By Jenny Kitzinger, 16th December 2020
The hearing I attended on Wednesday 9th December 2020 (Case: 13382192 before District Judge Tindal), was about Mr G, an individual in his early 60s with frontal lobe disorder, diabetes and other medical issues. He wants to leave the acquired brain injury [ABI] care centre that he originally entered almost a year ago, to return to living in the community – but has previously been deemed to lack capacity to make a decision about this for himself.
This December hearing is the third I’ve observed concerning Mr G. I blogged about a previous hearing in July 2020 and another in October 2020. This latest hearing was supposed to be the point at which a decision about where Mr G might live could finally be made.
Sadly, this didn’t happen. It wasn’t possible to make a decision due to problems with progressing specific plans to put viable options on the table. This means that Mr G has to stay where he is – at least until the next hearing in February 2021. He expressed his disappointment and dissatisfaction with the process:
“My case is being kicked around from one party to another. Recurrently people who are meant to do a certain action have failed to do so. I’ve been here almost a year and the core principle – which is my well-being – may have been lost.”
He referred back to a comment made by the judge in opening the hearing, and said:
“In the commentary you delivered you mention an “unseemly turf war”. That seems an apposite description of what’s going on here. The only people aside from my solicitor and barrister who’ve behaved with any dignity, any care – assets you might look for in a clinical setting – are the small but willing team in this place [ABI care centre] who’ve always treated me with dignity and respect. Everyone else has kicked me around like I’m an object. Which I am not. I am not going to give up. My life is ticking away in real time. I need action, by you, Your Honour, to return me to the life I’ve been deprived of”.
Mr G’s sense of frustration was echoed by the judge, Judge Jim Tindal. The hearing concluded with another hearing being scheduled for February 2021, in the expectation that all the necessary information and options should be in place by then. The judge intimated that at the February hearing he would need to choose between available options come what may, and that would include the possibility of a return to living in the community (while not guaranteeing that outcome):
“Even though I don’t have entire comfort in statutory agents doing what they should, I might make a decision nonetheless, providing a fait accompli to the NHS. I will not be prevented from making that decision by excuses.”
Addressing Mr G, he said: “I can’t promise that I will make that decision [to allow a return to living in the community] but I will make my decision with your views at the centre of the decision-making process”.
So, what had gone wrong?
The reason why all the information necessary to consider alternative placements was not available at this hearing was clearly linked to a lack of coordinated care.
There was a dispute between the Local Authority and the CCG about whether Mr G was eligible for Continuing Health Care (CHC) funding. The CCG’s position is that the person responsible for Mr G’s care is his GP. The Local Authority’s view is that Mr G’s needs are primarily health related. The Local Authority has completed a CHC check list and is awaiting the outcome of that process. The lack of CHC funding meant that Mr G had not been assigned a care coordinator who might ensure that all the relevant medical care and paperwork was in place, and various things had fallen through the gaps. In particular the pain clinic, which it had been hoped would set him up with a trial of pain patches which might facilitate his return to the community, had failed to do this. A parallel problem delaying consideration of the options for Mr G was that probate was still not complete in relation to his mother’s flat where he hopes to live.
Alexis Hearnden, representing Mr G via the Official Solicitor, commented that it was: “very unsatisfactory that there is not someone at the reins of all this” and underlined the point that disputes about who is responsible for funding should not impact on the care of the person in question. There was, she said, a need for a collaborative, not piecemeal, approach.
Much of the hearing was taken up with trying to put in place various strategies to ensure that the multiple statutory bodies could be brought together to establish such a collaborative approach. There was also discussion of whether joined-up thinking might harness litigation to expedite probate and consideration about whether to use Section 49 to ensure the right information was available at the next hearing (see also PD14 – https://www.judiciary.uk/wp-content/uploads/2014/05/pd-14e-section-49-reports.pdf).
The problems highlighted in this hearing are familiar to anyone trying to support an individual who lacks capacity to make their own decisions about where they live or the treatment they receive. There was a great deal of determination in the hearing (among the half dozen senior professionals present) to try to solve the problems, but it struck me how relatively powerless even they felt to resolve the situation in a timely way. This is in spite of the fact that, time and time again, judges have been critical of turf wars, and of the lack of coordination and unnecessary delays that are inimical to high quality best interests decision-making.
In the cases that I’ve observed, the judges are usually clear about not overstepping their powers and not ‘brow-beating’ or blaming anyone, but I’m left wondering what is happening to the huge pool of information collated through such hearings about breakdowns in care or inherent system problems. If such hearings cannot help deliver systemic changes, then hours of court time spent on individual cases on a case-by-case basis seem a problematic use of resources that might be better used directly addressing gaps for all – including the majority who cannot harness litigation to address their situation.
This hearing underlined for me the urgent need to reform the way in which care is funded and to ensure that care coordinators are available to all who need them.
Meanwhile, Mr G remains in a placement which he resents, without the possibility of alternatives being considered. And thousands of others battle with similar situations which undermine best interests, waste financial resources, and cause frustration and distress for the individuals at the centre of each case – and for the families and healthcare professionals supporting them.
Jenny Kitzinger is a Professor in the School of Journalism, Media and Culture at Cardiff University, where she also co-directs (with Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre. She tweets @JennyKitzinger