By Celia Kitzinger, 9th July 2022
A woman in her nineties who’s been “trapped [in a care home] by some Kafkaesque nightmare” for more than a year, has finally returned home.
The judge has yet to determine whether it’s in her best interests to stay there: this is a “trial at home” to see how it works out. But it’s been going well – despite some glitches.
Most importantly, she’s “happy” and “content” to be home – having previously been “extremely unhappy and distressed” about being compelled to live in the care home.
The story began in August 2020 when the woman at the centre of this case (T), who’d been living alone in her own flat, was admitted to hospital after a fall.
When she was ready to leave hospital, she agreed to be discharged to a care home to see if she would like it. She did not – and started asking to go home within a few weeks. She was deemed not to have capacity to make her own decision about residence and care and has remained in the care home ever since, pending the outcome of the ongoing Section S21A proceedings.
“She was placed [in the care home] by the NHS as a means of getting her out of hospital. Nobody chose this placement for her. She was put there for an assessment and then left there. It was a short-term expedient in which she’s got trapped by some Kafkaesque nightmare”. (Christine Cooper of Field Court Chambers, instructed by Amy Butler of Atkins & Palmer as T’s Accredited Legal Representative)
Section 21A proceedings were issued on 22nd April 2021 and slowly progressed through the court, eventually resulting in a direction that a “trial at home” should begin on 17th June 2022. I blogged about the two most recent hearings here:
- “What good is it making someone safer if it merely makes them miserable?” (30th May 2022 hearing)
- A section 21A hearing (3rd May 2022 hearing)
The trial at home actually started five days after it should have, on 22nd June 2022, due to the wrong type of transport having been booked for her journey home on the planned date – yet another delay in the long series of delays that has beleaguered this case.
This hearing on 7th July 2022
This hearing (COP 13744224 before DJ John Beckley on 7th July 2022) was listed, as is usual for remote hearings, as a “PRIVATE HEARING NOT OPEN TO PUBLIC” (upper case as in the listing). I mention this because most members of the public, not surprisingly, think this wording means we’re not allowed to observe hearings, and so don’t ask. It doesn’t mean that at all – and the wording has a chilling effect on open justice. I am in discussion with Her Majesty’s Court and Tribunal Service (and the relevant judge) about how this can be fixed. For more information about why this misleading wording is used, see my blog here: “Why are so many Court of Protection hearings labelled “PRIVATE”. As usual for hearings so designated, I was admitted without anyone suggesting that I could not be.
At this hearing, no party disputed that it was in T’s best interests for the trial of living at home to continue.
This was a relief after the submissions from the Local Authority (then represented by Thomas Boden) at the last hearing. They had argued that it would be “too great a risk to be borne” and “reckless” for T to move home, because“ it may leave some of T’s basic needs unmet”.
One of the local authority concerns was the proper management of T’s diabetes: they wanted more time to ensure that T’s blood glucose monitoring would be done correctly at home, and that carers would have appropriate training and experience. In fact, this seems not to have been a problem at all. Counsel reported that “the nursing team say that in terms of diabetes care, things are going well. They are able to take readings, and she’s not objecting – they say there’s ‘implied consent’, so she’s holding her finger up so they can do the test, and lifting her skirt so they can inject her” (Lucy Lodewhyke, representing what used to be the Clinical Commissioning Group (CCG), now the Integrated Care Board (ICB)). The district nurses were praised by T’s friend (and Health and Welfare Attorney), M, who said they were “really very helpful and very supportive with me. They come on time and wait for her to be okay when the sugar level is on the boarder. They gave me their telephone number so I can be in touch with them. I’ve very pleased with them, and I’m very grateful”.
Another local authority concern was related to mobility issues in T’s home, including “transfer” between seating and standing positions and using the toilet, as well as entering and leaving the flat (there are steps). At this hearing, now that T has returned home, here was no mention of any mobility difficulties inside the home (although apparently a chair lift is going to be fitted), but I got the impression (it wasn’t explicitly stated) that T has not been able to leave her home since returning there. This was implied by M (T’s close friend and Health and Welfare Attorney) who reported that:
“T has been sitting in the window looking out and luckily for me, for us, it’s been raining and windy and there has been nobody in the street – her home is on a cul de sac – so we are telling her it is too cold and too raining to go out. She’s content. She’s playing cards, watching TV, listening to music.”
While we were in the virtual courtroom waiting for the hearing to begin, there was a discussion between counsel about how to get hold of a wheelchair as quickly as possible Carol Knotts, representing the local authority, said she had family experience with the Red Cross wheelchair service.
A third concern raised by the local authority at the last hearing related to provision of care. The local authority asked for (but I think did not get) assurances that a second nominal carer would be identified in case of the illness of the nominated live-in carer. This last concern turns out to have been prescient, since the mother of T’s live-in carer has become ill and T’s carer wants to return home to her country of origin to visit her. She and M thought they had successfully arranged cover with a former colleague of the live-in carer, but have run into difficulties because this colleague is not a UK-national, but comes from the same (EU) country of origin as T, M and the live-in carer. She has no UK bank account or national insurance number. The local authority was clearly not being obstructive in raising a concern about this. Rather as counsel said, “this raises questions for the local authority in relation to the legality of that person working in the UK. All the local authority is seeking to ensure is that the employment laws of this country are complied with”. As the judge pointed out, “Pre-Brexit it would have been fine for [an EU] national to come and work in this country…”. (I think it’s still possible with a “Health and Care Worker Visa”, but the website says it takes 3 weeks to get a decision after submitting a visa application, so I doubt that will work for T’s live-in carer). The current live-in carer has delayed leaving to see her mother (“She’s saying she can’t abandon T” , said M). It’s unfortunate that there wasn’t a nominated second carer in place, thereby avoiding these last-minute emergency decisions. “Please God, fingers crossed, her mother doesn’t get worse”, said M. “We are still looking for someone to cover for her”. If cover is not found, then M and T’s other friends will step in to fill the gap (as they had previously promised).
At the time of the hearing, T was actually in hospital being treated for a urinary tract infection (she’s incontinent which increases her risk of UTIs). This was described by M (not a first-language English speaker) as “a little stone in the way” of the otherwise generally positive experience of T’s return home. She said, with obvious affection, that she’d visited T recently and found her “fully awake and getting better”: “today she said she’s hungry and why they are not feeding her? The doctor laughed and said, ‘okay, order some breakfast for her’. She’s saying she wants to go home again, because in the hospital they don’t treat her properly, she says”. She’ll be discharged soon: “the doctor said maybe keep her today and then tomorrow do another test. If she’s still infected, they will keep her another couple of days”.
The biggest obstacle at the moment to T remaining in her own home is financial.
Counsel for T (Christine Cooper) raised a raft of financial issues that needed to be resolved
(1) Direct payments
The local authority has not yet confirmed that the shortfall paid by T for her live-in carer is “disability related expenditure”. She said, “Direct payments are capped at the level the local authority would pay for a residential care-home, but subject to a contribution based on ability to pay. If the local authority sees the shortfall as disability-related, T doesn’t have to pay it. If they don’t, she does – for T it’s about £100 per week – and that has implications for the financial viability of care at home. […]. It seems to me an unanswerable case that paying a carer to deliver the care that is in your care plan is ‘disability-related care’.”
Judge: Who arbitrates on the question if the local authority were to consider it’s not disability-related, and obviously T and those representing her say that it is?
Cooper: If the local authority decision appears wrong as a matter of law, this court would be asked to authorise a judicial review on T’s behalf. One hopes the local authority will take account of the most recent case law and it won’t come to that. But the point is that it’s not a quick process and can’t be left to the last minute.
(2) The amount the local authority will pay for her placement from the date upon which her assets (other than her home) fell below the upper capital threshold and the date upon which that occurred
The local authority accepted (in a statement on 24th May 2022) that T was a temporary resident in the care home pending the determination by the court as to whether she should return home. Until then, it had treated her as a permanent care home resident. Initially T’s placement was funded by the NHS under the discharge to assess policy, but that funding ended in December 2020 when the continuing healthcare assessment was completed – and since then M has paid the care home from T’s savings, until they were depleted. Because it treated T as a permanent resident, when her savings were exhausted the local authority expected T to sell her home, or enter into a deferred payment agreement, to pay the care home. The position of T’s counsel is that T was a temporary resident and that the local authority should have started to provide funding when her other assets (i.e. excluding the property) fell below the upper capital threshold of £23,250. (For information about care home fees, click here).
(3) Reimbursement for T
Counsel for T said a decision was needed “on how much the local authority should reimburse T for the care she paid for when it was treating her as a self-funder, rather than as a temporary resident”. I understand that the local authority has indicated that the care home T was in was more expensive than its usual rate (it charges £1,312 per week) and it intends to limit any reimbursement to its usual (lower) rate: “but we say they didn’t offer her an alternative placement that was within their usual rate, so therefore they’re going to have to reimburse the whole cost”. Again, this is a significant decision for T because: “if the local authority apply the law in the way we think it should be applied, it does look as though living at home could be a viable option, and the court could decide that remaining at home is in T’s best interests. But our concern is that she gets to the end of the trial and is in the situation of being at home with a carer who can’t be paid [… ] and it all collapses for reasons that shouldn’t have had any impact on it.”
(4) Funding to extend the trial – and for long-term care at home if the trial is successful
The local authority has agreed to fund the 4-week trial, but there is no decision about funding after that.
The judge said: “If the local authority makes the decision that it’s not financially feasible for the trial to run beyond the four weeks originally agreed, T would be returned to the care home, on 2-days notice, on the Monday. That’s not a good position to put T in”.
I haven’t seen a copy of either the draft order or the final order, but my understanding (based on what was discussed in court) is that the judge directed the local authority to make a decision about whether or not it’s going to continue to provide the direct payments that T needs for the trial to continue within seven days (so by 15th July 2022). If the local authority decides not to continue the payments, then T’s counsel is authorised to investigate the merits of an urgent application for judicial review.
He also directed the local authority to make and communicate decisions about the disability-related payments and reimbursements by 18th July 2022. Those decisions are needed before the final hearing, because the judge can’t make a best interests decision for T to return home without knowing that it’s an available (i.e, affordable) option.
The judge asked for an emergency application to be submitted for the day he returns from vacation (3pm on 19th July 2022) if those decisions have not been made and communicated or if the local authority declines to provide any more funding for T’s trial at home.
Otherwise, the trial of living at home will continue to run (if everything goes smoothly) until the final hearing, listed for 10.30am on Wednesday 31st August 2022. This will be an in-person hearing in First Avenue House in London, with oral evidence from M and from the local authority.
The CCG (now ICB) asked to be discharged as a party (saying that it has no responsibility in relation to this patient) and there was some disagreement about whether it was necessary and proportionate for them remain as a party in relation to “some unidentified and speculative risk that we don’t know anything about and may never transpire”. The judge directed they should stay as a party but excused their attendance at future hearings (unless he received seven days notice from another party setting out their reasons as to why the CCG/ICB should attend).
There were some challenges in fixing the date for the final hearing and unfortunately Christine Cooper (T’s counsel via her ALR) has said she won’t be able to act for T on this occasion, so there will be a different barrister for T in her place. Whoever takes over from Ms Cooper has a hard act to follow: she’s crisp, incisive, clear, utterly committed to her client, and skilful in her presentation of forceful arguments – certainly someone I’d like to advocate for me if I were ever in T’s position!
I hope T is discharged from hospital soon and gets to enjoy her time at home between now and the end of August.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @kitzingercelia