By Claire Martin, 25th June 2021
A man with Alzheimer’s disease, FS, was living with, and being cared for by, his daughter until mid-April this year when he “became poorly” and was admitted to hospital for treatment.
A few weeks later, when he was ready for discharge from hospital, on 12th May 2021, the professionals held a best interests meeting (not attended by FS’s daughter) and decided that he needed to go to a care home. That’s where he’s been living for the last four weeks.
His daughter does not agree with this decision. She wants him to return home, where she’ll be the primary carer, with some help from professional carers.
He’s still in the care home without (at the time of the hearing) a standard authorisation for the deprivation of his liberty.
FS’s daughter made an application to court to get her father home again, and the first hearing of her case (COP 13751629 ) was before Mrs Justice Lieven on Monday 7th June 2021 via MS Teams. It lasted for about an hour.
Normally, when there is a disagreement about where someone should live, and an argument that the person is unlawfully deprived of their liberty, the case comes before the court as a s.21A application. But in this case the daughter couldn’t make a s21A application (challenging a DoLS Standard Authorisation) because no standard authorisation had been made!
There were various problems with the organisation of this hearing: there were no position statements, and an order had gone astray, so neither the CCG nor FS himself were represented at this hearing. Clearly, the decision about where FS should live would have to be delayed (“I am not going to be able to safely discharge FS today” said the judge).
There was a suggestion that the whole thing could be sorted outside of court. It seemed that Mrs Justice Lieven hoped initially to avoid what she called “a massive piece of litigation”, saying “we may be able to cut through this … and can just get FS back home with his daughter and a support package”. Addressing Emma Waldron, she asked:
“What triggered all of this? [Daughter] was looking after [FS] for years – with no concerns. I understand there were some relatively standard tensions to do with COVID and tensions between professional carers and the daughter. But it all seems to have escalated in ways I don’t understand. The obvious thing when he was fit to be discharged was for him to go home with a care package. Why didn’t that happen?”
Nobody seemed to know the answer to that question. Counsel for the LA, Emma Waldron said:
“I am not in a position to answer that. I need a witness statement from the Social Worker. There is some suggestion that [FS’s] needs had changed.”
Later she added:
“The LA hasn’t had a significant amount of time to consider. … There has been no proper assessment of [FS’s] current needs. He is awaiting a CHC [Continuing Health Care] assessment via the CCG [Clinical Commissioning Group] – then the LA can conduct their own assessments.”
So, it’s not at all clear how this situation has arisen.
At another point in the hearing Mrs Justice Lieven described it as “a pretty minor falling out that has led to a quite inappropriate level of legalisation”.
“This seems an inappropriate escalation. I would so much rather the money the Local Authorities spend on barristers and solicitors in cases like this, got spent on the care of elderly people! Think how many care workers could be paid with what a half-day hearing in the High Court costs!”
In the meantime, as Ben McCormack starkly reminded the court:
“All parties agree that [FS] is deprived of his liberty in the care home There is no authorisation in place at present. As we sit here today, he’s unlawfully deprived of his liberty.”
The judge asked whether FS’s daughter had been able to see her father at the care home:
Ben McCormack: No, she’s very nervous about the position she’s been put in – all of a sudden, after many years of caring for her dad, then suddenly safeguarding alerts. A cloud of suspicion has been placed over her and she’s not sure what that cloud of suspicion contains.
Given that there is no standard authorisation for deprivation of liberty in place, there’s nothing – in principle – to stop FS from leaving. As the judge said to counsel for the daughter: “If they don’t issue a standard authorisation, your client is legally and morally within her rights to walk in and say ‘okay Dad, let’s go home’”. She noted that FS’s daughter had been very reasonable and “sensible” in that she “hasn’t tried to walk in and grab the wheelchair and take him home”.
But, she added, “the LA needs to decide very quickly whether or not to make a standard authorisation”. Turning to counsel for the LA she said, “You really need to do something about this standard authorisation, don’t you. You’re wide open to a deprivation of liberty claim”.
Emma Waldron stated that the LA was aware of this and it “was being looked at as a matter of urgency”.
Judge: You have to do better than that. You can’t ask the High Court to turn a blind eye to illegal detention. If this was an immigration case, I would be letting him out now. You can’t unlawfully detain people in the UK. You’ve got four days to sort this out. If the situation is that he should just go home – then just do it. I’m not going to order you to do it because I haven’t got the evidence.” [Judge’s emphases]
Judge (addressing Ben McCormack): “At 4pm on 10th June – if you’ve not got the standard authorisation, I will set him free. You can’t just exist in this extraordinary world where he’s being deprived of his liberty but no one seems to care very much. Just because he’s old and infirm does not mean you can deprive him of his liberty!”
On behalf of FS’s daughter, Ben McCormack asked for a “tight timetable” moving forwards. Given that a needs assessment was required, and the Official Solicitor needed to be engaged to act on behalf of FS, the next hearing would be not next week, as the judge initially hoped (“to bang some heads together”), but the following week, on 24th June. Unless, of course, it is resolved out of court as HHJ Lieven would prefer. It did not appear on the court listings for 24thJune 2021.
This was a disturbing case with powerful comments from judge. As she stated: “Just because he’s old and infirm does not mean you can deprive him of his liberty.” This seems to be what had happened. I did wonder whether the care teams were not discussing their concerns about his needs and care with FS’ daughter: how could it have come to this, where she did not understand why she was under a ‘cloud of suspicion’?
Mrs Justice Lieven is a wonderfully plain-speaking judge and she made her views about this case very clear. She was remarkably straight-talking in her assessment of how this case had even reached court. She was clearly unimpressed with how the public bodies had conducted, and continued to conduct, themselves.
Best interests meeting without daughter
I was shocked that the best interests (or ‘professionals’) meeting, and subsequent transfer of FS to a care home had happened without the inclusion of his daughter (his main carer), as required by the Mental Capacity Act 2005 s4(7) when deciding someone’s best interests. She was at the hearing with her solicitor and was clearly fully engaged in her father’s care. It wasn’t discussed at the hearing why she had not been involved in these decisions.
No Standard Authorisation for Deprivation of Liberty
Care systems are so familiar now with Deprivation of Liberty Safeguards requirements, and the Court of Protection is open 24 hours a day, 365 days a year for emergency applications. Someone (or some people), somewhere, must have decided to prevent FS from returning home without following the legal procedure.
They might have had serious concerns about him returning home, though the Judge didn’t appear to think that anything sinister was going on with the daughter’s care of FS.
It felt as if this was happening to FS simply because it could. This is really worrying. If FS’ daughter had not responded in the way she had, would FS remain unlawfully deprived of his liberty now? Would other, less restrictive, options remain unconsidered? It made me wonder how often this situation might happen – I have no idea, but if the only ones shouting about it are relatives who are not happy, then it means that many professionals remain silent when they must know that the law is not being followed. Is this a resourcing issue? Professionals with too high a workload leading to mistakes and oversight, rather than deliberate over-riding of legal procedure? For FS though, it was a fact that his daughter had questioned the decision and so the issue was evident to the professionals involved. It feels like a parlous state of affairs.
There are many questions bouncing around about this. We didn’t have any evidence from the public bodies about their decision-making process regarding FS’ care needs. Notwithstanding the illegal detention aspect of FS’s care, it was impossible at this hearing to form a picture of his needs, concerns about, and options for, his care. As noted though, the judge did not express any concerns about the quality of care FS’s daughter provided – comments relating to living at home focused on needing additional carer support.
If it was the situation that the care teams had simply run out of time to complete their assessments, rather than having clear evidence of a change in FS’s needs such that they could not be met at home) then the decision taken to move him to another, unfamiliar, environment risked a traumatic process for FS that could have caused further, iatrogenic, harm.
Did the hospital or Local Authority demonstrate that they had understood, retained and weighed up the costs/benefits of a decision of a further move, to a care home, for a man with dementia versus returning to his home? Is any balancing documented, with consideration that a second change of environment could be detrimental, physically and psychologically, for him? Could any assessments required have been completed within his home environment (arguably an optimal setting, regarding familiarity and comfort), therefore representing a less restrictive option?
It is known that a move of environment for people with dementia can bring unintended, adverse consequences. This literature review from The Gerontologist in 2019 [Health Effects of the Relocation of Patients with Dementia: A Scoping Review to Inform Medical and Policy Decision-Making] states:
“The effects of relocation were discussed in terms of mortality and morbidity. In most studies, the health effects of the relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioral [sic.], and functional well-being was reported. The most recurring effect was a higher level of stress, which is more problematic for patients with dementia. In general, unless it is carefully planned, it is best to avoid changing lives of people with dementia and it is recommended to actively work to reduce their exposure to stress.”
NICE guidelines for hospital care for people with dementia acknowledge that:
“Hospital admission can trigger distress, confusion and delirium for someone with dementia. This can contribute to a decline in functioning and a reduced ability to return home to independent living. Over recent years there have been a range of initiatives on improving the experience and outcomes of hospital care for people with dementia, such as the National Dementia Action Alliance and Dementia Friendly Hospitals Charter”
And further NICE guidelines regarding discharge from hospital for people with dementia state:
“1.5.10 Ensure continuity of care for people being transferred from hospital, particularly older people who may be confused or who have dementia. For more information on continuity of care see the recommendations in section 1.4 of NICE’s guideline on patient experience in adult NHS services.”
So, it is known that a change of environment can have deleterious effects for people with dementia. Is it possible that a ‘change in [FS’s] needs’ could have been occasioned by the fact that he had been in hospital? And that a return home, to a familiar environment within the relational space of being cared for by someone who loves him, might have been helpfulwith the assessment of his potentially changing needs? I am speculating here – but we had no information of the actual concerns about FS returning home.
In the absence of any serious safeguarding concerns that explain what happened, this looks like a situation where the ‘system’ has, probably little by little, in a mission creep process, occupied an unreflective ‘doing to’ role in relation to FS and his daughter. People perhaps hadn’t reckoned on his daughter’s tenacity. Though it’s probably more likely that they didn’t really think they were doing anything wrong – ‘best interests’ as in ‘what I think is best’, in a theoretical, ‘objective’ way, rather than a legal (and inclusive) process following ‘what is best, least restrictive option, for this person, given how they have lived their life, their values and relationships’.
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin