The RFHKPA relies on volunteers to keep it going. People already help in a number of areas (see below), but we always need more help. We need people to support the work we do to in order to provide direct assistance for our patients:
- Fundraising/Raising awareness
- Becoming a Patient Representative for one of the Units
- Joining the Committee
- Helping to keep the website up to date
- Mentoring/befriending patients
- Helping with RFHKPA events
You do not need to know much about any of these areas as most of what we do is a group effort and sometimes it is just important to have enough people to run things smoothly.
COVID-19 and Committee Meetings
At the present time we are unable to run many of the events that are usually part of our year’s calendar. As soon as restrictions are lifted we would like to be ready to reinstate these events with possibly some new ones. It does mean that as a committee we need to be more creative in thinking up ways to promote both our fund raising and raising awareness within the public domain. Any ideas would be gratefully received.
We have further opportunities for volunteering to help your KPA in the following areas:
This can be virtually anything! It can be a coffee morning, an event at work or helping out at the many events people normally put on throughout the year. Helping to raise awareness includes getting the message over to the public about the issues surrounding Transplantation, Donation and Dialysis and the benefits they provide. There are many national and world events, such as World Kidney Day, the British and World Transplant Games and Transplant Awareness week. We also have more local events in the RFL or Units (shops, shopping centres, fairs etc) where we put up a stall and invite the public to see what it’s all about.
Normally, anything goes, tombolas, raffles, tea parties, dinners or being sponsored to take part in a marathon or other sporting event.
We also appreciate new ideas from members, so put your thinking caps on and help us to help you.
All you need to help with this are enthusiasm, a smiling face and a desire to help other people. There are so many types of events that it’s difficult to generalise, but lots of enthusiasm seems to be the main requirement! For raising awareness, You do not need to know every detail, because there will be other people who can help, but a willingness to engage with the public is important.
Becoming a Patient Representative (Rep)
If you are receiving treatment at one of the units and would like to help then offering to be a Rep is very useful. The Reps are a contact point for all the patients and the staff in their unit. They will collate any comments or questions and pass these on to the Committee. The Reps also work with the Committee to help organise and support the RFHKPA’s events such as day trips, tea parties and Christmas parties for the units.
Reps may sit as members of the Committee, if they wish.
If you would like to become a Rep, please send an email to:
Joining the RFHKPA Committee is also useful.
Committee Meetings are usually held on the first Monday of every month in the RFH at 7pm. However, due to the current situation with COVID-19 precautions, our meetings are being held online for the foreseeable future. Currently our meetings take place via Zoom, starting at 6.00 pm and finishing at 7.30 pm.
RFHKPA Members are encouraged to attend our Committee meetings.
If you would like to attend a Meeting or to become a member of the Committee (which entitles you to vote at the Meetings), please send an email to:
and login details for the next meeting will be sent to you.
Please join us and see how you can help.
RFHKPA Website maintenance
It is necessary for our RFHKPA website to be kept up to date
To help with this, a little experience in web editing would be useful. However, if you can use Word, you should be OK, as the website content management system has a simple web editing interface which makes it easy to add and change pages, add photos etc. If you are interested in this, please let us know using the email address:
If website upkeep is not to your liking, we still need articles and stories relevant to the renal patient experience. If you have anything you feel would be of interest to other patients, then please send it to us using the email address:
This can take a number of forms, from visiting patients while they are on dialysis or simply meeting up with a group of members in a café (one patient already does this very successfully). If you are a patient or know about dialysis/transplantation, you could mentor people in the RFHKPA.
Having kidney disease can be very isolating, but the Royal Free London is determined that their patients will get the help and support they need … with the help of other patients.
The lead nurse for the Trust’s chronic kidney disease service, has spearheaded a project to embed peer support into patient care. While healthcare staff can inform patients about their condition and about the treatment available, they cannot offer first-hand experience and that’s where peer support can really help.
A working group was set up and patients keen to engage as peer supporters were invited to participate. The aim is to have 20 peer supporters, all with different experiences; some have already completed their training.
Patients will be able to self-refer to the scheme and leaflets signposting them will be available at dialysis units and clinics across the trust.
People can ask the questions they really want the answers to such as what’s the best way to tackle holidays on dialysis or how does a catheter feel? It enables patients to have an informal chat face-to-face or over the phone.
For example, a transplant patient can help enormously by talking with people who have just started dialysis. Also, many on dialysis already informally mentor other patients new to dialysis. It’s a difficult time, and mentoring can help people adjust to their new way of life.
If you feel that this is a role for which you would be suited please email the Peer Support on the email below:
If you are someone who would like to talk to another patient then use the same email address to ask for help or advice.