Kidney Matters Issue 13 - Summer 2021

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26A gift in your Will helps us be there for kidneypatients today and into the futureA third of our charitable activity is paid for by legacy gifts. Without them we simplywouldn’t be able to support as many people with kidney disease as we do.If you’d like further information on leaving a gift to Kidney Care UK, call us on 01420 594 964Every gift makes a differenceDiary of a Kidney Warrior PodcastBy Dee MooreI became a Stage 4 ‘kidney warrior’ in 2018 and soon began a personal journey to helpme come to terms with, understand and manage my chronic kidney disease (CKD). Idecided to share my journey online and in 2019, started a vlog called ‘Diary of a KidneyWarrior’. Then in 2020, I started a podcast.I love the creative arts and I work for the NHS in Occupational Therapy,supporting adults with learning disabilities. My passion for the pastyear has been creating my podcast, ‘Diary of a Kidney Warrior’. At theheart of this project has been that, through a series of intimate andinformative conversations with key people in our kidney world, you toofeel inspired to thrive through your own kidney journey.I interview fellow kidney warriors and healthcare professionals alike,exploring all the issues we face. I believe that being both a kidneywarrior and healthcare professional gives me an advantage as this reallyis my lived experience.Every aspect of CKD is open for exploration in the podcast and I havecovered subjects such as mental health, sleep hygiene, understandingblood results, deceased and living organ donation, advice for newlydiagnosed kidney warriors, with new hot topics being added all the time.To listen to my podcast please join me at -Instagram @diaryofakidneywarrior • Twitter @diaryofakidneywwww.facebook.com/diaryofakidneywarriorwww.kidneycareuk.org
27Reviewing theresults of apandemic KidneyPREM 2020Co-designed by a group of patients,clinicians and academics the KidneyPatient Reported Experience Measure(PREM) is the annual survey which givesyou the chance to have a say about yourexperience of kidney care and help driveimprovements to local services.Shifting to digitalThe Covid-19 pandemic meant that 2020 was trulyan exceptional year, with many additional constraintsplaced on kidney centre staff and patients. To reducethe burden upon centres and in accordance withinfection control measures, the Kidney PREM surveywas hosted online only, rather than also providing paperquestionnaires. This saw an almost 700% increasein online responses, an excellent shift in engagementfrom the kidney patient community. The total numberof responses received for the 2020 Kidney PREM was9,645, including patients from all 70 adult renal centres,across 293 UK satellite units.Gaining valuable insightsThe Kidney PREM questionnaire is made up of 39questions about 13 aspects of kidney care, includinginformation, diet and fluid, transport and overallexperience of care. Questions are designed to beanswered by all patients, no matter where they areon their kidney care journey. A benefit of hosting thesurvey online this year is the improvement in dataquality (patients are led through the questions that arerelevant to them, and cannot miss questions) and allhad the opportunity to leave their own feedback in thefree text box, resulting in almost 4,000 comments oncare. The insights gained from this feedback is reallyvaluable in helping to improve services.This year, a group of kidney patients worked with theKidney PREM Working Group to design four additionalCovid-19 specific questions (including what was good /bad / could be improved about your kidney care) whichare being analysed separately to better understandand learn how the pandemic impacted the experienceof kidney care and what learning and experience canbe shared between patients, centres and the nationalkidney community.Patient experience in 2020Whilst this year’s Kidney PREM data collection, analysisand reporting have been undertaken with the usualrigour, caution should be applied when comparing thisyear’s results to previous years. This is partly becauseof the changes in normal care processes – for exampletransplant lists suspended, changes to transportation,virtual clinics and increased infection control measures- but also because the number of patient responsesat some centres changed a lot, and this can have aninfluence on the average scores of units.Encouragingly, despite all the challenges ofexperiencing care during a pandemic, most patientscontinue to rate their overall experience of kidney carehighly, with an average score of 6.2 out of 7.“Most patients continueto rate their overallexperience of kidney carehighly, with an averagescore of 6.2 out of 7.“Looking aheadExperience is a really important part of kidney carequality; the wide variation in scores between centresmeans there are opportunities for kidney servicesto hear from each other how they have tackled thechallenges of providing kidney care during a pandemic.The Kidney PREM team will be looking at ways to supportkidney teams and patients to learn from and act on thesurvey findings. You can ask your kidney team aboutyour unit’s PREM results, find out if they are creating anaction plan for improvement and get involved.The Kidney PREM team want to look at more ways toengage the most underrepresented groups, includingthose who are transplanted, dialyse at home oridentity as Black, Asian and other minority ethnicities.An inclusivity working group has been establishedand we are inviting you to share your suggestionsand ideas about how we can better raise awarenessand involvement with the Kidney PREM across theseparticular groups of people. If you would like to getinvolved or send us your feedback, please emailcomms@kidneycareuk.org with the subject KidneyPREM.To view the Kidney PREM 2020report, go towww.kidneycareuk.org/prem-2020LEARN MOREIssue 13 | Summer 2021
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