Brent Council and Hoffman Foundation found negligent in shocking Safeguarding Review of care of adult with an autistic spectrum condition

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 Hoffman Foundation for Autism LINK
 
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 Hoffman Foundation 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 Hoffman, 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.