https://www.bailii.org/ew/cases/EWCOP/2023/30.html
This application to the Court of Protection concerned Tony, a man in his mid-fifties. The court was asked to determine whether Tony had capacity to make a decision as to where he should live, specifically to choose between two residential care home settings, Placement 1 and Placement 2. Additionally, the Court was asked to determine Tony’s capacity about his care provision, and his use of the internet and social media.
Tony was born with cerebral palsy and had been profoundly deaf since birth. In 2017, he fractured his spine and had been a wheelchair user since. When only a small baby, Tony was placed in the care of the local authority. He went to a number of nurseries and schools across the UK, all of which were for hearing children as priority was given to meeting his physical rather than his communication needs. As a result, Tony grew up with no access or exposure to the deaf community, although he was taught a form of British Sign Language (BSL). It was reported that in his childhood and adolescence, Tony struggled to communicate; was angry; on occasions, aggressive and highly emotional.
When Tony was 20 years old, he went to live at a facility for deaf people. He was described as lacking an identity and developed delusions that he had knowledge and skills that he did not have e.g., medical and forensic knowledge. In his thirties, Tony was regarded as lacking capacity to live independently, and to have a short attention span. Despite this, he went to college and learned computer skills. He exhibited some ‘strange behaviours’ including buying a high visibility jacket and attempting to direct traffic, and his aggressive behaviour towards others continued.
Testing of his intellectual and adaptive [social] functioning was undertaken, and it was determined that he did not have a learning disability and in 2011 Tony moved into his own flat with support from carers. This arrangement worked well for well for just under three years.
In 2014, Tony’s carers reported to the police that he had been accessing images of child sexual abuse, and his devices were seized. At this time, he was assessed by a consultant clinical neuropsychologist who found that his scores for general functioning were at the top of the range associated with a mild learning disability, but that his concentration and memory skills were much lower. It was noted at this time that Tony had good problem-solving skills but would struggle to apply these skills in real life situations.
Tony persisted in accessing images of child sexual abuse online, despite completing internet safety training. The police were involved, and he was served with a Sexual Risk Order [Sexual Risk Orders are legislated for in s.122A of the Sexual Offences Act 2003]. He was allowed to continue to use a computer, under supervision, but said that under that limitation he would rather not use a computer at all.
In 2021, an assessment was completed to ascertain Tony’s capacity to use the internet. The group of professionals completing the assessment determined that he was unable to understand or weigh up the consequences of looking at such images and concluded that, functionally, he had a learning disability.
Around this time contact was made with Placement 2, a five-bedded residential care home, exclusively for male adults at risk of encountering the criminal justice system. Placement 2’s CQC registration states that its service is only accessible by residents with a learning disability.
For many years, professionals working with Tony had supported him on the basis that he had a mild learning disability. However, psychometric testing undertaken in May 2022 by the consultant clinical psychologist, Dr O’Rourke, identified that Tony’s IQ was in the low average range, meaning that he did not meet one of the three mandatory criteria for diagnosis of a learning disability: [a) a significant impairment of intellectual functioning; b) a significant impairment of adaptive (social) behaviour; c) both impairments arising before adulthood. [This is from the 2015 Guidance on the Assessment and Diagnosis of Intellectual Disabilities in Adulthood published by the British Psychological Society]. Dr O’Rourke did conclude, however, that Tony’s inability to understand information presented to him, or comprehend the consequences of his decision, meant that he functioned as if he had a learning disability.
This diagnosis, or lack thereof, has been determined in case law as unnecessary as a prerequisite to assessing capacity, within the framework of the Mental Capacity Act 2005. MacDonald J’s decision in North Bristol NHS Trust v R [2023] EWCOP 5 [CASCAIDr’s write-up of this case can be found here] established that:
“…the wording of s.2(1) itself does not require a formal diagnosis before the court can be satisfied that whether any inability of R to make a decision in relation to the matter in issue is because of an impairment of, or a disturbance, in the functioning of the mind or brain. The words “impairment of, or a disturbance in” are not further defined elsewhere in the Act. In these circumstances, there is no basis for interpreting the statutory language as requiring the words “impairment of, or disturbance in” to be tied to a specific diagnosis. Indeed, it would be undesirable to do so. To introduce such a requirement would constrain the application of the Act to an undesirable degree, having regard to the complexity of the mind and brain, to the range of factors that may act to impair their functioning and, most importantly, to the intricacies of the causal nexus between a lack of ability to take a decision and the impairment in question.’’
However, the lack of a formal diagnosis of Learning Disability was determined to be actively causing problems for Tony in his everyday life, not least that Placement 2 put his move on hold, stating they could not accept him without a formal diagnosis. Furthermore, his access to the Forensic Disability Service offered by the Council [the Forensic Community Learning Disability Team supports individuals with a learning disability who have committed an offence or who display offending behaviours but have not been convicted], was in jeopardy over doubt about his diagnostic status.
What was considered
Dr O’Rourke’s assessment and evidence was considered by the Court. Dr O’Rourke is a consultant clinical psychologist who has worked predominantly in the field of mental health and deafness since 1989, and the Judge considered her to be a ‘’national, if not international expert in her field’’. She assessed Tony in accordance with the BPS Guidance.
The BPS Guidance states that “a judgement as to whether or not an individual has an intellectual disability should only be made when all three components of the assessment are carried out by an appropriately qualified professional, who is able to justify their opinion in accordance with this guidance. This would reduce confusion for individuals, families and services.” The appropriately qualified professional would be a psychologist, and the three criteria necessary to an assessment of learning disability are as set out above.
Dr O’Rourke first saw Tony in early February 2022, when some Covid restrictions remained in place, meaning a comprehensive assessment was impossible. She re-visited him in May 2022, when she conducted a long interview with Tony and assessed him using the Wechsler Adult Intelligence Scale fourth edition (WAIS-IV). She concluded, on Tony’s capacity to make decisions about his residence, care needs and use of the internet, that:
‘’Tony’s nonverbal skills were within the normal range; however his acquisition of knowledge and skills was poor as a result of deafness leading to lack of access to information and learning. That lack of access is not unusual among deaf people, but it had been exacerbated in Tony’s case as a result of him being in schools for hearing children in his formative years and thus without access to effective communication with his peers, consequently, he had poor understanding of matters that would be understood by most individuals with his nonverbal skills. [This] inconsistency was explained by educational and experiential deprivation, not organic impairment; [and] the fact that his intellectual potential was within the normal range raised the question of whether the diagnostic test of the MCA was met.’’
Dr O’Rourke elaborated on her findings, saying that he did not meet the criteria in the BPS Guidance for a diagnosis of Learning Disability. “The fact that he can learn computer skills, adapt his signing to meet my needs, understand humour and answer questions involving ‘why?’, all support the notion that he does not have a learning disability. However, there are clear deficits in understanding of more abstract and complex matters and impairments in adaptive functioning, most notably a lack of insight into his own needs and matters concerning risk.” She went on to say that “this discrepancy and his very obvious difficulties in adaptive functioning are a result of lack of access to formal and incidental learning, lack of opportunity and impoverished linguistic environments which did not afford him the opportunity to develop.”
This evidence was tested in court, and there was no challenge to Dr O’Rourke’s findings in her assessment of Tony’s IQ, nor that had his early life experiences been different (i.e., had he attended a school for deaf children) his level of understanding would not be where it was now. Dr O’Rourke found that Tony had learned words such as ‘court’ and ‘prison’ but had no understanding of what they meant in reality.
In relation to the images of child sexual abuse, Tony showed no true understanding of the potential criminal consequences of accessing these, how they are harmful to children, or why society deems the images unacceptable. He has however learned to say, if asked, that it is wrong and knows that people will be angry with him if he looks at them and will ‘take the internet away’. He has therefore adapted his behaviour to hide his devices.
Dr O’Rourke recommended that work continue with Tony to help him gain insight into these matters, and she considered that Placement 2 was the right environment for this to happen.
Notwithstanding Dr O’Rourke’s considerable expertise, the Court was informed that a GP had assessed Tony as having mild Learning Disability. Furthermore, the Council had arranged for Tony to be assessed as part of the Deprivation of Liberty Safeguards process by a psychiatrist who diagnosed the same. Neither the GP nor the psychiatrist were willing to put this in writing, however. Dr O’Rourke responded to this challenge to her assessment by saying that in her experience most (though not all) psychiatrists are not trained to administer the WAIS tests and therefore may not be fully cognisant with them or appreciate their significance.
It was considered in court that some professionals may presume rather than establish an IQ below 70, where the adaptive behaviour criterion is met and that the term ‘learning disability’ may have been used to describe functionally incapacitous decision making, without intending to make a formal diagnosis. This, as in this case, can cause confusion as to whether the three criteria as detailed by the BPS Guidance are met, with a potential to compromise a person’s care and welfare.
In relation to Tony’s ‘diagnosis’, Dr O’Rourke was asked whether she would endorse a formulation that in the context of having an IQ on the fourteenth centile [meaning that 14 percent of people would score the same or less on an IQ test], Tony has a longstanding impairment of the mind or brain, acquired before his eighteenth birthday as a result of prolonged deprivation of communication, education and life experience, which is best termed “a functional learning disability”. She agreed that she would, and Placement 2 confirmed that it would consider this formulation to be sufficient to offer Tony a placement.
When it came to the judgment, the Judge, Gollop KC, was satisfied, on the balance of probabilities, that Tony lacked capacity to decide where he should live, how his care needs should be met, and safe use of the internet and social media.
The inability to make each of these decisions was found to exist by reason of an impairment in the functioning of his mind or brain. The Judge determined that the impairment was the result of stunted mental development, occurring before the age of 18, because of prolonged deprivation of communication, education, social learning and life experience, in combination with institutionalisation, and ultimately operated as a functional learning disability. She found that Tony was unable to understand why accessing images of child sexual abuse was wrong, the potential consequences for him if the police were involved, and the harm caused to children directly and to wider society indirectly by his actions were he to be allowed unrestricted, unsupervised internet access.
The Judge further found that this inability to understand why he must not access such images was directly related to his lack of capacity in relation to his residence and care needs. Tony has stated a preference to live at Placement 2 because he believed that, if he was living there, there was a chance that he would get his devices and internet access back, whereas this was not correct. He further rejected care from professionals who knew him well when that care was prevention of his going online unsupervised. He was unable to understand that no professional would allow or help him with this and therefore sought to find a placement and care where he would be allowed to do this.
The Judge authorised a resumption of Tony’s transition to Placement 2, subject to the final determination of the best interests decision. She further made an interim order which permitted support workers to supervise Tony’s access to the internet and social media, and to prevent him from accessing images of child sexual abuse or any other illegal material.
It was brought to the Court’s attention that Tony has, when unable to access images of child sexual abuse due to device controls, sought out pictures or videos of, for examples, children in swimming costumes. The Official Solicitor requested that ‘’crime adjacent’’ images such as these be included in the interim order, but this was declined by the Judge. She stated that this would be ‘’unduly restrictive’’ as these images are not unlawful to view or possess and prevention could be difficult to justify at the time when Tony was currently choosing not to access the internet at all whilst supervised.
CASCAIDr Comment: This is a really interesting case highlighting that although in theory we have moved beyond a need for a diagnosis in order to sort out appropriate services, in fact we haven’t, or at least not quite!
The Care Act 2014, which is about the right to services, says in s1: ‘’The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being’’ mentions nothing about capacity, let alone a diagnosis, and indeed highlights in s1(3) that regard must be had to ‘’the need to ensure that any restriction on the individual’s rights or freedom of action that is involved in the exercise of the function is kept to the minimum necessary for achieving the purpose for which the function is being exercised.’’
The Mental Capacity Act is not about services at all; it is about a lawful regime for taking decisions to do things to and with and for people who lack capacity, whether one is a relative, a stranger, a commissioned care provider or the council or NHS body liable to pay for the services.
We think that the provider misunderstood the significance of categories of client stated on CQC registrations as presenting an admissions hurdle preventing it from taking people into a service contract unless they had a formal diagnosis. We do not think that CQC has ever removed any service’s registration on the basis that the person is not actually needy enough to come within one’s specialism.
A check on the CQC site leads one to this:
The regulations require that in your statement of purpose you describe the range of peoples’ needs that your service intends to meet. People using services may have various needs resulting from physical, sensory or cognitive impairment, their health, their background (for example, their culture or religion) or other life events (such as service veterans or victims of domestic abuse). While we expect you to be able to demonstrate that you can meet all the needs of every person using your service, some needs will require you to have specific knowledge, skills, training or facilities in order to care for those people appropriately and safely…. Examples include dementia, physical disability, sensory impairment, mental health, learning disability or autism.
If in an exceptional one-off circumstance you want to provide a service to someone whose presenting need is outside your service user bands, you must still update your statement of purpose to describe the change in specialist needs that the service is now meeting. You must notify CQC of this update but don’t need to add the additional service user band unless you intend to offer services to other people with that specialist need. In this one-off scenario we will not usually add the service user band to your location but will seek reassurance that you can meet the person’s specialist needs.
The decision seems to us to be a sensible one about the fact that a medical or psychiatric or formal diagnosis is not needed before one may be found to lack capacity; nor before one can be entitled to Care Act services, nor before one can be admitted to a care home for the specific sort of client envisaged by the provider’s mission statement.
In North Bristol NHS Trust v R [2023], MacDonald J identified that the strict application of diagnosis-based capacity assessments fails to consider the complexity of the mind and brain, and the range of factors that may act to impair their functioning. This was evaluated as a ‘capacity masterclass’ in terms of guiding professional practice.
It is good to see that this is highlighted again in this case, which was heard only a short time afterwards, and we hope that the lessons learned from these judgements roll out into practice to avoid similar situations in the future. The judgment is in line with the direction of travel generally in capacity cases regarding criminal behaviour – i.e. that if one doesn’t understand the need for consent or that doing something is wrong in the criminal law sense, then one cannot be said to have capacity to do what one wishes to do or is determined to do, and that one is entitled to be prevented from the risk of involvement with the criminal justice system, in one’s best interests. Some may find that paternalistic, but we think that it is benign and utilitarian.
We think it would be possible to lock someone’s access to the internet down at the router level to restrict access to white-listed sites and that an organisation such as Placement 2 would be quite likely to be doing that in any event with its own equipment.