Application by the NHS Trust that an autistic man with a phobia of hospitals should not undergo haemodialysis, which would have to be done under heavy sedation. The application was refused.
This application concerns a 29-year-old young man, Jordan Tooke. He has a diagnosis of autism, severe learning disabilities, and William’s syndrome, which is characterised by developmental delay and other variable features. He is unable to communicate verbally but is effective, indeed dextrous, in non-verbal communication. He has, during the course of the last twelve months, been diagnosed as suffering from chronic kidney disease and has now entered end-stage renal failure. Jordan, in consequence of the challenges identified, developed a long-standing phobia of hospitals in general and needles in particular. When this case last came before the court, substantively, on 21st April 2023, it was thought by all concerned, not least Jordan’s parents, that he would not be able to tolerate the considerable restrictions and privations involved in haemodialysis treatment which was necessary to keep him alive while he waited for a kidney transplant. The NHS Trust argued that haemodialysis, with sedation, is not in Jordan’s best interests and favoured palliative care which even though it would involve certain death, it would be predictable and controlled and would not subject Jordan to risky and potentially distressing treatment over an unspecified length of time nor deprive Jordan of the liberties and aspects of his life that he currently enjoys. The parents were in favour of haemodialysis, with sedation.
The court agreed with the parents. Having regard to a consultant anaesthetist’s clear view that Jordan’s sedation can be managed, the judge came to the view that the opportunity of dialysis ought to be afforded to Jordan and that such opportunity can properly be said to be in his best interests. At the request of the parents. reporting restrictions were removed so that their son could be named. The parents are intensely committed to promoting the rights of people with disabilities and keen to take the opportunity to signal to the wider public the importance of those rights, as well as hoping that publicity may be effective in achieving for Jordan what is known as an ‘altruistic donor’ (receipt of a ‘live’ kidney).
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