Judge praised for protecting autonomy

Litigant who spoke for himself in the Court of Protection describes the experience

A few days before Christmas, the Surrey Heartlands Health and Care Partnership made an urgent application to the Court of Protection — the court that makes financial or welfare decisions for people when they lack the mental capacity to take these decisions themselves.

The case involved JH, a man in his early 40s who grew up in Reigate. As a teenager he was diagnosed with what is now referred to as autism spectrum disorder. He eats no solid food and survives on a high-energy nutritional drink. He has a phobia of hospitals and is visibly undernourished. Doctors were worried that if he was exposed to infection he would not have the physical strength to resist it.

Court of Protection, London

But this was not an application to bring JH into a clinical setting where his health could be monitored. On the contrary, the Surrey Heartlands integrated care board asked the court to declare that an advance decision made by JH in 2017 was valid. In the written document, JH had said he did not want to attend any hospital or medical setting if his health deteriorated. Nor did he want to receive intrusive treatment. The care board asked the court to confirm that its staff would not incur any liability for respecting JH’s decision and withholding the treatment that he had refused.

JH attended the hearing by telephone. A doctor gave evidence that JH retained the capacity to act as a litigant-in-person.

Mr Justice Hayden agreed with that assessment and granted the declaration requested by the care board. Explaining his decision, the senior judge said that JH

makes the most out of his circumstances. He gets great pleasure from life. Ultimately, he simply cannot accept the type of intrusive investigations contemplated here, even if such investigations ultimately improved the quality of his life and extend its duration. Refusing these procedures may not be a decision that many of us would consider to be right but, as I have said, that is not what falls into question here.

The court is required to protect JH’s capacity to take decisions for himself — both those that may be, objectively, ill-advised as well as those that might, more generally, be regarded as wise. I do not say necessarily that in his circumstances this is an unwise decision for JH. It may be that the admission for investigation might be so re-traumatising for him that its impact would be profound in an entirely different, but negative, way.

Thus far, there is nothing particularly unusual about the case. Hayden’s decision is entirely consistent with the law. But what makes this case unique is that we now have JH’s own view. It’s thought to be the first time that “P” — the patient or protected person in a case such as this — has given an interview about the experience of appearing as a party in the Court of Protection.

JH speaks

JH’s account was obtained by Celia Kitzinger, founding co-director of the Open Justice Court of Protection Project. In her introduction to JH’s comments, she says:

For JH, the process of telling his story for this blog post has been, he says, “empowering”. He is rightly proud of his role in the Court of Protection proceedings and feels that the outcome of the case has enabled him to be “a free man. Vindicated!”.

It’s a story he wants to tell so that other people who get caught up in disputes with health or social care teams can learn a bit more about how those disputes can be resolved in the Court of Protection — and perhaps they will be a bit less stressed and anxious by the idea of going to court when they realise from this blog post how “friendly” the judges can be.

He also wants to encourage other people to make advance decisions: “If you don’t have one of them, you have no chance! If you do, you have some protection for yourself.”

JH was interviewed by his cousin, referred to as NB. You can read the interview on the open justice website. It’s a revealing account of the challenges JH faced. This is how he summed up his experience:

I am happy with the judge’s decision and his attitude towards me as he was really nice to me. He came across as a friend — not at all like a judge, all stiff-collared!

I was pleased I represented myself as I know myself better than anyone else. I feel elated now that I never have to worry about being made to have investigations and treatments again. I hope that no one else has to go through the same harassment that I got from them and their controlling and paternalistic attitude. 

I really hope this helps other people to stick up for themselves.