About us
The object of the Association, as stated in our constitution, is the relief of persons who are suffering from disease or illness affecting the kidneys; especially for patients receiving treatment at the Exeter Kidney unit and its satellites.
Thus we:
• support research into kidney disease and its treatment
• provide financial support and practical assistance for kidney patients and their immediate families according to needs
• contribute towards the purchase of equipment for the treatment or benefit of kidney patients.
• support social events
• provide a dedicated advice service for patients through Citizens Advice in Exeter
We are dependent on donations and legacies to continue our work and extend our gratitude to all our donors.
Our membership has grown over the years from just 28 to almost 400. The & “District” covers a wide area including all of Devon (excluding Plymouth) and most of Somerset.
It is largely rural therefore transport issues are of particular importance to our members. We are able to help sort out transport problems as quickly as possible and have assisted in the roll out of the personal transport budget scheme – putting patients in charge rather than the NHS.
Jean Aplin our Secretary has supported the association since 1972, she has greatly helped to build up our reserves from fund raising activities and events. In addition, people have kindly left us legacies in their wills through fund raising websites - our current one is with JustGiving.
Committee members, past and present, have wisely invested these monies over the years. This means we have been able to assist patients experiencing hardship in our area who suffer from all forms of kidney disease, by spending both the capital and income from these investments.
The EDKPA have always been pleased to respond to requests from the RD&E kidney unit, for funding support for various items which include: recliner chairs, exercise bikes, cushions, televisions and training aids.
Helping patients in need
We also use our funds to try and fill in the gaps missed by the NHS. This includes the purchase of TVs, TV remote controls, hospital equipment and the funding of a specialist nurse for children and young adults.
We write and distribute regular newsletters informing patients of social functions, grants for members finding it difficult in making ends meet, subsidised trips, patients’ experiences/stories as well as new recipes and much more!
This year we are looking to increase our ability to make more financial grants for patients in need.
Our team relies exclusively on volunteer help. We are always looking for volunteers, a little help often goes a long way so if you have some free time available please do get in touch, we'd love to hear from you.
The committee is a mixture of patients, carers, and kidney staff who meet up six times a year.
Chris Rolfe
Chairman
Chris lives with his wife Jenny in Torquay and spends much of his time looking after their somewhat mountainous garden...
He enjoys walking, music, target shooting and model engineering but has limited time for these interests, spending five days a week on haemodialysis at home, five hours at a time.
Chris was first diagnosed suffering from Focal Segmental Glomerular Sclerosis at the age of 50. He was able to take early retirement from his job as an accountant and remained reasonably well until 2020 when he began dialysis.
Chariman of the local kidney patients’ association, Chris is also a trustee with Kidney Research UK and a peer group supporter for home haemodialysis patients with the National Kidney Federation and our local hospital.
Joanne Robbins
Secretary
Joanne was very pleased to join the EDKPA committee in late 2021 and has recently taken over as Secretary from Jean Aplin, who had been a devout member of the association for several decades and will certainly be a hard act to follow!
I’m Joanne Robbins (formerly Campbell). I retired in the summer of 2021, it was always my wish to be able to give something back, in some way or another.
Some 40 years ago my late husband Peter Campbell went into renal failure, after learning the ropes from the nursing team Pete dialysed at home with my help, it was the best way we could manage, being newly married and keeping Pete’s studies and my job in a bank going too.
Over the years that followed Pete received a transplant from his brother, a strapping rugby player at the time! Two years later our son Josh was born: we were on top of the world, so fortunate and great to see Pete’s energy and drive return. Now a fully qualified designer, Pete set up a business and when it grew, I joined the work force too.
Time passed by and several years later Pete was back on dialysis, CAPD this time. He took his bag exchanges to work with him!
We worked hard and our business became more successful, our team grew. Employing talented developers and designers, we were soon creating 50 -100 websites a month from our head office in Torquay, with franchisees creating sales far and wide, from Cornwall, Hull, London, and even Dublin!
Sadly, Pete didn’t live to see Josh graduate from University, or live long enough to know what a successful company we’d grown when I finally retired some 12 years later. I’m happy to know however that he lived life for the day: he achieved things we never thought would be possible, he was both inspirational and courageous, despite the limitations he lived with.
A lot of that was due to having the security of a caring renal team at the RD&E and knowing what other kidney patients had achieved and going for it!
I’m very happily remarried now however, I have never forgotten the
challenges of kidney failure and the wish to help others like us.
Please do let me know about your challenges and accomplishments that we could share with other kidney patients by emailing me your stories at: admin@edkpa.org.uk.
Other Team Members:
Ria Taylor | Nick Wood | Danny O'Sullivan | Jackie Garry | Jean Aplin | Keith Forbes | Richard Garry
Trish Yearwood | Sarah Fowliss
Get in touch
If you have any suggestions regarding what we could do that you feel would be beneficial for the members as a whole, please let us know.