Dietary Restrictions, aggression, and a placement in jeopardy (plus transparency matters)

By Celia Kitzinger, 2nd September 2022

The protected party (P) has been discharged to his own property with a care package after what the judge described as “a very long period” in hospital – but things aren’t going well.  

He’s “aggressive”.  He “shouts at the care staff on almost a continuous basis and is abusive, intimidating and threatening towards them”, including raising his fists, and using his wheelchair to block staff exits from rooms when they attempt to remove themselves.  Staff have even resorted to calling the police at night due to concerns about their own safety.  His “anti-social” behaviour has been displayed in public, and the police have asked to be notified when this happens.

Much of the problem seems to revolve around the “diet management plan” which means that P is denied food he wants to eat.  He’s “extremely unhappy” about the dietary restrictions in place and becomes “stressed and angry” when not provided with the food he asks for.

As a consequence of his behaviour, carers have resigned, agency staff are refusing to work with him, and P’s living arrangement is at risk of collapse.  

The hearing

The case (COP 13710521) was heard remotely via video before Her Honour Judge Catherine Howells sitting at Wrexham County Court on Friday 19th August 2022.

There were three barristers in court:  Mark Bradshaw of No. 5 Barristers Chambers representing P (via his litigation friend the Official Solicitor); Thomas Jones of 9 Gough Chambers,  representing Betsi Cadwaladr University Health Board; and Hannah Haines of  Nine St John Street, representing the Local Authority  – all with their instructing solicitors, one of whom, Rebecca Humphreys of Julie Burton Law, was formerly P’s Accredited Legal Representative (ALR) until things became complicated and the Official Solicitor took over as P’s litigation friend).  

The protected party, P, was also attending –  seated (generally calmly) in his wheelchair in his new home, obviously attentive and responsive to what was going on in court.  He’s a big, heavy-set (older) man and I could well imagine how intimidating he must be to staff if he’s aggressive towards them.  

I don’t know what diagnosis (or “impairment of, or … disturbance in the functioning of, the mind or brain” s. 2(1) Mental Capacity Act 2005) has caused him to be unable to make certain decisions for himself (I wish this information was routinely included in opening summaries) but the court had been sent a capacity assessment showing that he lacks capacity to make decisions about his diet.  He also lacks capacity to conduct these proceedings – hence the appointment of the Official Solicitor – and must have been deemed to lack capacity to make decisions about residence and care, since he has been deprived of his liberty under a standard authorisation.  He has been assessed as having capacity to manage his everyday finances and welfare benefits (more on this later).

HHJ Howells summarised the history of the case, saying that it began as a s.21A challenge (and I think it had been agreed that it was continuing as a s.16 health and welfare issue). 

Since August 2000, P has been deprived of his liberty in hospital.

Since I’ve been involved in the case,” she said, “there’s been active management, with hearings almost once a month, and it is to the credit of everyone involved that P has moved into his own home.  The hearing today was listed to check on his progress.”[1]

P had finally moved out of hospital and into his new property on 25th July 2022.

It was already apparent from the paperwork before the court that  (as counsel for the local authority, Hannah Haines put it), “things haven’t gone as smoothly as everyone hoped and anticipated”.  

The judge described the situation tactfully: “It’s not unexpected that after such a long period in hospital, things haven’t gone as smoothly as one might hope in terms of him moving into his own home [… ] So now he’s at home with a team of carers, it’s the responsibility of the court to ensure it can be sustained”.

The judge acknowledged P’s presence in court, said she’d met him previously in person when he was in hospital, and that it was “a real pleasure” to meet him again.  She addressed him directly to say “I’m still awaiting that photo of you having a cup of tea in your own home which you promised me”.  He smiled, apparently pleased to see the judge again, and responding positively to her warmth and engagement with him.

Counsel for the Local Authority: Hannah Haines

Counsel for the Local Authority said they were “disappointed” to be in the situation “where so many of the care team have left working for P, because they are finding his behaviour so challenging, both because of the way to speaks to them and because of the threatening behaviour.  We are now down to 3 out of the original 9 carers – though some left sooner and it wasn’t do with P specifically, they just had decided to leave for their own reasons.  Three carers seem to be left.  There are real issues in retaining even agency staff because of the challenging behaviour they’ve experienced from P when they’ve taken shifts and worked with him.  So, the very unfortunate reality is that the placement is left in a very perilous situation.

She said that 24 hour 2:1 care (as specified in his care plan) “simply isn’t possible”.  When P’s former ALR visited P recently, he was in bed because only one carer was present, and he’s been risk assessed as needing two carers to use the hoist to get him out of bed.

The manager of the care agency “has been assisting where she can, and taking on shifts as well when they don’t have enough carers available, but she can’t do that indefinitely as it’s not her role and she has other responsibilities”.

Counsel said that there are “not enough carers to provide even the most basic care to P and this placement simply isn’t going to be able to continue. We are looking at contingency options. The Local Authority is going to, unfortunately, have to come up with a crisis plan for if he’s left in a situation with insufficient carers to attend to his basic needs and he has to move somewhere else to ensure he’s cared for in a safe environment.

At this point the judge intervened to say “I can see P is becoming increasingly upset and finding it very difficult to listen to this”.  He seemed to be in tears.  The judge suggested that he was free to absent himself and to “return at any time”. He wheeled himself out of the room (returning – with the help of two carers, briefly visible on screen –  in a more composed state about ten minutes later).

Counsel said: “There had been some discussion about how frank the Local Authority should be. Everyone understands how much P wanted to leave hospital and go to this placement, and how much he’s invested in this placement, but we thought it important he should understand the situation”.

It had apparently not been easy to find the current placement: the judge reminded everyone that “we looked for many months for step-downs and alternatives and found no other placement available that could accommodate P”.

The issue of the diet management plan was then addressed.

Counsel for LA: One of the real triggers for P is around his diet.  Unfortunately, the dieticians who’ve devised the plan for P are currently away on leave, so it will be a few weeks before they can do any amended diet plan, or look at whether that’s even a possibility.  If matters surrounding the diet are really causing significant issues, then even a few steps to amend the diet plan may assist to calm the situation down.

Judge: Diet appears to be a significant trigger. It’s disappointing that those who might be able to address it aren’t available at the moment.  Obviously, if we can deal with that head-on, it might take some of the pressure off.

Counsel for LA: Yes. That was discussed at the pre-hearing discussion. Even leaving it another couple of weeks until the dieticians who know P best are back may unfortunately be too long to rectify the situation and keep this placement up and running.  We would be grateful if someone could make some tweaks on an interim basis.  We acknowledge, though, that diet is not the only issue.  There are district nursing issues – he isn’t willing to let some of the steps be taken to avoid deterioration to his legs and skin.

Judge:  When P was in hospital for the best part of two years, I don’t remember any unwillingness from P to have personal care and the like.  I’m just wondering what’s changed since he’s been in his own home. 

Counsel for LA: I don’t have the details. I understand from [name] that one of P’s behaviours, which is unwillingness to be turned at night (to try to relieve some of the pressure areas) was certainly present in hospital. It was those issues, and the breakdown in relationship with carers, that led to breakdown of skin, which led to the admission in August 2020. So, everyone is keen to avoid the same situation which led to admission from coming back around and repeating itself[2].  If I may highlight another aspect: he’s refused to have male carers, so restricting the pool of possible carers to only female carers.

Counsel for the Health Board: Thomas Jones

Counsel for the Health Board began by emphasising the importance of the weight management plan “that ensures his weight remains stable”.

The judge drew attention to the fact of P’s weight loss while still in hospital.  “It’s to his credit that he’s lost, well about a quarter of his body weight, 25 kilos”.

It is to his credit that he managed this while in hospital,” said counsel, “and important he sticks with it so he can lead the more active life he’s now leading, because now he is able to use his wheelchair”.

The judge affirmed (I think for P’s benefit, as he was now back in court) that P’s weight had caused him difficulties because “he couldn’t use his chair and couldn’t access the community.  He’s done so well in losing weight he can now use the wheelchair – and in fact he went to the cinema recently – the first time in 15 years he’s been able to do that!”.  While she was speaking, P nodded and smiled. He seemed to appreciate her praise.

Counsel for the Health Board: That is the reason for the possibly rigid position the Health Board is taking on his physical health, relating to his psychological well-being and his dignity.  There are exceptions to the plan that can be dealt with on an ad hoc basis.  Recently he enjoyed popcorn, which wasn’t something on the plan.

Judge:  I understand it was Skinny Popcorn – something I know about.  But it’s still tasty, and it does its job!

P:  (Smiles and laughs)

Concerned about the delay before the dieticians’ return and the formal review planned for 30th August,  the judge asked when the request was made to the diet management team to look at the issue. Counsel didn’t know, but it transpired that the diet had last been reviewed on 12th August and the Health Board was willing to make an undertaking today to send a member of the team to visit P with a view to “relaxing elements of the diet plan ahead of formal review on 30th August”.  

Counsel also referred to planned work with P from the behavioural support team, staff resilience training, and “direct work with P about the impact that his behaviours have on staff”.  There will also, he said, be a VARM meeting.

The judge asked to be reminded what VARM stands for (“Vulnerable Adults Risk Management”) and then confessed:  “I don’t need to be reminded – I don’t know what it means!).  

Counsel for P (via the Official Solicitor): Mark Bradshaw

Counsel for P reported that P’s wishes and feelings were to remain at his current home.  

Counsel for P: He accepts he’s shown anger – perhaps not that he’s been abusive.  He’s raised the possibility of a befriender, to give him a little time away from carers and have that privacy and time apart that he seeks.  Certainly, from what he’s said to [his Accredited Legal Representative], he is aware of the problems that his behaviours are causing – though of course, he’s been assessed as someone who lacks capacity to make decisions about care and residence, so I’m a little guarded in saying that.

Judge:  In the moment, he probably very much regrets any behaviour that has upset anybody, but it isn’t always easy for him to control that behaviour.  That’s the picture that’s been painted for me.

Counsel for P: Diet is perhaps not the whole issue, but it dominates P’s thoughts […] There may be scope to make small changes that, for P, could make a real difference to his day.  Of course, there may need to be a different balance struck when one considers his best interests globally – between diet and the need to manage his weight, and the impact that a move would have on him.  It may be that a slightly different approach to weight management may be necessary, as opposed to his losing his home.  We would invite the professionals to look at the bigger picture.  In saying that, I recognise that of course if his weight were to increase so that the wheelchair became no longer usable, the placement would be in jeopardy for that reason alone, so it is a question of looking at the bigger picture. 

Finances

The court then addressed the question of P’s representation in future hearings.  

The s.21A challenge has come to an end, and, with it, P’s access to non-means-tested legal aid.  It’s unlikely that he would qualify for means-tested legal aid.  This means that he would need to pay out of his own finances for legal representation at future hearings.

P has previously been assessed as having capacity to manage his finances, but as lacking capacity to conduct these proceedings.  He has declined to fund solicitors and counsel for this hearing.  The Health Board and the Local Authority jointly funded P’s counsel’s fee for this hearing and his solicitor acted pro bono (i.e. without pay).  It doesn’t seem that this is a sustainable position, and discussions are underway concerning proposals for future funding at least to the next hearing. 

The Official Solicitor’s position is that “decisions about funding the costs of legal representation in proceedings are an aspect of the conduct of those proceedings, such that a declaration that P lacks capacity to conduct proceedings provides, in theory, a proper basis for the making of best interests decisions as to the funding of P’s representation in those proceedings from his or her estate”.  In practice, however, where (as here) P has the day-to-day management of his own property and affairs, and is not likely to be willing voluntarily to make the necessary payments, there are likely to be “very considerable – and often insuperable – difficulties in accessing P’s funds for these purposes”.  

Counsel for P expressly drew attention to the work done by Rebecca Humphreys, P’s solicitor and former ALR, who is “acting pro bono, not being paid today.”  He paid tribute to “her personal and professional commitment”.  The rapport built up between P and this solicitor has provided (he said)  “opportunities for candour from P to this court”, and her good relationship with P enables her to make valuable contributions to this case. 

The judge remarked that: “The court has been greatly assisted by P having representation, especially against a background where arguably, and I say no more than that, there were failings in discharging P for many months”.

Next hearing and closing summary

There was some brief discussion of whether or not the case needed to come back to court if an urgent move was required (i.e. if the current placement broke down before the next hearing) – it was agreed it should unless it was an absolute emergency – and the judge said that although she’s on annual leave for the next week or so, she was sure she could fit it in during her vacation if necessary.

Since her listings were full on returning from annual leave, the judge offered to list the next hearing “in antisocial hours, with the agreement of the parties”.  This turned out to mean slotting it in early in the morning or during the lunch hour, and after some juggling with everyone’s calendars, it was listed for 1pm on 9thSeptember 2022 for an hour.

The judge ended the hearing by saying she’d “sum up where we’re at”.  This seemed to be very much for P’s benefit, and part of the summary was explicitly addressed to P.

The case, she said, has “a long and difficult history, and everyone has worked long and hard – including P – to get P into his own home.”

Judge:  Unfortunately, things haven’t gone smoothly and a number of the care team have left, and they say they’ve left – and I’m not judging anyone for this –  because of the way P has spoken to them, or behaved to them.  P recognises that he might have spoken to them in an angry way because he’s been angry or frustrated.  If the care team breaks down, people will be applying for him to move back into hospital or into residential care.  I know that the situation is challenging because of the diet plan – you’ve done really well, P, and should be congratulated for that.  Stick with it, and the diet plan will be reviewed when the dieticians come back from holiday.  It’s very easy for me to say it’s for your own good – but it means you can use your wheelchair and get out into the community and do things.  I know it’s hard when you feel hungry, but I’ve got to balance that against you being well.  However difficult it is, try not to take out your upset on the people who are trying to help you.  One last thing: you said you had a lovely Mam who looked after you and you said your lovely Mam would be upset if she saw you being angry with people.  I am very keen, P, that this works for you.  It would be such a shame if it doesn’t.  But you need to understand that this is really serious. If you can’t have carers at home, you might not be able to stay at home.  So well done for achieving what you have so far – but keep at it!  P, I know today has been difficult for you, and I know it’s hard to hear people say things.  I’m going to give you your usual sign – thumbs up! (and she made a thumbs-up gesture).”

Reflections

More than in any other hearing I’ve observed, this judge radiated warmth and affection towards P, and he engaged very positively with her, responding well to her empathy.  This was quite striking in the context of a hearing that focused on P’s “behavioural problems” and his aggression towards staff.  Counsel for P had suggested that “the court may well wish to reinforce to P the perilous nature of his situation when he attends remotely for this hearing”, and the judge achieved this (I think) in the nicest way possible.  What came across, at least for me, was her unswerving support for P to remain in his own home, if only that can be achieved.  

The diet of protected parties – eating too much, or too little, or the wrong kind of food  – has come up in quite a high proportion of the hearings I’ve observed.  Obviously it’s at the centre of the anorexia cases, and hearings concerning “hunger strikers”.  One case I observed concerned a young man with  Prader-Willi syndrome (a rare condition causing a near-permanent state of hunger and an extreme drive to consume food). Questions about provision of clinically assisted nutrition and hydration for people who can’t take food orally raise some of the most serious life-and-death decisions the court has to deal with.   But what P does or doesn’t eat is also a matter for the court in much more ‘ordinary’ cases when there are diagnoses of diabetes, or food allergies or intolerances; when P is at risk of eating out-of-date or rotting food; when P’s ability to prepare food for themselves (safely) is at issue; or when family or professionals supply P with the ‘wrong’ food (e.g. regular pasta when P is supposed to be on a gluten-free diet; chicken soup for a vegetarian; pork for an orthodox Jew).   

The issue of food is particularly challenging when (as in this case) it leads to overt conflict between P and those caring for P.  There is something fundamental about choosing what food to put (and not to put) into your mouth, that most of us take for granted as adults. It feels somewhat Orwellian to be denied food on the grounds that it’s not in our best interests to eat it.  A few years back, the world’s first vending machine with facial recognition technology was unveiled, with the potential to refuse to vend a certain product based on a shopper’s age, medical record or dietary requirements (The vending machine of the future is here, and it knows who you are).  Despite the potential health benefits, it hasn’t caught on. 

Most capacitous adults would probably acknowledge that we often make “unwise decisions” about the food we choose to eat. 

But once we’re deemed to lack capacity to make those choices, then we are provided only with food that others decide is in our best interests. 

The problem for P in this case is that – insofar as his ‘best interests’ are defined with reference to his wishes and feelings – he is pulled in two different directions.  He 

wants two incompatible things: to eat as he chooses (which will mean he gains weight) and to “access the community”, which he can’t do if he gains weight such he can’t use his wheelchair to go out.  That’s what the court is having to struggle with here.

Transparency Matters

Few people, casting an eye over the hearings listed in CourtServe for 19th August 2022, would have picked this hearing as one to observe. Here’s how it  (and another before the same judge) were listed:

From CourtServe

Features of this listing that act to deter most potential observers are: 

  • Both say “restricted” (not “in public” or “in open court” as for some other hearings), which implies we might not be allowed to observe (although I know that in fact it doesn’t actually means that).
  • The first (the one I’m reporting on here) is listed for 9am, which poses particular challenges when lists only appear the afternoon before the hearing and we generally see them after working hours. If an email is sent after 5pm the day before a 9am hearing, there’s no time for court staff to process our requests: statistically (based on my own records) we’re much less likely to gain access to hearings before 10am compared with hearings later in the day.
  • There’s no information at all as to what these hearings are about (or the type of hearings they are), so they are unlikely to attract the interest of other observers, who usually have specific interests in (say) deputyships, or s.21A, or serious medical treatment cases, and a preference for ‘final’ hearings over ‘directions’ or ‘case management’ hearings.
  • It doesn’t say whether they are remote (i.e. via phone/video)  or in person – so there’s a fair chance that the effort of enquiry would come to naught for anyone not in or near Wrexham, as we’d only be able to attend in person (which for me would involve a drive of two and a half hours).

Faced with this level of deterrence, my commitment to open justice kicked in.  

So I wrote to the court as soon as I saw the listing at 18.19 on Thursday 18th August the day before the hearings, asking to observe the 9am hearing.  I pointed out that “I realise it may be in person, but it doesn’t say one way or the other” (and also provided my phone number in case it was remote, but by telephone rather than video). I added: “Could you also let me know please whether HHJ Howell’s 11am hearing is in person/hybrid/remote” and “Neither the 9am hearing nor the 11am hearing has any information or ‘descriptors’  about the issues before the court. Are you able to advise please?

I didn’t hold out much hope for the 9am hearing.  

Since I hadn’t received a reply, I resent my original email at 8.47am the following morning (i.e. 13 minutes before the hearing was due to start).  

I was stunned to receive an email from the court staff at 8.51, informing me that “both hearings are by Teams and both applications are dealing with the issue of where P should live.  The Judge’s clerk will be sending you the hearing link shortly”.  And at 8.52, I received the link!  (I also received the link for the 11am hearing, at 9.11am, although I hadn’t actually asked for it!). A big thank you for the court staff (and I suspect the judge’s) timely and very efficient work on behalf of open justice!  

Less positively, in neither hearing was any detail provided about the reporting restrictions, and nor had I been sent Transparency Orders (TOs) – the injunctions containing the list of “the Information” that cannot be made public in relation to any given hearing.  I actively pursued both TOs over the course of several days and 8 emails (to lawyers, their clerks, and to court staff) – finally receiving the TO for the 9am hearing on the afternoon of Tuesday 23rd August (i.e., about two and a half working days after observing the hearing).  I still haven’t received the TO for the 11am hearing, although a private message to a participating lawyer on LinkedIn has led to a promise (at 8.32 on 27th August) to “look in to getting a Transparency Order for you”. 

It really shouldn’t be this hard to get the court to issue an injunction against us – it’s what they’re supposed to do! 

tweeted about this experience – and there was some discussion, as below. 

These exchanges summarise key problems with the way transparency is – and is not – working at the moment.  Given the severe and very obvious under-resourcing of the courts, I (like Julie Doughty) am also “surprised anything is working at all”. My awareness of the additional pressure open justice is putting on people in the courts who are already desperately overworked is, of course, sometimes another deterrent to the pursuit of transparency – but one I overcame in this case.

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia


[1] We are not allowed to audio-record court hearings, so quotations from the hearings are based on contemporaneous touch-typed notes which are as accurate as I can make them but unlikely to be entirely verbatim.  The quotes from the opening paragraph are taken from the parties’ Position Statements: I am very grateful to the lawyers involved for sending me these.

[2] The same point is made in Counsel’s position statement, as follows: “The Court may recall that P’s recent long-term admission to hospital was caused by him developing bilateral leg cellulitis due to chronic lymphedema and leg ulcers, as a result of a breakdown in the provision of care at home.  P had previously lived at home with packages of care for some years, however previous care packages had been terminated by the providers due to his aggressive behaviour. The Local Authority is sure that all parties are keen to avoid this situation being repeated when such time, effort and money has been put into making this placement successful. It is hoped that a further emergency admission to hospital can be avoided but if the placement rapidly becomes untenable then this may become the only option whilst another placement is identified”.

One thought on “Dietary Restrictions, aggression, and a placement in jeopardy (plus transparency matters)

  1. Thank you – very thought provoking

    On Fri, 2 Sept 2022, 07:33 Promoting Open Justice in the Court of

    Like

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