Chairman’s Update – Nii Plange

RFHKPA Chairman Nii Plange

Chairman’s Report to the 2022 Annual General Meeting of the RFHKPA.

We are still facing the smouldering effects of the Covid-19, making it difficult for us to return to face-to-face meetings, organising pre-pandemic events and visiting the units to help patients.

Unfortunately, we are now faced with a bigger problem of inflation which has resulted in the ‘cost of living crisis’. As a result our donation receipts on our media platforms were down. We benefited mostly from deceased patients who in appreciation for the work we do, made bequests and our regular well-wishers who made their periodic donations. It is however disappointing to report our donations were substantially down. Meanwhile, thanks to all those who donated to us.

I am proud to say however low our donations, the Association was able to meet our core responsibilities and patients were fully supported in all areas of concern. Among the support given were food vouchers and payment for items on medical grounds. Hard up patients who needed some money to tide them over due to benefit changes etc. were also supported. We referred new patients to our Camden Service to assist them in claiming their benefits and those with housing problems were equally assisted. We also supported some of our elderly patients with transportation to get home early so they don’t miss their carers. Patients were supported to go on holidays. We supported live organ donation and helped organise events towards such causes. We paid for the AV Equipment which is beneficial to the care of patients and our renal clinicians.

We have been asking for volunteers to represent the patients in our various units without any response. Due to Covid restrictions, we have not been able to visit the units to learn of issues affecting patients so the role of unit representation is very important. Any one who wants to volunteer can contact us on Presently, there is a position for a Meeting secretary. Please note all positions are voluntary and unpaid.

We have plans for 2023 to make our presence within the Royal Free Hospital renal community more noticeable and accessible for all our new patients as well as the old ones. We promised last year to rotate our meetings within our units. This hasn’t taken off due to the lack of unit representatives, staff shortage and clinicians availability. We are working on it.
I attended the Living Kidney Transplant Scheme Launch with David about organ donation. Other meetings attended were JHOD with David on live organ donation events planning, RF/KPA with David and Caryl to discuss issues affecting renal patients, NKF webinar, All Party Parliamentary Kidney Group & NKF – which is our renal national body with Caryl. DHL transport meeting with David, UKKA GFR Working Group, Mortality Surveillance & End of Life meeting with Funmi, the Patient Partnership Group with the trustees and the NKF Regional KPA London Network.

In the face of dwindling donations and increased spending our trustees stood resolutely to take
very hard decisions to once again deliver a sterling service to our members. I will strongly recommend that you vote to return the team to continue with the good work for another year.

We welcome our new patients with open arms and will ask them to register on our “membermojo” site. For those who passed away in 2022, we wish them a peaceful rest and thank their families for making donations on their behalf.

My special thanks go to Mr. David Myers BEM, who is our Life President, for all his guidance and encouragement throughout the year.

Our dedicated team have created our new website

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.

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. My 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

We support organ donation events

The association is very active supporting organ donation events to raise awareness within our communities. We try to inform and educate dialysis patients on the possibilities of getting a transplant.  We have played a part in organising an event within the black community at the COGIC church in Tottenham. This was advertised for patients to attend with friends and family and was well attended but more patients should have attended. The Live Donor Advocate Project led by Dr. Jeff Cove, was promoted in one of our 2017 newsletters, but very few of our patients seem to be aware of the project or the possibilities of living kidney donation.  

Also. Dr. Sarah Afuwape organised an event to raise awareness for young adults within the black community with the help of RFHKPA. The event and its message was widely seen on social media but I would have expected to see more of our patients attending.  We have two further projects on organ donation which we are supporting. A further project aimed at the black community and led by Sarah Afuwape. The second project is led by Dr. Phillip Masson which is aimed at increasing awareness of living kidney donation. This can lead to increased possibilities for our dialysis patients to have transplants with shorter waiting times.  It will be great to see more of you with your family and friends attending these events.

Thanks to all those who have helped in various ways to support the association. Thanks to all our donors for helping us to provide benefits for our fellow patients. And special thanks to all our consultants, nurses, dieticians, pharmacists, admin staff and support workers for helping us on our journey to a better quality of life.

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