Kidney Matters - Issue 11 Winter 2020

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36C O N T I N U E DSince my initial diagnosis in 2010 Donna and I havemanaged to climb 150 mountains together, whichinclude half of the Lake District—that’s most ofWainwrights*—as well as Ben Nevis, Snowdon andScafell Pike. Even now that I have started my peritonealdialysis (PD) journey I aim to climb even more. Justrecently, at 8% eGFR I completed a six-and-a-half milehike. Only to be called in the very next day for my PDtube to be inserted.Although this is my illness, it just doesn’t affect me, itaffects Donna too. Yes, I deal with the CKD and it is withme 24/7. But Donna is right behind me at every stage:attending appointments, organising storage and justgiving me that support that I need. I believe if you havethis, then you have already won half the battle. Also, thesupport that Kidney Care UK have given both of us hasbeen amazing and I can honestly say if it wasn’t for them,their knowledge and patient network we would be lost.I am apprehensive about the next stage. I think that’sthe honest answer. However, I know once I get used tothe changes in routine and those PD ‘exchanges’ mylife WILL go on. I hope to continue with my Wainwrightbaggingand have joked with Donna, saying that myambition is to bag the other half (107) whilst on PD!Like many others in my position, I am now awaiting ‘thegift of life’ and just hoping that I’m fortunate enough toreceive this soon.I hope this proves to you that anything is possible - keepchasing your dreams!*A hill is said to be a Wainwright if it is one of the 214 Lake District fells described in Alfred Wainwright’s ‘A Pictorial Guide tothe Lakeland Fells’Kidney Care UK, Amjid Ali and ourinclusion listening eventsOne of the pillars of our work as a charity is to ensurethat no one faces kidney disease alone. We recognisethat so much more needs to be done to ensure that allkidney patients, no matter what community, religiousgroup or culture they come from should be supportedequally and receive the same care.You may remember our captivating interview with AmjidAli in the spring 2019 issue of Kidney Matters, where wetalked about faith and community and how this impactsupon patients. So we are delighted to be workingwith him now to help ensure that every patient feelssupported by the Kidney Care UK.Amjid does a huge amount of work with NHSBT, andhas played an instrumental role in bringing togetherinfluential Muslim Islamic scholars and Imams, umbrellagroups, community organisations and clinical leads tolook at the challenges that need to be addressed tomove the organ donation debate forward.Continuing in this vein, Amjid, as Kidney Care UK BAMEengagement and inclusion lead, has been leadingon a number of listening sessions with healthcareprofessionals and community partners. As we go to printwe are lining up work on the final event of 2020, arguablythe most important, a session with patients and carers.Once Amjid and the team at Kidney Care UK have beenable to understand the outcomes of these events wewill look to ways that we can evolve to meet the needsof kidney patients from diverse backgrounds; developtools and resources to raise awareness of chronic kidneydisease (CKD) across all communities; encourage activeparticipation and decision making by patients with CKD;and improve patient information and resources. We willshare more information about this work in 2021.kidneycareuk.org
37Kidney Patient InvolvementNetwork (KPIN)Are you a patient or carer who is interested in using your own experience of chronickidney disease to become a patient leader and contribute to positive changes in allaspects of kidney care? If you are, we need you!Or are you a healthcare professional or researcherwho would like to offer involvement opportunities to awider range of patients and carers?If so, we’d like to invite you to join the Kidney PatientInvolvement Network (KPIN)! We are an inclusive,friendly network of kidney organisations, charities andindividuals who are committed to working togetherfor quality patient and public involvement andengagement (PPI/E).As a patient or carer member of KPIN, we will offeryou access to a wide variety of opportunities to beinvolved in a broad range of projects and events,from volunteering in your local renal unit, to sittingon a decision-making board or committee. Youshouldn’t worry if you’ve never done somethinglike this before, we will also provide you with lots oftraining, resources and support from other ‘expertpatients’. So, you can feel confident that your viewsand opinions will be heard.As a professional member of KPIN, we can allow you toshare your involvement opportunities with our patientand carer network. This will enable you to reachbeyond ‘the usual suspects’ and receive input frompatients and carers who otherwise may not have beenable to contribute.For more information, please visit usat the below links: Website:https://kpin.org.ukFacebook: www.facebook.com/KidneyPatientInvolvementNetworkTwitter: @KPIN_UKLEARN MORE
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Page 3 and 4: 3Welcome toKidney MattersWelcome to
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Page 9 and 10: LEARN MORE9the routine of dialysis.
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Page 15 and 16: 15Elizabeth Ward OBE 1926-2020Eliza
Page 17 and 18: 17cycling, out in their wheelchairs
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Page 33 and 34: 33Kidney Care UK working with theNH
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Page 39 and 40: Sign up foryour freecopyWhether you

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