By Celia Kitzinger, 3rd March 2021
There was a positive outcome to the hearing before Mrs Justice Lieven on Wednesday 27th January 2021.
After listening to evidence from the treating clinicians and an independent expert consultant in oncology, the Trust and the mother of “RB” (as he is called in the court documents) came to an agreement about the course of treatment he should have for his testicular cancer.
There’s a published judgment about this case, which tells the story from the perspective of the judge (The Newcastle Upon Tyne Hospitals NHS Foundation Trust v RB  EWCOP 11 (27 January 2021)).
There’s a Tweet Thread about the hearing which describes how the story unfolded in court from the perspective of a public observer (Tweet Thread no. 3 here).
This blog post foregrounds the story from the perspective of RB’s mother.
She can’t tell this story under her own name because the transparency order protects her son’s identity and that of his family members. She asked me to refer to her as “Joan” and to her son as “Simon”. I spoke with her for about an hour and a half via a video-platform a couple of weeks after the hearing and she read through an earlier draft of this post and made changes to ensure it reflected her views and experience. I am hugely grateful to Joan for sharing her experience here.
Simon is 30. He has a diagnosis of Fragile X Syndrome, a genetic condition causing learning disabilities (and his younger brother has the same condition). He also has atypical severe autism, dysphagia, and limited verbal communication. He lives at home with his parents and brother and has a package of care, including attendance at a day care centre.
Joan describes him as “cheeky” and “full of life”: “he has a beautiful smile and gorgeous long eyelashes- a lot of my women friends have said, ‘I would die for his eyelashes!’” He loves motorbikes: he sits on his dad’s bike, and “when he’s out and a motorbike goes by, his head will fly around to see where it is and he whacks his dad on the arm as if to say ‘look! There’s a motorbike!’”.
In late September 2020, Simon was diagnosed with testicular cancer. Joan told me what happened.
“His dad was changing his pad while I was in the kitchen doing dinner and he shouted through to me and I said, ‘hang on a sec, I’m in the oven swapping stuff around’. And then I went through and he said, ‘come and look at his scrotum’. So I put a glove on and examined it, and it felt like it was big, with a lot of fluid, extremely hard and heavy. It felt really different from the right one which felt normal and squishy and moving about.”
Things moved quickly after Joan phoned 111 and was advised to take him into hospital immediately.
“I took him in and he saw a urologist and he wouldn’t get on the bed so they put the mattress on the floor and examined him, and the urologist went ‘hm!’ – and I’m starting to get a bit worried by this time. He said, ‘It’s one of three things. It’s either a hernia, or a twisted testicle or a tumour. He’s not screaming in pain, and he doesn’t have a temperature, so I think it’s a tumour, but I can’t say 100% until he’s had a scan.’ When I heard ‘tumour’ I went, ‘is it benign?’. He said, ‘prepare yourself for the worst.’”
“No treatment options”
The scan did show cancer and an operation was scheduled for two weeks later, and Simon’s left testicle was removed. A couple of days later though, a CT scan showed that the cancer had spread into Simon’s lymph nodes. On 11th December 2020, Simon’s parents were advised that there were “no treatment options” and that “comfort measures would be most appropriate, as going ahead with treatment would limit Simon’s quality of life”. A palliative care referral was made.
Joan describes her experience of this interaction:
“I asked the doctor, ‘So what’s next?’. The doctor dropped his head and looked at the floor and said, ‘There’s nothing we can do’. I said, ‘Pardon?’ – not as in I haven’t heard you, but please bloody explain yourself. He kept looking at the floor and saying, ‘there’s nothing we can do’. So, I said again, ‘What’s next?’ – meaning, what kind of treatment? He said, ‘He’s got twelve months’. To say I lost it is an understatement. I was screaming, crying, punching the walls with my fists. The learning disability nurse sat there like a rabbit in the headlights saying, ‘I’m so sorry’. Well, ‘Sorry isn’t what I want!’ I begged him, I put my hands before my face in the prayer position and I begged him to help my son and he kept saying ‘There’s nothing we can do’. The day the doctor said he couldn’t do anything and my son had 12 months left to live, it was a case of we either accept it, or we do something about it. I’m not really one for saying, ‘Oh, okay we’ll do what you say’. The Mamma Bear instinct kicks in. I wanted to see what else could be done.”
Joan describes her own feelings during this period.
I was having nightmares when I was sleeping, and I wasn’t sleeping much. I was lying awake with all these thoughts going through my head at two o’clock in the morning about what it would be like for him, dying with testicular cancer, and is he going to be in pain and should I raise money to take him to Switzerland, you know, Dignitas, instead? Looking at Simon and imagining him not being here and what it would be like to watch the cancer spread. I lost my older brother to leukaemia, and my husband’s dad had cancer – and the thought of Simon going through that, the cancer being allowed to progress inside his body, I just couldn’t bear to see that. And it was robbing him of his life. You either stay at the bottom of the well, or you climb back out, and I needed to climb back out for his sake.
“The power of Facebook and Twitter!”
Social media provided a life-line for Joan. She was in touch with a range of organisations, including Macmillan Cancer Support, Cancer Research UK and their Facebook Group for men with testicular cancer (and their family and friends), “Checkemlads Testicular Cancer UK”. Her Facebook friends included lots of people with learning disabled children, and she was getting lots of messages and offers of help. She set up a (private) Facebook Group which attracted more than two hundred members. She posted about what was happening and asked for help – and it was this that led her to Kirsty Stuart of Irwin Mitchell, the solicitor she instructed in this case.
Both Joan and Kirsty also used social media to find an expert second opinion about what kind of treatment might work best for Simon. It began when someone posted the story about Ian Shaw on Joan’s Facebook page. Ian is a learning-disabled man who had testicular cancer. As with Joan’s son, his doctors had said that nothing more could be done for him. After his story appeared on the BBC, Ian was offered treatment at the Royal Marsden (the story is here). Joan remembers feeling “shocked” when she read the story: it was so similar to what was now happening to her own son. She thought the doctor who’d treated Ian Shaw would be a good person to have a second opinion from, so Kirsty Stuart tweeted the journalist who wrote the story about Ian, and the journalist responded and put Joan in touch with Ian’s mum. Having talked to Jan Shaw at the end of December, Joan decided that he would be the right doctor to consult, and Kirsty then contacted him for a second opinion (paid for by the Trust). Joan posted exultantly on her Facebook page about “the power of Facebook and Twitter!”.
The legal case
When solicitor Kirsty Stuart (and trainee solicitor Katie Wilkins) got involved, it was “the light at the end of the tunnel”.
Kirsty wrote to the Trust asking them to provide an assessment that Simon lacked capacity to consent to oncology treatment. She also asked them to convene a best interests meeting at which appropriate treatment options could be explored. Joan describes the meeting.
“It was an in-person meeting, on 7th January 2021. They said they wouldn’t be able to offer BEP chemotherapy because he’d need to be sedated to be given it and that just wasn’t feasible for more than 70 hours of treatment. There was a modified treatment plan they were willing to give now though. I said I wanted a second opinion because my trust in that doctor had just completely gone down the drain. I simply didn’t trust them.“
A weeks after this meeting, the Trust issued legal proceedings. They put forward their treatment plan (as outlined in the judgment), and also submitted a second opinion from the professor of urological cancer who had treated Ian Shaw. – an opinion which raised alternative treatment possibilities.
In court, Joan was acting as litigation friend for her son, with legal aid funding. Her solicitor was Kirsty Stuart of Irwin Mitchell, who instructed barrister Parishil Patel QC of 39 Essex Chambers – and it was he who spoke on behalf of Simon in court. Emma Sutton of Serjeants’ Inn acted for the Trust.
Although she was present in court throughout the hearing, Joan chose to keep her mike and camera off.
“I got a lot of support from Kirsty explaining things and during the hearing we were using WhatsApp, so I could communicate with Kirsty, and with Katie the trainee solicitor, and the barrister. I could just send questions.”
Joan was initially quite alarmed when told there would potentially be members of the public and journalists at the hearing – but in the event, this was not a problem.
“Kirsty said there might be journalists and observers and I was quite shocked at first. I asked ‘Will people really find it interesting?’ And she said ‘Oh yes, because medical treatment for people with learning disabilities is an important public issue’. It took me a couple of hours to get my head around it, but I realised I could just pretend you weren’t there.”
She was impressed with the way the court handled the case.
“In court there were a lot of technical terms used, and I liked it that the judge kept stopping the doctors and asking them to explain. For me it was re-hearing explanations – it was a refresher course for me, re-clarifying stuff I already knew. But I’d only had [the second opinion expert] report for a day or two and I was still trying to figure out parts of that. I liked the judge saying, ‘I’m not a doctor – please explain’ because I was doing that all the time in meetings, putting my hand up and saying, “hello! I’m not a doctor. Please explain what you are talking about”. The judge didn’t take any nonsense off the doctors – or off the solicitors. She was very firm with them.”
“The Court was really focussed on getting Simon some help. Come dinner time, even though my energy levels were just sapped, I had more of a clear picture in my head about what I wanted to do. I could see it wasn’t going to work to get him down to Barts in London. Not with Covid as well. I’d have had to have the day centre staff down with him, and I came to the conclusion, even though I’m upset with Newcastle, that it is safer in terms of Covid, and safer for the treatment as well.”
When the hearing finished, Simon went into hospital that afternoon, and got settled on the ward. The next day he had the first treatment and was pretty tired the whole of the next week, but the initial test results are encouraging and show that the treatment is working.
There’s only been one hitch – with administration of one of the medications.
After hearing evidence from three medical experts, the Court authorised use of oral (rather than IV) Etoposide (see paras. 15 and 16 of the judgment) – based in part on counsel reporting back to the court after lunch that Joan was of the view that oral administration could be managed with “relative ease”. Joan tells me now, though:
“it must be the worst tasting medicine God has ever invented. By the second dose he was whacking my hands as if to say ‘mam, I don’t want this’. I had to fight with him again to get the third dose down, and the fourth one the poor little soul spewed it up. So, this month he’s getting the capsules”.
Sometimes, says Joan, it’s necessary to involve solicitors and invoke the law in order to get the right treatment for disabled people.
“I still believe now if we hadn’t asked for his medical notes and enlisted the help of the Irwin Mitchell solicitors, they would not be treating Simon now. I still feel like shaming them was the only way to make them listen and I find that really sad that had to happen.”
Joan would like her positive experience of the Court of Protection to inspire other families to stand up for the rights of their disabled relatives.
“I was just glad I was able to get the Court to look at it. I hope I’ve helped other people to see they can stand up for their disabled relatives if they have something wrong and possibly life-threatening. A lot of parents out there feel you can’t challenge a doctor, because they are the experts. I just thought, “Little man, who are you to make that decision about my son’s life?’; It’s not acceptable to let someone die just because they’ve got a learning disability. You’ve got to be that person’s voice. You have to stand up for them. Also, I hope it’s made the Trust more aware that you don’t just give up on disabled people. You look at other possible treatments. I hope it means that another family won’t be put through this pain and torment.”
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia
 Kirsty Stuart points out, “even if we were all in agreement treatment would still have needed to be authorised by the court due to the level of sedation and ‘restraint’ therefore being used”.