Norfolk & Norwich Univ. Hospital NHSF Trust and others v Tooke and others [2023] EWCOP 45
‘Mum wins court fight to save son’ – ‘Norwich mum wins dialysis battle’ – ‘Family joy as Jordan wins ‘life or death’ battle’ – ‘Trust in legal battle over care can be named’
Sub-editors’ headlines are what sells newspapers, but it is such a shame that in the race to grab the reader’s attention with warlike language about fights and battles, the really important point in this case has been totally lost.
Jordan Tooke is 29 and has a diagnosis of autism, severe learning disabilities, and William’s syndrome. Related to his disabilities he has developed a long-standing phobia of hospitals in general and needles in particular – which is obviously problematic given he also has chronic kidney disease and recently entered end-stage renal failure.
What the headlines have overlooked is that nobody, not even his parents, thought that Jordan would be able to tolerate the considerable restrictions involved in receiving the life-preserving haemodialysis treatment he would need – for three to four hours, three times a week – when his kidneys failed. So when his mother started court proceedings, it was on the express basis that he was not a candidate for dialysis. A kidney transplant was thought to be his only hope of life: that was what the proceedings were all about.
However, doctors at the separate hospital where any transplant operation would be provided were clear that being able to undergo haemodialysis was a pre-condition for any patient having a kidney transplant. An independent expert instructed by Jordan’s parents agreed that haemodialysis was not an option.
That might well have been the end of it. However, at a hearing in April, the dialysis team, the transplant team, the Learning Disability team, Jordan’s parents and the legal teams worked together to craft a way forward.