Behind the headlines: upholding the value of a disabled life

 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.

Jordan would be put on the waiting list for a kidney from a deceased patient and then suspended from the list. The average waiting time is around 18 months and by putting him on the list and suspending him, Jordan would be able to build up “credit” whilst desensitisation work was done to put him in the best position to overcome needle phobia and be able to dialyse. Once established on dialysis, he would be able to be activated on the transplant list with the benefit of his credit time accrued.

Under this plan, specialist nurses would work with Jordan to replicate the circumstances of haemodialysis to see if he was able to adjust and prepare for it. There would be gradual familiarisation with the hospital kidney centre therapy room, led initially by staff whom Jordan knew, and gradually introducing others. The plan involved simulating a line, preparing him for the sounds that the dialysis machine makes, and constructing incentives and positive reinforcement when he tolerated this.  Despite the considerable burden that implementing this exceptional plan placed on the dialysis unit staff, the NHS Trust offered this for Jordan.  No battle there at all.

There was no doubt that this desensitisation process was going to be a challenge, requiring the work and commitment of a number of people alongside Jordan. Supporting him were his indomitable parents, his carers, and an extremely dedicated team of nurses and doctors who put the desensitisation programme into place and delivered it over the next months.

What the newspapers have not thought important enough to report is that, against the odds, Jordan exceeded everybody’s expectations.

His anxiety diminished; his behaviour in hospital improved; it transpired that he could indeed learn to tolerate procedures when they were carried out in a Jordan-centred way.  His achievements were described by Mr Justice Hayden as being “both remarkable and transformative”.

Despite the very significant achievements that Jordan made in the desensitisation training, however, his ability to comply with the rigours of thrice weekly dialysis remained rather impaired.  There remained a real risk that Jordan would forcibly pull out the central venous catheter line required to receive dialysis, and so the clinical team, supported by the independent experts, concluded that haemodialysis could only be safely and effectively provided with the aid of chemical sedation.

To that end the anaesthetic team produced a second, very careful and well thought through “Jordan focused” care plan designed to facilitate that sedation.  What it proposed went beyond anything that has previously been undertaken with any other patient.  The plan was not without risk; indeed, as the judge stated “there can be no doubt that the sedation plan carries significant and troubling risks. Some of those risks involve potentially very serious consequences.”  But Jordan’s kidneys were failing; the alternative was certain death: the question, then, was whether haemodialysis under sedation, with all its attendant risks, was so contrary to Jordan’s best interests that it should not be pursued.

There was no battle. The healthcare professionals, knowing the heavy demands that dialysis makes of patients who can make their own decisions and don’t have a needle phobia, felt, on balance and with great regret, that it wouldn’t be in his interests to put Jordan through this. But all of them were willing to give him the best dialysis experience they possibly could if the Judge said that dialysis was in his best interests.  His parents understandably wanted Jordan to be given every chance of life.

In the final analysis the judge agreed with them that dialysis should be tried.

It is a disservice to the efforts put in by all – family, clinical staff, lawyers – to help Jordan, as seen in the reasoned judgment of Hayden J, weighing up every point for and against the proposed treatment,  to characterise these proceedings as a fight and a battle.   Rather there was an extremely difficult decision to be made, which rightly required the oversight of a High Court judge.  Jordan’s zest for life and his presumed wish to live was at the heart of that difficult decision making process.

No new law here – it was a straightforward application of s.4 Mental Capacity Act 2005 to ascertain Jordan’s best interests.  But importantly, as Hayden J observed, in many cases where the Courts are asked to consider issues of this magnitude, the contemplated treatment is often burdensome and ultimately futile. Here, although dialysis was undoubtedly burdensome and risky, it was not futile. All had agreed that dialysis had been out of the question in April, but that, as a result of the desensitisation work, was now possible under sedation; all agreed that this held out the only possibility of preserving Jordan’s life long enough for a transplant to restore his health.

In the not-so-distant past, before society began to develop a more enlightened understanding of the needs of people with disabilities, a patient like Jordan would almost certainly not have even been considered suitable by anyone for haemodialysis or a kidney transplant. Today, a prolonged life is a realistic possibility for him because of how Jordan, his parents, his carers and all the nurses and doctors worked together.

Pioneering teamwork valuing disabled lives, not confrontation,  should have been the headline.  In bleak times for our health service, that really is news.

Katie Gollop KC acted for the NHS Trusts and Bridget Dolan KC acted for the ICB in this case.

Read the press coverage of the case here:


Eastern Daily Press