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.

Membership of RFHKPA

You will all know that membership to RFHKPA is an issue that we keep repeating. It may be that new patients don’t know of our existence but there are many of you who know about us because you have benefited from the Association one way or another. Our message to those patients who are aware of the good work that we carry on, please tell your fellow patients to apply for membership. All patients are entitled to be members of the RFHKPA but if you don’t apply to be a member, then we don’t know about you.

The association can signpost patients to areas of support and assistance when the need arises. There are many occasions when patients come to us, when a small problem has become a serious one. If you come to us early, we may be able to assist you better. From 2020, patients who have registered with the association will be given priority, as they have consented for the Association to contact them and chosen their communication preferences. To join RFHKPA you can register here

Membership Renewal Notifications – An important reminder for all RHKPA Members

If you receive an email from the RFHKPA asking you to renew your membership, please do not ignore it. If you wish to continue being a member of the RFHKPA you must renew your membership when required, since membership registrations expire after 5 years, unless renewed.

To renew is very quick and easy. When you receive the email indicating that your membership is soon to expire and shows a renew link, just click on RENEW and, in a few moments, you will have renewed your membership completely free of charge for another five years.

However, if you have not renewed on receiving your final email reminder, the database automatically deletes your name and details from the membership list. This means that you will no longer be eligible for any of the benefits available to RFHKPA members. In this case and if you would like to renew, you will need to re-register as a new member. This is also a simple procedure, which is explained above.

Patient Representatives

Now that the Royal Free is allowing more patient access, following the pandemic, we are pleased to announce that our Patient Representatives (Reps) are once again able to be more active in the renal units.

For details of the current Reps and their contact details, please click on the link below:

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:

rfhkpa3@gmail.com

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. The KPA Trustees discuss with the renal team what help can be given to patients who will be struggling, 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.

We 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.

We 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, We 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 were not as visible as previously. There are many kidney patients in our satellite units who either don’t know that the KPA exists or know what the KPA does. We 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 rfhkpa3@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 AGM you may ask us in person.

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

Chairman’s Update – Nii Plange