to take tests because
of their human rights, What chance have you got. I asked the police if they
could offer a reward. They said “No” because people tend to close ranks.’
The review states that the majority of the Independent
Provider’s Risk Assessment date from the months of Cassie’s diagnosis. There
are many gaps in the ‘monthy reports’ and other information: ‘The notes convey
only biographical fragments, The monthly reports contain a lot of repetition
and evidence of “cut and paste.” This renders problematic the claim that these
will be subject to “trend analysis.”
General Practitioners who cared for Cassie said they were
shocked when the Infectious Diseases Team made their diagnosis because Cassie
is ‘so very vulnerable.’ As a patient she is sometimes compliant but there are
a lot of barriers to investigating what is wrong. Cassie’s cooperation depended
on how calm her carers were and this varied.
There is much more on the medical history in the report
but significantly it is reported that Cassie did not benefit from annual
reviews with none undertaken during 2008, 2011, 2013 and 2014. She has
contact with the Learning Disabilities Community Health Team for psychiatric
and a brief period of physiotherapy support and is reviewed in outpatients
every 6 months.
The report summarises the ‘best interests of the person’
provisions in the Mental Capacity Act (MCA) 2005:
·
Equal consideration and non-discrimination
·
Considering all relevant circumstances
·
Regaining capacity
·
Permitting and encouraging participation
·
Special consideration for life sustaining
treatment
·
The person’s wishes and feelings, beliefs and
values
·
The views of others
The report notes, ‘There is no reference to the MCA in
relation to Cassie’s care and support. Although the Independent Provider cites ‘best
interest meetings’ there are no documented examples examples of any such
meetings.’
Later it states, ‘Irrespective of the seriousness of
Cassie’s HIV diagnosis, no individual or agency has undertaken to determine her
best interest in relation for a achieving
a consensual approach to decision making concerning invasive treatment or even
essential treatment.’
In a telling passage the report says:
‘The absence of a credible life story is stark, that is
one which goes beyond setting out Cassie’s likes, dislikes and challenging
behaviour, for example. Without the account of Cassie’s mother and her GP’s
descriptions of what they have earned from supporting her, Cassie’s life-long
history of being supported by services is reduced to a disheartening
short list of home based activity. Although it is known that Cassie loves to
walk and her impulse to get out is undiminished, at the provider’s centre this
is given expression in her fast paced restlessness. Cassie’s life story is not
known. That is to say, the relevant parts of her past and present have not been
recorded. The services to which Cassie is known appear not to have any
processes for eliciting stories about her and her family as a means of
connecting her life to her present circumstances and the people who are
significant.’
The report issues a number of challenges to Brent Council:
Since Brent’s commissioning did not ensure that the
Independent Provider established the necessary conditions to support Cassie,
this is an opportune time for Brent to initiate a fresh approach to the support
of people with autism. What ‘autism specialism’ is Brent seeking? It cannot be
credible that faith is invested in a service which advertises itself as
specialist. Brent has a responsibility to identify and monitor the tasks
required ti address Cassie’s considerable support needs and those of others
with autism and learning disabilities, What arrangements are in place in Brent
to provide support to the families of people with autism at times of transition
and to ensure that workforce planning, training and retraining arrangements are
effective? The test of such investment will be in the improvements they bring
to the lives of people with autism and learning difficulties.
Concluding the review, Dr Margaret Ryan states that Cassie
has been failed by services and that by exposing her to sexual abuse by a third
party without appropriate care planning and risk assessment was
professionally negligent and possibly in breach of the duty of care: ‘The
evidence suggests a possible breach of the right to respect for private and family
life and potentially a breach of the right to protection from inhuman and
degrading treatment.’
Dr Ryan goes on to express disappointment that the
Independent Provider states that the organisation is unable to comment on the
assertion that Cassie was infected as a result of sexual assault as they has ‘seen
no evidence of this.’ The documentation does not support the assertion
that Cassie was solely supported by women staff.
At the time of the report Cassie remained with the
provider, albeit in different accommodation, and her mother is unhappy with the
arrangement and wants urgency in seeking an alternative placement. Dr
Ryan states that, ‘thus far, there is no evidence of attentive external
scrutiny of her post-diagnosis care plan. Since the documentation shared by the
provider and service reviewer is limited it is possible that these are systemic
matters.’
Dr Ryan suggest that Brent Council has to undertake a
great deal of work concerning the use of the Mental Capacity Act 2005 and the
Deprivation of Liberty Safeguards: ‘Cassie’s health is compromised and is
vulnerable to deterioration. It is not clear what “practicable steps” were
taken to support Cassie’s decision-making in advance of a determination of
incapacity.’
The Review’s Recommendations:
1) Since there
is cause for concern and uncertainty concerning the HIV status of the five
residents at the care home, Brent requests the Court of Protection to give
direction in this matter
2) Cassie
should be provided with additional interim support until she moves to another
service. Such support should be informed by the principles an management of
care as set out by NICE guidance
3) Brent’s
Safeguarding Adults Board seeks reassurance that:
· The
Transforming Learning Disability Services’ initiative of the CCGs, permits and
establishes with Brent’s Adult Social Care an ambitious path which promotes
greater attention to individual support needs which credibly involves (i) self-
advocates and (ii) engagement with the families of people with complex support
needs, most particularly in ensuring that account is taken of people’s life
stories and their future aspirations
· Future
changes (that result in discontinuities of personnel and functions) in respect
of reviewing and monitoring long-term placements must ensure that (i) people
funded by public services are better off or at least not worse off, (ii) http://www.lawcom.gov.uk/wp-content/uploads/2017/03/Mental_Capacity_Report_Summary.pdf
(accessed on 6 July 2017)
NICE (2012) Autism spectrum disorder in
adults: diagnosis and management (CG142reviewing is annual and (iii) goals
or “ends” for people receiving services are not displaced by undue attention to
“means”
· The
Transforming Learning Disability Services’ initiative adopts a proactive and
questioning approach to the scrutiny and oversight of all placements. Critical
skills should be evidenced such as: collaborating with people with autism and
their families; knowledge of effective care planning; knowledge of safeguarding
and, specifically, how to record safeguarding concerns; identifying potential
community collaborators; and because several medical conditions are
significantly more prevalent among people with autism compared with people who
do not have autism,ensuring that medical appointments are prioritised
· The
operational competences and track records of specialist providers are known to
service commissioners in term of the recorded outcomes realised for individual
people with autism
· The
Learning Disabilities Community Health Team and specialist providers can
provide evidence that they are (i) instrumental in working with GPs in
detecting health problems which would otherwise result in unnecessary
suffering; (ii) make it possible for residents to develop health routines such
as accessing health screening and health promotion activities; and (iii) are
persistent and creative advocates for people’s improved health and health care
– paying particular attention to the challenge of “diagnostic overshadowing”
· The
Learning Disabilities Community Health Team assumes a lead role in promoting
positive practice in the use of the Mental Capacity legislation
· The
signs being taught to people with compromised communication skills include the
sign for “No!”
4) Brent’s
Safeguarding Adults Board may wish to consider advising service commissioners
that questions must be asked about the mechanisms in place to ensure the safety
of people with limited articulacy, in particular those who are supported by
male workers.
Brent Council in a statement to Wembley Matters said:
“All of the partners on the Safeguarding Adults Board,
including the Council, have expressed our deep and sincere regret to both
Cassie and her family. We can confirm that Cassie is now safe and
happy and is having all her health and care needs met.
“As soon as the Council became aware of the situation the
Safeguarding Adults Team took immediate action to ensure that Cassie was safe
and receiving the support she needed, and further steps were taken to ensure no
other person was at risk. The matter was reported to the police, who
undertook a full investigation.
“Following these immediate actions, the Council asked the
Safeguarding Adult Board to consider commissioning an independent Safeguarding
Adult Review (SAR). A SAR is a nationally recognised process,
under the Care Act 2014. The Board and the Independent Chair agreed
this met the criteria for a SAR because there had been serious harm in a
complex case which involved a wide range of statutory and voluntary
agencies. The purpose of a SAR is to ensure the independent consideration
of the facts, and to use these facts to identify and promote effective learning
across all agencies. It is a key part of improving services in order to
prevent serious harm occurring again. The function of SARs is not to
apportion blame or make judgements about negligence.
“As a result of the SAR, the Safeguarding Adults Board has
a multi-agency action plan. This will be monitored by the Board and the
Board’s Independent Chair, who will ensure that the lessons have been learnt
across all the agencies involved.
“The Council has fully supported this process. We
have already delivered a range of actions to improve the support we provide to
vulnerable adults in Brent, including setting up a team that specifically
focuses on reviewing the quality of care and support for individuals in
residential placements, and integrating the health and social care learning
disability teams into a single team providing holistic support to adults with a
learning disability.
“Cassie continues to do well in her new home and we
continue to ensure that she is getting the support that she needs.”
