P is a person of 46 years of age with mild learning disabilities, possible personality disorder. She lived independently until December 2021 with type 1 diabetes of a nature that was well able to be controlled when managed correctly. There was a documented history of non-compliance with her diabetes management regime, lack of engagement with supporting staff, behaviour regarded as obstructive, and rigid thinking.
In December 2021 P was admitted to the local hospital with serious and life-threatening complications following a period of non-compliance, having not taken Insulin for several months (cardiorespiratory failure secondary to diabetic ketoacidosis).
In January 2022 in the context of a discharge planning meeting once P was medically fit for discharge, an application was made to the Court of Protection for an order to admit P to a care home placement for further assessment.
The application was granted for a period of a few weeks to allow time for a capacity assessment to be completed and a care plan for care in a community setting (no doubt supported living) to be developed.
The commissioner then changed its mind and applied for approval to make that placement permanent or at least longer term.
The Court of Protection directed a single expert to assess capacity. By October 2022 there was no challenge to the expert evidence about lack of capacity, other from AH herself with whom the Judge spoke.
His Honour Judge Burrows was satisfied that P lacked capacity to, “make [all the] decisions with which the Court is concerned” and a fuller, written explanation of this judgement followed.
This looked back to 2005 when non-compliance was first recorded in GP records, to 2018 when there were concerns over her physical health, and when she was reluctant to register with a GP; then to December 2021 (a crisis admission to a local hospital) and to the January 2022 discharge planning multi-disciplinary team’s views when a capacity assessment focussing on understanding of health-related outcomes of non-compliance had been completed by a junior Doctor.
P had been found to have capacity in this area but others had expressed concern that as an easy read care plan had not yet been created by the hospital, the opportunity to ask the definitive question covering clinical interventions and acceptance of the proposed care plan, had been missed, and the Community Learning Disability Team felt that they still required a definitive answer as to whether P would or would not accept the care plan implementation. The District Nursing lead had expressed concern that P had previously requested the name and arrival time of the team, which they did not have the time to do, and felt that P’s assertion that the District Nursing team were to blame for her declining health demonstrated a lack a capacity.
The view was that the identity of the person responsible for administering Insulin, and acceptance of that person, was fundamental, given P’s history of rigid thinking, and a care agency was suggested as an alternative in order to reassess needs and how they would be met in the community.
In February 2022 the new expert was asked to assess capacity in relation to conducting these proceedings, making decisions about residence, care, diabetic care/treatment, and consent to the arrangements giving rise to a deprivation of liberty.
AH was knowledgeable about her condition but fixated on a sliding scale of insulin. AH demonstrated ability to retain information, was able to make informed decisions based on the information and can provide reasoning for refusing, she refused to give her own insulin, due to needle phobia, which Dr A had stated contributed to her weighing of information. She was able to communicate her needs in full, stating that she wished to allow the District Nurses to administer her insulin to help manage her diabetes. However, there was obvious concern that she was dictating to the treating team certain requirements that may, in fact, have been a way of frustrating the treatment entirely.
In October 2020 out of 62 planned visits, District Nurses accessed AH’s property only 8 times. On 13 occasions they were unable to contact her; on 41 occasions she declined access to them. In November 2020, she refused her insulin on 37 occasions.
She had stipulated where the District Nurses could park; that they should provide names of persons administering insulin and telephone 30 minutes before arriving. District Nurses had previously stated they simply did not have the time or capacity to meet these requirements.
The new court-appointed single expert focused on the history and the underlying paranoia and depressive state of AH.
“[she] is presenting with a consistent obsessive delusion which has become all-consuming for her. Due to her inability to emotionally regulate, both obsession and delusion are not unusual for her, but my current concern is that these “beliefs” are affecting her health and wellbeing, both physically and mentally, to the extent that she claims she has made herself homeless (as she is afraid to return home) and she has also received a verbal caution from the police for harassing/stalking a staff member who has chosen not to work with her anymore. The staff member had explained to [her] why she could not work with her anymore (witnessed by me and the staff members’ manager) and [she] was understandably very upset….[AH] has a long history of seeking care in dysfunctional ways, often by complaining about others or demanding the unattainable from them. She has become obsessively attached to support staff, to the point at which some staff have not been able to work with her anymore and the police have had to be involved… her care seeking behaviour is predominantly through making complaints and presenting with a variety of physical health concerns. She fosters complexity and confusion, and this is exacerbated by her refusal to allow agencies to speak to each other.. [it is hypothesised that] her increasing demands regarding her care needs have been precipitated by the presence in her building of a woman with substantial physical disabilities who required high levels of care (including 24 hours 1:1 care) and [AH’s] desire to have the same level of care as this resident”.
Those involved in her care and treatment had come to see her interpersonal difficulties, rigidity, egocentricity and inability to compromise or take the viewpoints as indicative of personality ‘disorder’ – paranoid personality disorder, characterised by pervasive distrust and suspicion of others, the unjustified belief that others are trying to harm you, suspicion about others’ motives, holding grudges and a view of the world as hostile; combined with a degree of attachment difficulties.
The judge was told that ‘learning disability and autism are lifelong immutable conditions, whilst personality disorder can be amenable to therapy, but this has not been effective in [AH’s] case.’
“[AH] does not understand that she has emotional, psychological and mental health needs and that her care needs extend beyond managing her diabetes. She does not identify with other residents at [the care home], stating ‘this is a residential unit for people with mental health, I don’t have mental illness’.
The judge added that whilst it was true that [AH] does not have a formally confirmed diagnosis other than learning disability, she has “substantial mental health needs relating to her anxiety, emotional dysregulation, disordered attachment and maladaptive coping strategies. She requires a care plan that prevents staff burn-out and supports professionals to work with her in a collaborative way that maintains relationships with her in the face of multiple challenges….she is unable to understand the consequences of her behaviour on the care that she receives and continues to behave in maladaptive ways despite repeated evidence of the harm that this causes to her.”
The judge agreed with the expert that ‘[AH’s] clinical team know her well and have a clear, considered and effective formulation of her needs which is much more important in providing her with the suitable care, treatment and support than a specific diagnosis would.’
The judge praised the expert’s approach ‘a clear example of … moving away from treating capacity decisions in “silos”, but rather considering how making decisions about different subjects interact with each other….[she] has considered the correct relevant information in her assessment, including crucially the reasonably foreseeable consequences of making the decision one way or another – as has most recently been made clear in A Local Authority v JB [2021] UKSC 52.’
CASCAIDr Comment
We see this quite often: “…..inability to understand that the care package she wishes to be supplied to her in her flat is simply not possible” – in our cases, this is often because public law does not support any means to oblige the commissioner to do what the person wants, but the person cannot absorb or accept that advice, and thus cannot weigh up what to do about it.
We think that this form of entrenchment can be seen as incapacity because of its impact on using and/or weighing the information that the person does not understand; as in this case, “extreme egocentricity and rigidity and refusal to take reality or other views into account” operate so as to negate that aspect of cognitive functioning.