The patient’s viewpoint

By Fiona Loud, Kidney Care UK

   

Kidney Care UK is carrying out a number of initiatives to provide total support to kidney patients and their families, one of them being to raise awareness on kidney disease and transplantation amongst patients, the public and healthcare professionals.

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.

Patient groups agree that there is a need to improve the way kidney disease is handled in the UK:

  • Moderate to severe kidney disease affects about 6% of the UK population, all stages affects 10% percent of the population
  • Recent CKD audit in England & Wales of 1,000 practices shows routine checks not done well enough on people at risk
  • Early detection, prevention of progression and personalized support programme is essential for a good outcome
  • It is estimated that treatment of kidney failure amount to £1.5bn annually
  • Of 60,000 kidney patients in the UK, just under half of them are on dialysis, with session at least 3 times a week, lasting 4 hours a time, but resulting in only 10% normal kidney function

Referring to her own experience Fiona Loud argued in favour of increasing access to kidney transplant because it is “the gold standard treatment”. In her case, after 5 years on dialysis, she was lucky enough to benefit from a living kidney donation from her husband.

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 (more). However, in such opt-out systems, the family retains the right to over-ride that presumed decision of consent if desired.

National conversation is 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 presentation slides here.