By Amanda Hill, with contribution from Tim Sugden, 5th March 2025
The protected person (“MH”) has been diagnosed with dementia and lives in a care home. This case (COP 14214860) began as a Section 21A appeal (a Deprivation of Liberty challenge) and was initially before a district judge before it turned into a case about serious medical treatment towards the end of 2024 and was (therefore) escalated to the High Court.
For more than ten years, MH has been receiving dialysis. He currently needs haemodialysis for four hours at a time, three times per week. However, he has, over the past few months, become increasingly agitated about his treatment and consequently (say carers providing the dialysis), there is a high risk of fatality. As Mr Justice Poole put it “bluntly”, if a person in an agitated state removes the needle, they could die in under two minutes. This led to the Trust suggesting that dialysis treatment might be stopped. However, without it, the patient’s life expectancy would be very limited. According to Mr Justice Poole, dialysis is “life sustaining treatment” for MH. His young adult sons are opposing withdrawal of dialysis.
An urgent application was made and Mrs Justice Theis heard the case on 13th January 2025 but it then passed to Mr Justice Poole on 14th January 2025 (this information comes from the Transparency Order dated 13th January 2025 that I received at the hearing I observed). The Transparency Order states that the issues before the court are: (a) MH’s capacity to make decisions about haemodialysis treatment;(b) MH’s best interests in relation to haemodialysis treatment and whether this should continue (my emphasis).
This blog reports on two hearings: one I observed in person (on 27th January 2025) and one observed remotely by Tim Sugden a month later (28th February 2025). Tim emailed a Hearing Feedback Form to the Open Justice Court of Protection Project and this enabled me to follow up the case.*
What a difference a month had made.
Back in January, the judge had “good news” for MH’s two sons, who were sitting in front of me in court. Things seemed to be looking up. But at the February hearing Tim observed, funding was the predominant issue. I’ll outline first what happened in the January hearing I observed, and then quote from Tim’s feedback on the February hearing.
The January hearing
On 27th January2025, Sophia Roper was counsel for MH (via the Official Solicitor). I didn’t catch the name of Counsel for King’s College Hospital Trust, who was in the physical courtroom with me, nor that of counsel for the Local Authority, (London Borough of Lambeth), who was attending remotely.
Mr Justice Poole asked Sophia Roper to provide a summary for me as an observer, which was very helpful. I learnt that since the previous hearing, MH has had a trial of being supported to attend his dialysis sessions, including transportation from where he is living, and it has generally gone well. He is not as agitated, either during transportation or during treatment. Future sedation through covert medication was mentioned in court as a possibility, and the judge stressed that the court would have to specifically authorise that. There was general agreement that MH lacked capacity to make decisions about his medical care and that it was in his best interests to be transported to hospital to receive dialysis.
Who pays?
Supporting MH to receive treatment is labour intensive and there was a question about who was going to provide and pay for it in future. His sons have been involved but, as counsel for P pointed out, “His sons should be getting on with their education and their lives: supporting their father should not be onerous for them”. One of them has to work to support his family. She also raised the issue of who was going to provide funding. The Trust’s position was that they did not have the resources to fund support. The Local Authority had agreed some funding but it was probably not sufficient.
The judge asked for submissions from the NHS Trust, who said something that I found quite surprising. He said that he had only found out 30 minutes before the hearing that funding for support to receive treatment (from the LA) was limited to two weeks. The LA were being asked to fund one-to-one support, and the Trust hadn’t previously been aware that funding was limited. The Trust was also concerned that they would end up funding costs for the s.21A appeal, which they were not involved in.
At this the judge stated: “I hope you don’t think I am being too harsh, but it was the Trust’s decision to stop dialysis, which made it a serious medical treatment application”. When that matter is resolved the case could be transferred back to a lower tier judge.
At the end of the hearing, the judge made it clear that there were two possibilities in terms of proceedings: either “two parallel hearings” or “one matter relating to MH”. He said: “for avoidance of doubt my view is the latter; I don’t want to give a free pass for the costs to the Trust which are s.21A and not serious medical treatment but I am staying [the s.21A application]. For avoidance of doubt, all matters are before me”.
Counsel for the Trust stated that work could continue on the s.21A appeal “as long as it is earmarked as that” to which the judge replied “someone, somewhere may have to work that out”.
The two sons were in court listening and I wondered what they thought of what they were hearing. Towards the end of the hearing, the judge addressed them directly and explained in plain language what the hearing covered and what had been decided. It did make me wonder why that sort of language couldn’t have been used from the start to enable them to follow the hearing. But I know that’s not the way things are done.
The judge asked if what he had explained was clear to them and if they had any questions. One of the sons asked a question about the dialysis. The judge said: “Dialysis will continue but it depends if your father refuses or if he becomes agitated, and that’s why the Trust stopped it before…..it will have to come back to court…..will need your continued support, and professional support. As you have heard, the funding for that has not been secured, but it is life-sustaining treatment. But the funding decision is not in my hands. Dialysis will continue, and thank you for your help. One of you is next of kin, so if there are meetings, it is very important that one of you to go to those meetings”.
At the end of the hearing, the judge personally thanked “those who are acting pro bono and those who over the last 10 days have acted to move things on, including clinicians and family.”
The February hearing
I am quoting from Tim’s feedback form, as I feel it gives a perfect flavour for what happened at this next hearing. The protected person was again represented by Sophia Roper. Tim states that he couldn’t hear the names of counsel and there was no introduction so he has guessed their names. London Borough of Lambeth was represented by Ms Flanagan (?) and King’s College Hospital Trust by Ms Stanley (?), who were in court in person. The East London ICB was represented by Eliza Sharron by video link. One of the sons was in the courtroom and the other was (intermittently) on the link.
After setting out a brief background, Tim outlined what happened during the hearing:
“………In January the emphasis turned to how P could be supported to have [dialysis], including making the journeys to and from hospital.
P’s sons have stepped forward to help but the time commitment involved means that their jobs are at risk. The ICB is considering either paying one of them (compensation for his loss of earnings) to do the job of transporting and reassuring their father or (clearly the option with less chance of success) commissioning an agency carer to do so.
The discussion on funding etc etc went back and forth between the four parties for a long time. At one point the judge intervened and asked rhetorically “why should the CoP continue to hear this case?” and, at another point, “I feel like I’m becoming a referee or a go-between.” There was (somewhat vague) talk of “improving P’s mental health” so that he might become more compliant with the clinical necessity of undergoing the haemodialysis – but no-one really picked this up and proposed a course of action towards that goal.
Eventually a timetable was agreed:-
- the ICB would submit its evidence by 07.03.25, confirming whether P met their eligibility criteria for continuing funding, and if not, why not
- the local authority would submit its evidence by 18.03.25
- the Trust would submit its evidence by 24.03.25
- there would then be a Roundtable meeting around the end of March – hopefully to resolve all matters before …
- …the next hearing, which was pencilled in for 10.30am 14.04.25 – which would also deal with the s.21A issue
The judge mentioned during his closing summary, in a somewhat sad tone, that he had noticed that by then both sons had left the hearing (one from the courtroom, the other from the link), and mused whether what they had heard (in my view, the constant and repetitive back and forth / point-scoring from all the lawyers) over the previous 90 minutes or so had led to their departures. If they were in fact so disillusioned by it all that they could just take no more, compounded by the fact that they had sat through being talked about but no-one had bothered to formally address or involve them, I have to say in all honesty that I could see exactly where they were coming from.”
Final reflections
I found it depressing reading Tim’s feedback form. How sad for the sons to hear those funding arguments. I do wonder what can be done to make funding decisions easier. After all, it is all taxpayers’ money, only in different silos. Using court time to decide who pays for what doesn’t seem to be the best use of either time or money. And how are the protected person’s best interests served by that?
I hope to observe the next hearing on 14th April 2025 and will report back on what happens next.
Amanda Hill is a PhD student at the School of Journalism, Media and Culture at Cardiff University. Her research focuses on the Court of Protection, exploring family experiences, media representations and social media activism. She is on LinkedIn (here), and also on X as (@AmandaAPHill) and on Bluesky (@AmandaAPHill.bsky.social)
Tim Sugden retired in 2022, after a career in children’s services, to devote his time to providing accommodation and support to refugees from Ukraine.
* We encourage other observers, especially those who don’t want to write blogs, to complete these Hearing Observation questions too – they are massively helpful to us, as this blog post demonstrates. You can find the form on our “Observer Resources page.
Promoting Open Justice in the Court of Protection 