By Claire Martin, 14th April 2021
Twenty-eight year old Lucy (not her real name) usually lives in a shared home with one other resident and two 1:1 carers. On the night of 9th-10th March, while in their professional care, she suffered two fractures in her right leg and was taken to hospital. She’s still in hospital nearly a month later. There’s been no formal explanation about how Lucy’s leg was fractured and the police are now involved. Mr Justice Hayden commented that ‘the fracture is really quite alarming’.
Although the current crisis was occasioned by the fractures, these proceedings began back in April 2020. Lucy’s sister (who I will call Angela) wants Lucy to live with her. She wants to care for her on a full-time basis – and she wants to be the primary decision maker, so is seeking Deputyship. She has a spacious five-bedroom detached home with a generous garden and an annexe where off-duty staff could sleep. Lucy could have her own bedroom on the ground floor with an en-suite bathroom. Lucy’s mother and the rest of the family support this plan. The local authority (Kent County Council) has not supported it, and there is to be a final hearing before Keehan J on 4-6 May 2021. Today’s hearing concerned an interim arrangement for Lucy’s care on her discharge from hospital: Angela had applied to court asking for an order that Lucy could be placed in her care at her home.
An interim agreement
I attended this hearing (CoP 11919290 ) before Mr Justice Hayden on 29th March 2021. Lucy’s sister (represented by Ruth Kirby QC) was the applicant. The first respondent was Kent County Council (represented by Michael Bailey), second and third respondents were Lucy’s parents (who were representing themselves and were not at the hearing). Lucy herself was fourth respondent and was represented by Sophia Roper for the Official Solicitor.
Lucy has severe epilepsy which is very difficult to control and is exacerbated by multiple things, including emotional distress and change. She also has a diagnosis of moderate autism and moderate learning disability (though we heard that the day-to-day effects of the learning disability were significant and Lucy needs help with all aspects of living) as well as other physical health problems. We were told that, cognitively, Lucy functions at the 2-3year-old level.
There is an ongoing, substantive case regarding Angela’s application for deputyship for Lucy’s health and welfare, and property and financial affairs – however, this hearing was about an imminent decision regarding to where Lucy should be discharged, as an interim arrangement, from an inpatient period in hospital. Angela wanted Lucy to stay with her, with carer support. The Local Authority had been against this.
But when the hearing began, Ruth Kirby QC (counsel for Lucy’s sister) stated that a lot of work and deliberations had been going on behind the scenes, and parties had now reached an agreement for Lucy’s interim care. Lucy would be going home to her sister’s house for a trial period of five weeks (i.e. until the final hearing), with 24/7 1:1 support for Angela from a care agency, funded by the Local Authority.
Mr Justice Hayden expressed relief at this, and then asked Ruth Kirby QC to provide an outline summary of the case for the observers present, even though a way forward seemed to have been found. I found this extremely helpful: having been to several hearings over the past year where no such summary was provided, it is very hard to understand what the key issues are for P, the person at the heart of the hearing, or what has happened to date.
Lucy’s family’s contact with the Court of Protection dates back to 2012 when an application regarding her care was heard before Mr Justice Holman. The current case was first brought to the Court of Protection in April 2020 when, it was shocking to suddenly hear that, following lockdown, Lucy had not been allowed to see her family (within or from her home setting) between March and August 2020. Ruth Kirby QC noted that ‘contact resumed with the pressure of the court hearings in August 2020’.
Lucy lived with her mother until she was 18 years-old. They have a very close relationship and Lucy had (until COVID hit and lockdown was imposed) continued to spend two nights a week at her mother’s house (with no additional support). She also had regular contact with her father and sister, Angela. Since she was 18, Lucy has lived in several different local authority care settings, and since 2017 has lived in the house mentioned, with one other resident and 1:1 carers. We heard that Lucy is close to her family, who seem to have been incisive and relentless in their advocacy and care for her since she left the family home. Lucy’s wellbeing is reported to be closely connected to regular, predictable contact with her family, her closest attachment relationships. The family has not always seen eye-to-eye with the Local Authority, which is why a first hearing took place in 2012. Ruth Kirby QC reported that the Local Authority says that the family are ‘over-fussy and at times unreasonable and strident in their advocacy on behalf of [Lucy]’.
The family say that they have always tried to work with Kent County Council providers because it is very much in Lucy’s best interests for them to do so – but they have, they say, been met with ‘a sometimes aggressively defensive attitude from Kent County Council which is often obstructive to [Lucy’s] very real needs’.
Mr Justice Hayden stated:
‘The family can feel a pent-up sadness that finds expression in anger and sometimes the Local Authority can be an easy focus for that anger. Equally that anger can be well-merited and justified. But there isn’t any alternative to a cooperative process if [Lucy’s] best interests are going to remain at the centre”.“Whatever the challenges to the relationship between the family and the Local Authority, the reality is they are going to need each other in the future. Not working together is, as it were, not a choice.’
Concerns and challenges
Listening to this story of Lucy’s recent life, and her family’s efforts and persistence in caring for her, was quite shocking to hear – though not entirely surprising. There were so many things that were briefly mentioned, or alluded to in passing, that it was hard to take in all of the incidents and issues that have caused concern and rancour between the family and the Local Authority since Lucy left home. What was quite clear, though, was that things had become much worse over the past year or so, even before the pandemic.
Angela had cared for Lucy pretty exclusively in hospital over four inpatient admissions between January and April 2020 (as well as this admission), because the hospital staff needed Angela’s expertise to help Lucy feel safe and settled. Lucy was admitted in 2020 for increasingly serious seizures, a urinary tract infection and dehydration. We learned that Lucy’s emotional state is a delicate balance of regularity of contact with people who love her, predictability and familiarity within her environment and safe care (including, it was argued, needs around dietary and environmental triggers for seizures). Without this balance being good-enough, Lucy’s wellbeing can deteriorate quickly: she can stop eating and drinking, sleep for excessive periods, become less cooperative with her care and, when very distressed, smear faeces. In the absence of an ability to understand, herself, why she might be feeling upset or frightened, or to tell people in words even if she does understand why, it sounded like Lucy was very able to communicate her distress to others clearly through her behaviour, if they are able to look, listen and take action.
What struck me about all of this was that, when the care teams (in this case the acute hospital) needed assistance in caring for Lucy, Angela was allowed access and contact during lockdown. This would suggest that Lucy’s family relationships are key to her wellbeing. However, when back at the care home, these key relationships were not deemed essential during lockdown. It’s almost as if the family was called upon when the system itself felt it needed support, but was excluded when Lucy’s daily, ongoing, psychological needs were to the fore. It has been very hard for care homes during the pandemic – keeping residents safe from the virus and trying also to cater for their emotional and relationship needs have often been at odds (as discussed in other blog posts, e.g. here). In Lucy’s case, however, she ended up moving back and forth into hospital – which would have been best to avoid if at all possible – and it made me wonder whether a clear plan of allowing specific family visits (like in hospital) would not have been far better for all concerned.
The contested status of Lucy’s sensitivities and allergies, and how they contribute to her care needs, also remains unresolved. Michael Bailey (counsel for the Local Authority) noted that the family has been raising this since 2010. Ruth Kirby QC stated that any such needs have been ‘resisted heavily by the Local Authority’ and though the 2012 Court of Protection hearing found no evidence to support the queries, Lucy has since been diagnosed with Coeliac’s disease and has been found to have adverse reactions to an anti-convulsant medication and to synthetic perfumed products (such as washing powders). A referral to a specialist allergy testing team was meant to have been made in 2018 but that ‘didn’t progress’ into 2020, and has still somehow not been done. Ruth Kirby QC summarised that ‘it has now been accepted by all parties’ that such testing should take place, to enable an adequate care plan to be formulated for Lucy.
Mr Justice Hayden, in what seemed to me an expedient move borne of exasperation, offered a solution: he referred to ‘harnessing the synergy of these proceedings to do some good’.
‘I can get an expert in on the back of these proceedings – so there is no need to wait for a referral. This case has a very troubling background indeed’.
I thought that was a very diplomatic understatement. How can Lucy not have had these concerns properly investigated over this long period? Her seizures, as we understood them, are potentially life-threatening, and the question of triggers for the seizures are left to drift and investigation of them ‘actively resisted’ by the bodies charged with her care, it was suggested by counsel for Angela. This, despite years of evidence about the needs of people with learning disabilities being inadequately met by health and social care services.
‘The Review also exposed wider concerns about how people with learning disabilities or autism and with a mental health condition or challenging behaviours were being treated in England.’
‘There is consistent evidence in the studies reviewed that general hospital services vary greatly in how well they identify and make adjustments for patients who have learning disabilities. We know that poor care in hospital makes people with learning disabilities more likely to be readmitted within a month.’
George Julian’s blogs and live Tweeting of coroners’ inquests passionately and forensically address the failures of care and accountability in our health, social and judicial systems for people with learning disabilities and autism. On her website (https://www.georgejulian.co.uk/blog/) she describes her ‘primary focus is live tweeting coronial inquests into the deaths of learning disabled and autistic people‘.
So, the urgent issue of Lucy’s unexplained double leg fracture starkly illustrated for me the need for careful decisions around establishing her needs, where (and how) she is best cared for. It emerged that, despite Lucy having 1:1 care in a small home of only two residents, she somehow sustained two fractures in her right leg on March 10th 2020. According to Ruth Kirby QC ‘there is no start to an explanation as to how she sustained the fractures in the leg’. The judge noted that ‘a 90 degree rotation of the knee’ had occurred- the sort of injury (Ruth Kirby QC said) that might be seen with legs that get stuck in bedrails and then the person turns over – except that Lucy does not have bedrails. The Local Authority had suggested that osteoporosis might explain the fractures, though it was reported that a DEXA scan (bone density scan) was conducted and was ‘not determinative’ of osteoporosis. Further, Lucy had surgery to insert a rod into her leg and there was no splintering, which, we were told, would be expected with osteoporosis. All in all, there was not, yet, an explanation for how Lucy came to have such an injury; and the Local Authority had originally been suggesting that she return to the same home where she sustained the fracture. I could understand why Angela and the family were not in agreement with this proposal.
There was reference to a lot of effort on Angela’s part to find ways forward over several years. Most recently, following a hearing with Mr Justice Peel on 19th March 2021 and approval of a timetable for directions put forward by the Official Solicitor, Angela provided a ‘specific care plan’ as asked. The Local Authority had also been directed by the judge to compile a ‘balance sheet’ of advantages and disadvantages of Lucy living with her family, since they (the LA) opposed this option. Apparently, no balance sheet had been provided; rather a list of reasons why Lucy should not live with her family was provided. I did not see this document, so it is entirely possible that the Local Authority’s concerns were thought through – though curious that they could see no potential positives at all of Lucy living with her family.
“Dignity as an adult”
There was a suggestion, by Ruth Kirby QC, that the weight of the Local Authority’s focus was on what was described as Lucy’s ‘dignity as an adult’. This concept was reportedly being used by the Local Authority as the baseline from which to argue that Lucy should not live with her family. Ruth Kirby argued (notwithstanding consideration of how ‘dignity’ is being defined here) that this weighting is unreasonable and occludes other, more salient factors for safe and nurturing care for Lucy. Though other factors were not appraised in detail, I would posit that a potential overarching factor would be the psychological safety Lucy derives from her close relationships.
This made me think about dignity. How is ‘dignity’ understood and defined culturally, legally, in Human Rights legislation and in social and health care practice in the UK? There is a rich and interesting literature on the concept of ‘dignity’ – I am likely only aware of a very small slice. My concern is that it is a concept that can be invoked by anyone to support their position – and therefore how useful it is as a benchmark to draw a red line for someone’s care is potentially questionable. I will do a bit more reading and pondering and write a further blog about this, and would be very interested to hear others’ views and experiences of the use of this concept as it is used in practice in making on-the-ground decisions about health and social care.
An ideal solution is often not possible in life – and certainly did not seem possible for Lucy. Until this hearing the Local Authority position was that Lucy’s best interests would be met in one of two (new) care settings. That position changed just prior to the hearing, and we as observers were not sure why. The Local Authority was, however, now prepared to support an interim residence for Lucy at Angela’s home. There will no doubt be many challenges for Lucy’s family and the care team involved in helping her regain enough of a feeling of safety, predictability and consistency to enable her to join in with her rehabilitation. In the end it was Angela’s tenacity, and the Local Authority’s willingness to compromise, that have meant that she can, for the time being, live with people with whom she feels most familiar and safe. This surely is the best way to ensure ‘dignity’ and the conditions for any of us to flourish.
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin