Jakes cycling for us and Sepsis..

Here is Jake's story...

My name is Jake Johns and I was diagnosed with Primary Hyperoxaluria at birth. This causes me to have chronic kidney disease from the formation of chronic kidney stones and has led to me having approximately 57 operations Not that I'm counting OR anything...

I have also suffered from having Sepsis on two occasions and it isn’t nice at all so this is why I am raising money this year.

I would really appreciate any donations for the UK Sepsis Trust as I cycle 16 miles to recognise their support for people who have lived and suffered from Sepsis it is a killer and we all need to raise awareness for it.

16mile cycle ride from exmouth to dawlish. Raising money for THE UK SEPSIS TRUST.

Sposor him here!

See some of the people below who make the EDKPA what it is today...


So what do we do?


  • We pay for Information and Advice Service with Exeter CAB - this cost approx. £6,000 per year. We do this as we have no social worker and patients can now get the best advice on benefits etc. Jill Baines (transplant patient) helps out in making the appointments and will accompany patients when they go to CAB (she is unpaid)
  • Ria Taylor's (CKD Clinical Nurse Specialist and Renal Young Adult/Transition Nurse) we pay part of her salary - approx. £8000 per year.
  • Recently and for a 12-month period we are paying and supplying snacks for patients on Sid ward to have with their morning cuppa - approx. £50 per week.
  • We provide and replace televisions/remotes on the units - there are approx. 36 (Sid ward-Heavitree-Honiton-Barnstaple-Torbay).Remotes alone cost approx £1000 per year, including a rolling schedule of replacements (the NHS do not pay for televisions).
  • The newsletter and website.  The newsletter is our main means of communicating with our members.  Whilst we have cut costs as far as possible by sending this out by email some members still prefer hard copies with the additional costs that involves.
  • Social, fundraising and raising awareness events: For example, the summer party, organ awareness week and numerous other events.
  • One-off purchases and grants e.g. the purchase of dialysis machine and other essential hospital equipment.
  • EDKPA  Secretary.  An invaluable service to our members both in organisational terms and often being the first point of contact for anyone wanting to be in touch.
  • Subsidised trips- e.g. weekend/day trips and trips to the pantomime.
  • Lottery.  Now generating funds for the EDKPA.
  • We provide financial support members taking part in the transplant games (4 this year)
  • We pay for an interrupter for a young deaf boy to take part in the annual activities weekend £350 (That is half the cost, Kidney Care pay the other half.
  • We have a fund which we can help patients quickly.