Manchester University NHS Foundation Trust v William Verden (by His Litigation Friend, The Official Solicitor)
| Jurisdiction | England & Wales |
| Judge | Mrs Justice Arbuthnot |
| Judgment Date | 08 March 2022 |
| Neutral Citation | [2022] EWCOP 9 |
| Docket Number | Case No: COP 13866627 |
| Court | Court of Protection |
[2022] EWCOP 9
IN THE COURT OF PROTECTION
SITTING AT THE LIVERPOOL CIVIL
AND FAMILY COURT
Royal Courts of Justice
Strand, London, WC2A 2LL
Mrs Justice Arbuthnot
Case No: COP 13866627
and
Helen Mulholland (instructed by Hill Dickinson) for Manchester University NHS Foundation Trust
Emma Sutton (instructed by the Official Solicitor) for the 1 st Respondent
Victoria Butler-Cole QC (instructed by Irwin Mitchell) for the 2 nd Respondent
Hearing dates: 28 th February – 3 rd March 2022
Approved Judgment
I direct that pursuant to CPR PD 39A para 6.1 no official shorthand note shall be taken of this Judgment and that copies of this version as handed down may be treated as authentic.
THE HONOURABLE Mrs Justice Arbuthnot
Introduction
These proceedings in the Court of Protection concern William Verden who was born on 25 January 2005 and is now aged 17 years old. He lacks capacity to conduct these proceedings and make decisions regarding his medical treatment due to his learning disability, autism and ADHD.
The application before this court is made by Manchester University NHS Foundation Trust (“the Trust”) which is responsible for Royal Manchester Children's Hospital. The Trust's clinicians and the independent witnesses have set before the court the risks and benefits to William of having a kidney transplant with post operative sedation and ventilation for his end stage renal failure.
The Trust applies for a declaration in relation to William's capacity and for the court to consider whether an order should be made that it is in William's best interests that he should have a kidney transplant with sedation and ventilation post-operatively in light of the risks to William of the treatment.
The respondents are William represented by the Official Solicitor and his mother Amy McLennan. They have weighed up carefully the risks and benefits to William of a transplant and of the post operative care and their position is that it is in his best interests for him to have the transplant.
I would like to acknowledge the considerable help I have received in this case from extremely able and experienced counsel, all three have been alive to the difficulties in the decisions to be taken and have done all they can to assist this court in its decision-making.
Background
William was born on 25th January 2005. In 2012, he was diagnosed with a complex learning disability. William went to specialist schools, and I have a report from one of them in the bundle of evidence.
William has diagnoses of moderate to severe learning disabilities with autistic spectrum condition and ADHD, with accompanying behavioural disturbances. He has hypersensitivity to anything on his skin and it is not unusual for him to pick at dressings protecting lines or tubes going into his body.
William lives at home with his mother, his father, Will and his sister, Ruby. He also has an older brother Levi. There is an extended family including grandparents, and an aunt. William is described by his mother as being at the “heart” of the family. William uses respite care for one to two nights per week and there are overnight carers to support William and his family at home four nights per week as William suffers from disturbed nights and poor sleep.
William and his family
William is at the centre of the decisions I have to take. I had the pleasure of meeting him remotely on Monday evening when he was with the Miss Sutton, her instructing solicitor Mr Edwards and Miss Varley who was instructed by the Official Solicitor to support William during the meeting.
His first question to me was to ask when it was that he was going to have the operation. I said I was unable to answer that. He told me he was worried about people seeing the tubes he might have in his leg, feet and arms. He said he was scared about the operation and worried about the tubes getting knocked by children.
William mentioned security on the ward and from what I gathered he was concerned that he may want to go for a walk after the transplant and that security may prevent him from doing so. He said if he stayed in hospital for a bit, he would like to go out for a walk to get some fresh air, he would want to be able to exercise and as he put it “get my energy back”.
William told me he liked to play golf even though his arms hurt afterwards, football and kerby. I had never played kerby so he explained that it was played with others and involved kicking a football against the kerb. I noted William's excitement when describing the game which he clearly enjoyed.
William told me about the jobs he likes doing. He was at the respite centre when we spoke and he said he liked to make tea, do jobs like mopping, putting pictures up, getting wood from the shops and making picture frames. Another job he enjoyed is laminating documents. We agreed this is a very useful thing to be able to do. It is very clear he enjoys the life he leads, playing games, doing odd jobs, going to school and the respite centre and being with his family.
I saw how close he is to his family. Ruby, his 15-year-old sister, was in court the first day, Levi his adult brother was there the second. Levi had been in the hospital at William's side for three days, 24 hours a day, to keep his brother company when an infection brought him into the hospital unexpectedly on 27 th December 2021.
The first respondent attended each day, I was struck by her dignity, I noted the way that she had advocated for her son in every way she could from the moment it was clear he had learning disabilities.
The mother is a ‘doer’ who fights for her child. An example of this was that Ms McLennan recognised that what William really needed was a kidney from a live donor, so she launched a public appeal to find an altruistic donor to ensure her son had the best chance of living. William is very lucky to have the family he has, and they feel lucky to have him.
William's health
In November 2019, William presented with signs of kidney failure. After various tests, on 9 th December 2019 he was placed on steroids, but they did not reduce his symptoms. Quite the reverse, the second line medications appeared to accelerate his kidney function decline. He was therefore diagnosed with a disease called Steroid Resistant Nephrotic Syndrome (“SRNS”) on 30 th December 2019.
In April 2020, peritoneal dialysis commenced. Unfortunately, this form of dialysis was ultimately unsuccessful and from 21 st September 2021, when the peritoneal dialysis catheter was removed and a right-sided central venous haemodialysis catheter was inserted, William's treatment plan became haemodialysis (“HD”) via a line or catheter for four hours a day, three days a week (Monday, Wednesday and Friday) and for two hours once a week on a Thursday.
HD is dependent on venous access. The amount of access reduces if the HD line comes out or is dislodged in some way and has to be replaced. A number of disturbances to the HD line have taken place, two in September 2021, four in October 2021, two in November 2021 and two in December 2021. These disturbances were caused by William's pulling off the dressings covering the central line or touching the site of the line. On occasions the site had to be cleaned and re-dressed and on others the line had to be reinserted by surgery. The last occasion that a new line had to be inserted was on 10 th December 2021.
There have been occasions recorded by the hospital leading up to early January 2022 when William had been aggressive or violent, this was aimed usually at his parents although on a few occasions staff have been hit.
The witnesses were agreed that incidents involving the central line dressing had reduced in the recent weeks as William had become more accustomed to the HD routine at the hospital. There had been fewer outbursts recently too.
Prognosis
The HD treatment requires venous access which reduces as the veins become compromised until there are no veins left to use. The clinicians treating William say that having used new venous access to insert the dislodged lines, he has just two access points left when the present venous access point fails. They consider that venous access will be possible only for up to around 12 months.
The only alternative to HD is a kidney transplant which will, if it is successful, give William a future of about 15 to 20 years before another transplant is required. If SRNS recurs the 15 to 20 years is halved to 7.5 to 10 years.
The difficulties in William having a transplant are two-fold, first, from his diagnosis that the SRNS is not due to an underlying genetic abnormality means the chance of a successful transplant without disease (SRNS) recurrence is at best 47% and at worse around 80% or above. If SRNS recurred, William would need Plasma Exchange (“PE”) for a number of sessions over an unspecified period when he would have a number of lines going into his body.
The second difficulty is significant, William is hypersensitive to anything on his skin and has a habit of scratching at dressings which means there is a real risk that, as has happened in the past, lifesaving lines or tubes could be dislodged or moved. It is the potential for compromising the numerous lines which will be required post-operatively which are of particular concern to the clinicians and the question for them is how this can be managed.
A further issue is that William is unpredictable and is sometimes aggressive towards others due to his autism, ADHD and learning disabilities and he has poor impulse control. William does not cope with change and would have...
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The complexities of best interests decisions and the role of parents in clinical ethics committees process
...Royal Children's Hospital for sharing their experience and expertise to provide an Australian perspective for this article. Footnotes 1 [2022] EWCOP 9. 2 The Court also highlighted William's rights were protected by the European Convention on Human Rights, including the right to life (Artic......