Treatment delay: “My son has got disabilities but that doesn’t mean he’s a nobody”

By Celia Kitzinger, 27th May 2022

A man in his 20s is losing his sight.  

The Trust thinks it’s likely that he’s developed cataracts and that this could be easily treated.  

His mother worries that it’s something more serious and has told the lawyers that her son’s birth father had a tumour behind his eye when he was in his 20s.

Proper investigation and treatment is needed – but although “in the usual course of events this would be straightforward”, it’s more complicated for this patient – and there seems to have been a delay of more than a year. 

I was watching a remote hearing before Mr Justice MacDonald (COP 13930317) sitting as a Court of Protection judge in the Royal Courts of Justice on 25th May 2022.  This case was in the “Urgent Hearings” list[1]

The applicant Hospital Trust was represented by Conrad Hallin of Serjeants’ Inn Chambers. Asked by the judge to introduce the case[2], he said that P has “severe learning disabilities, autism and ADHD”.  He said P “was born prematurely, was on oxygen for 18 months and had a stroke affecting the left side of his brain”.

Although, for most people, cataract surgery (if that’s what’s needed) is a straight-forward procedure, “given P’s presentation, it needs careful planning”.  He gave a brief description of some of the issues involved (e.g., giving a long-term steroid injection rather than reliance on eye drops post-operatively), although these are “still to be planned in detail”.  He envisaged “lots of other evidence” about the procedure being provided “after questions from the Official Solicitor and the CCG”. The draft order – part of which was read out in court – mentions physical restraint and sedation.

The judge intervened at this point to ask whether it was correct, as appeared from the papers, that there was “quite a long gap” between a best interests meeting for P at which this was discussed back in April 2021 and the follow-up best interests meeting “almost a year later” at the end of March 2022.  Perhaps, he enquired, this was a typo?  If not, “is there any particular reason why now, over a year later, this is a topic of discussion rather than action?

Counsel for the Hospital Trust confirmed that it was “not a typo”.  The patient had been referred to his GP about his sight loss in March 2021.  “We haven’t arrived at this position for a long time”. 

This speaks to the need, now, to keep a tight rein on the timescale”, said the judge.

The Trust representative agreed and said that 24th June 2022 had been fixed for an investigation (which was why the case was in the urgent hearings list, so that the relevant orders and declarations from the judge would be in place before then to allow the procedures to take place lawfully).

That will be 14 months since the best interests meeting at which it was decided that it would be in P’s best interests to carry out investigation and treatment for his sight loss. 

P’s mother was in court (unrepresented) and had some concerns about the proposed investigation and treatment.  

She asked about the use of restraint (to prevent P from rubbing his eyes post-operatively and to prevent ‘self-injurious behaviour’, which meant head banging).  

She was worried about a proposal (which apparently is not in the draft order) for giving P a COVID vaccination (he’s unvaccinated) at the same time as the surgery (“If he has the injection at the same time as his eyes, and he has side effects and is not feeling well, he gets frustrated and starts hitting his head – I’m very concerned about that”).  

On behalf of P, Rhys Hadden of Serjeants’ Inn Chambers, (instructed by the Official Solicitor) said: 

In terms of COVID, it is somewhat unusual for the Official Solicitor to say, when asked about one aspect of health care, ‘what about this other aspect of health?’.  But the conditions of surgery are having to be laid out with respect to his non-vaccinated status.  And it is having an impact on his day-to-day living: there are some concerns about restrictions on access to the community.  The two things [COVID-vaccination and cataract surgery] may not happen together, but we invite the CCG to set out when they should happen.”

It was also clear that P’s mother wanted the court to know how frustrated she was by the delay in addressing her son’s deteriorating sight.  She said that it had first become apparent in November 2020 and that she’d expected something to be done after the best interests meeting in April 2021.  She ran through a chronology of repeated delays: 

Then he said he wouldn’t be doing the operation, so then we had to wait again, and I was ringing, constantly ringing, PALS, the eye clinic, the doctor’s secretary, the appointments people, everyone.  We’re coming up to two years down the line and it’s only just come to you. It’s caused me a lot of distress.  He doesn’t understand what’s happening to him. All the time we’ve spent to get P to where he is now has gone down the drain. Something could have been done a long time ago.  My son has got disabilities but that doesn’t mean he’s a nobody.”

She asked the judge to “shadow this case” until P had received treatment.

The judge reassured her that the court would keep oversight of the case, with a next hearing fixed for 17th June 2022 in the Royal Courts of Justice. The hearing will be open to the public. If anyone would like to observe (I think you’d need to go in person – it’s planned as an attended hearing) and blog for us about the hearing, please let us know. (We’re happy to provide support.)


I listened to P’s mother (and to the judge) talking about the delay in investigating and treating P’s sight loss in the context of what research shows about health care for people with learning disabilities.  

The Convention on the Rights of Persons with Disabilities says people with learning disabilities have the right to the “highest attainable standard of health”, but there is widespread evidence that they experience inequities in access to healthcare (and worse outcomes).

The Confidential Inquiry into premature deaths of people with learning disabilities shows the lack of reasonable adjustments provided to people with a learning disability (especially in accessing clinic appointments and investigations) as a contributory factor in a number of avoidable deaths. This can also, clearly, contributes to a deterioration in people’s quality of life.  

In particular, research has painted a troubling picture of the quality of healthcare people with a learning disability have received (or not received) over the course of the pandemic, exacerbating already high levels of health inequalities. (For a downloadable pdf from Mencap here)

I hope P is able to have the investigation he needs following the hearing on 17th June 2022.

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

[1] The judge was dealing with several other urgent hearings on the same day. As a result, the hearing started late: it was listed for 10.30am but didn’t begin until 12.46 (and we all waited online for the judge).  The judge then called a lunch break shortly after 1pm, telling us to return at 2pm.  When I logged in again at 2pm, I received the standard message telling me that the administrator was aware I was in the waiting room and would admit me when the meeting began. I’m not sure when ithe hearing actually did begin again because I was automatically removed from the waiting room at some point and didn’t notice this at the time  – I think, as a result,  I missed about 15 minutes of the hearing, and I think that means I missed most of the advocacy from Rhys Hadden (counsel for P).  (This is my own fault, not the court’s.  I should have been paying better attention to what was happening on my minimised MS Teams link while getting on with another job!).  Events around today’s hearing illustrate how busy the judges are and how stretched the court system is.

[2] The parties – the Hospital Trust, P, P’s Mother and the Clinical Commissioning Group – had not prepared Position Statements. They had a substantially agreed draft Order (which I have not seen) for the judge to approve, and had apparently expected a short case management hearing. Contrary to expectation, the hearing became protracted by the need to fit this hearing around the judge’s busy schedule.  Not having position statements means I was dependent on what was said in court for my understanding of the case – I don’t have anything in writing.  Note too that I did not receive a Transparency Order (although the need for one was mentioned in court).  Again, all evidence of a severely over-stretched system.

Photo by Matt Artz on Unsplash

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