RFHKPA

Welcome to your Kidney Patients’ Association website

The Royal Free Hospital Kidney Patients’ Association (RFHKPA) is a registered charity (number 277711). The association is run entirely on a voluntary basis for the benefit of renal patients and membership is open to all Royal Free London renal patients

The RFHKPA represents the interests of and raises issues on behalf of Royal Free London renal patients. We have patient representatives in satellite units at Edgware Kidney Care Centre, St. Pancras Kidney and Diabetes Centre, Tottenham Hale Kidney and Diabetes Centre and Barnet Dialysis Unit. RFHKPA provides advice and directs patients to appropriate services or organisations. We work closely with social workers to provide funds for patients with hardship problems.

This website has been produced so that the RFHKPA can provide information to all renal patients and their families. The Menu structure at the top of the Home page has drop-down lists to be used to find this information. If there is anything you cannot easily find from these lists, you can use the Search function,. The Search symbol, shown below, is at the right-hand end of the Menu bar. Enter a key word or two there, to get a list of the articles and/or websites referring to these terms.

A Message from RFHKPA President, David Myers BEM

What RFHKPA is doing to continue to represent our fellow kidney patients

We continue to consider requests for grants for patients who are deemed to be in need of help in areas like financial help for those patients who are waiting for benefit entitlements. These requests usually are presented to us by the appropriate lead clinicians or lead nurses. We have also provided help for patients who have need for medical equipment while dialysing at home. Nii Plange, our KPA Chair and I, continue to discuss with the other KPA Trustees and the renal team what help can be given to patients who will be struggling during the coming months, due to rising costs.

Non-emergency Patient Transport issues

We always keep in touch with the Royal Free Transport team and we are directly in touch with representatives at the transport provider, DHL.

I can assure patients that when we are given accurate dates and times of unreasonable transport delays, we ask either the transport team or DHL to respond to the concerns raised.

I can also assure everyone that the Royal Free renal team do everything within their remit to demand improvements on behalf of patients, but the truth is that the North London Commissioning group just does not have enough money available currently to improve the service.

The transport service is simply not consistent enough for most patients. The KPA does what it can to make the transport provider understand the inconvenience and frustration caused by patients having to experience waits of two hours and more. In particular, I have been pressing DHL to consider creating a Task Force to concentrate on elderly and frail patients so that patients don’t have to suffer as they currently do, often getting home late, missing their evening meals and/or missing the help of their carers with late night care. We also make the point that patients with diabetes are at risk if they miss their meals. DHL are investigating this internally and will come back to the KPA soon.

Are there patients willing to help their fellow kidney patients?

Because of the long period of time that Covid affected the way in which the hospital has been running, the KPA and its unit representatives have not been as visible as previously, over the last two years. There are many kidney patients in our satellite units who either don’t know that the KPA exists or know what the KPA does. I assume that registered members of the RFHKPA are at least aware that RFHKPA does exist!

But we really need more help from patients, to be able to pass the message on about how our organisation can benefit fellow patients. We need better representation in all satellite units. So, if you think you can help, even just a little bit, please get in touch with us and tell us about yourself and what you can offer. Send us an email at rfhkpa@gmail.com. We are looking for people with enthusiasm, ideas and the desire to help. You can get a lot of personal pleasure from playing your part in helping others. Please get in touch.

If you have any renal subject you want information about, or you have concerns about elements of your care, please also send us an email; if you are going to attend the KPA Members meeting on 20th September, you can ask the question yourself, live.

Opportunities to help your KPA

Our KPA membership continues to grow and we are looking for much needed voluntary help to aid our administration.

We require a minute taker for our members and trustee meetings. If you have experience in this area, you would be greatly welcomed by our leadership team. Please get in touch, via email:

rfhkpa@gmail.com

Do you agree with organ donation and want to help make a change?

If you do, the Royal Free London GIVE-IT Project is looking for enthusiastic African, African-Caribbean and Hindu, trailblazers willing to take a stand by volunteering to help raise awareness for organ donation.

If you are interested, please click on the link below for more information:

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For more information on the GIVE-IT Initiative, please click the link below:

Sally Hamour, the Royal Free’s Clinical Director Nephrology, Urology, Transplantation advises renal patients to join the RFHKPA

Dr Sally Hamour FRCP, PhD, Divisional Clinical Director Nephrology, Urology, Transplantation, Royal Free London:

“It is important for patients to join the RFHKPA. There are lots of different ways to influence development of the Royal Free London’s renal service, but one of the most effective is joining the KPA, because their voice is heard. Over the years the KPA has been instrumental in advising on the Trust’s plans to provide renal services that work for our patients. The KPA helped choose the locations and layouts of our new dialysis units, how we use transport, supporting our education and information programmes, advertising what is new, and explaining what is happening for patients using our service.”

Chairman’s Update – Nii Plange

RFHKPA Chairman Nii Plange

Our last printed RFHKPA Newsletter was published in April 2018 and we are very grateful that we have a dedicated team who have created our new website. We now are able to bring you the latest news and information from the Royal Free and its satellite units along with relevant information from the renal world which we hope that all of you will find something of interest on these pages. I am also pleased to tell you that the RFHKPA have dedicated Notice Boards in our Royal Free, Tottenham, St. Pancras & Edgware units. Barnet will follow in due course once we have found the appropriate space. …

President Update – David Myers

Welcome to our RFHKPA website. We are here to provide help and direct patients with concerns in the right direction to where they can get answers. We are also able to provide financial help to patients with hardship problems. And we organise social events for our members throughout the year, once circumstances allow us. You will see there is an awful lot of kidney information to be found on this website.