“ I want to go home” – catching up with GNK 13 months later for the final hearing

By Celia Kitzinger, 27th March 2024

More than a year ago, back in November 2022, assistant psychologist Catalia Griffiths watched and then blogged about a (remote) hearing before Deputy District Judge Reeder concerning a woman in her 50s who was in hospital with Huntington’s disease.  

The title of the blog post she wrote, reflects what the woman (GNK) told the court: ““I don’t want to be here… I want to go home”.

Many of the cases we blog about are just a ‘snapshot’ of a hearing at a particular moment in time. It’s hard to track cases through the courts. There’s no way of setting an “alert” to tell us when a case is coming back – and even though arrangements are sometimes made at the end of one hearing as to when the next one will be, these are often vacated or rearranged.  

So when we happened to spot this case back in court again, we really wanted to know how GNK was doing and what had happened.

Thirteen months later, I watched the final hearing in this case (COP 1399280T) – which, as before, was heard by DDJ Reeder, sitting remotely at First Avenue House (listed as below) 

The outcome, as the judge acknowledged, is not what GNK had said she wanted. 

Background (from 2022)

Thirteen months ago, there had seemed a (remote) possibility that GNK might be able to return home. Although the judge was concerned that there was “a refusal by GNK to acknowledge her Huntington’s disease and a refusal to acknowledge the need for care”, he wanted the possibility of GNK  moving back home to be properly explored.  There were problems. Her home was apparently “significantly hoarded” and “not safe to get into”, and nobody appeared to know the financial arrangements for the tenancy.  

Meanwhile the hospital trust wanted to discharge her to an interim placement, while the move home was investigated. The draft order asked for authorisation for physical and chemical restraint if required to make that possible, but without sufficient detail on what would trigger the use of restraint, or lead to escalation in restraint. This was something that concerned the judge greatly. It also troubled the observer/blogger, who had used restraint in her previous role as a support worker. The judge asked for the order to be amended.  

That was pretty much all we knew.

The hearing on 29^th February 2024

It was a short hearing because the parties had already reached agreement on a draft order but at an earlier hearing the judge had directed them to go away and just check that some additions to the standard authorisation would work on the ground, in practical terms (e.g. that there would be funding).  This hearing was really only to approve that agreed order, with those additions now confirmed. As the judge put it, it was about “making sure the ‘t’s were crossed and the ‘i’s dotted”.

I learnt that about a week after the hearing Catalia Griffiths observed back in 2022, GNK moved to a care home (I don’t know whether restraint was needed to accomplish this) and she’s been there ever since.  It provides 24-hour nursing case. 

This hearing was to make final declarations: 

1. that GNK lacks capacity to litigate, to make decisions in respect of her care and residence, to manage her finances, property and affairs and to terminate a tenancy and sign a tenancy agreement.

2. that it’s in GNK’s best interests to stay in her current care home, and to receive care and treatment there.

However, the Deprivation of Liberty Order is subject to a variation of the standard authorisation conditions, and those are what the judge wanted to go through.

One condition was that arrangements should be made for GNK to attend the church of her choice.  This is a Revivalist church which is said to “place their members in a trance” and I understand that  staff did not want to attend with her, so arrangements were to be put in place using agency staff if needed.

There were to be offers to go out into the community (e.g. to shops) without making this contingent on GNK having had a shower that morning (something she’s been refusing lately) as long as she is not malodorous and unkempt, and care home staff are to keep detailed and accurate records of all the times a trip in the community is offered and clearly record the reasons that this does not take place. 

Arrangements are to made for care home staff to work closely with the expert clinicians from [Hospital] in order better to understand the care needs of a person with Huntington’s – and I think it had been agreed that the local authority would fund specialist training from the Huntington’s Disease Association.

The standard authorisation expires on 17 January 2025 and the applicant will be asked to undertake a new assessment prior to its expiry.

Reflections

Given the extent of the nursing care that GNK is said to need, it’s hard to see what else could have been done under the circumstances.  The ‘additional conditions’ to the standard authorisation go some way towards creating positive benefits for GNK, given that she’s going to be living somewhere she said originally she didn’t want to be.

Finally, in terms of transparency, the judge was extremely helpful – ensuring that a summary was provided at the beginning of the hearing, and pointing out, when he asked counsel to go through the order, that they should do so “bearing in mind the observers haven’t seen it”.  I’m grateful to Monika Kreel of TV Edwards Solicitors (GNK’s solicitor) and Sophie Caseley of Garden Court Chambers (GNK’s counsel) – both via the Official Solicitor – for the anonymised version of their position statement, which assisted my understanding.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia. She can be contacted via openjustice@yahoo.com