CKD and transplantation in the UK : a patient’s viewpoint

For Kidney Care UK representative Fiona Loud – transplantation is “the gold standard treatment” – as she put it at the European Kidney Forum 2018 in Brussels. Affected by a rare disease causing pre-eclampsia and having to face two episodes of kidney cancer, Fiona Loud said she was fortunate enough to benefit from a transplant after 5 years on dialysis thanks to her husband.

In the UK, in 2017/2018, there were 1,575 deceased donors – a record, but 4,700 have died waiting for a transplant in the last 5 years – that is 3 per day! Likewise, in the UK, 250,000 people a year die, but only 5,000-7,000 will become donors: 4 in 10 families who could approve a donation when their loved one had passed away, say no; this can be as high as 7 in 10 from a black or Asian background.

Establishing an “opt-out” system based on presumed consent is being considered in England based on the promising results of Wales where an opt-out system was introduced in 2015. Results are promising, with higher consent at 24.3 donors pmp However, in such opt-out systems, the family retains the right to over-ride that presumed decision of consent if desired.

National conversations are slowly increasing donation numbers BUT for success to increase, there needs to be more education for the public and in schools, adequate resources such as hospital transplant facilities and surgeons, and donors and their families need to be better supported.

Download Fiona Loud’s presentation slides here.