{"id":5951,"date":"2019-06-15T11:24:40","date_gmt":"2019-06-15T10:24:40","guid":{"rendered":"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/?p=5951"},"modified":"2019-06-15T11:26:11","modified_gmt":"2019-06-15T10:26:11","slug":"our-collective-patient-voice-is-strong-and-powerful-to-effect-change-behaviour-and-ultimately-improvement","status":"publish","type":"post","link":"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/blog\/our-collective-patient-voice-is-strong-and-powerful-to-effect-change-behaviour-and-ultimately-improvement\/","title":{"rendered":"\u201cOur collective Patient Voice is strong and powerful to effect change, behaviour and ultimately improvement\u201d"},"content":{"rendered":"\n
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My name is Nick Palmer, I am Head of Patient Support and\nAdvocacy for Kidney Care UK.<\/p>\n\n\n\n

Importantly I am a kidney patient and bring my unique insight\nto add to the collage that already exists.<\/p>\n\n\n\n

Living with kidney disease, its symptoms and side effects of\ntreatment, is comparable to any other devastating disease, such as Cancer.  At times it can be emotionally as well as\nphysically crippling. We tolerate a great deal, often have a shopping list of\nco-morbidities and yet the acknowledgement of this by the wider public is often\ndrowned out \u2013 as a community of patients we are patched-up and carry on.<\/p>\n\n\n\n

Being a kidney patient is hard. We have to manage illness\nand disappointment. Education, career, social life, relationships, managing a\nhome, managing finances, keeping our sanity \nand clearly keeping well and staying alive.  But I am not a hero or a warrior.  I\u2019m determined, hopeful and importantly –\nresilient.  Resilience is the key for\nkidney patients. With help and support, this is the trait that needs to be\nnurtured in all of us.<\/p>\n\n\n\n

My journey began in 1996. I was in my final year of a\ngeography degree in Newcastle when I was diagnosed with Nephrotic Syndrome.\nSomething had not been right for many months \u2013 swollen legs and ankles \u2013 and\nonly after many GP visits was my urine dip-sticked finally, and I spent a few\ndays in hospital having tests. I completed my degree the following year on a\ncocktail of tablets, with an accompanying moon face.<\/p>\n\n\n\n

The following years were difficult and challenging \u2013 a young\nadult in out-patients surrounded by an older, seemingly more ill population of\npatients \u2013 I was forever bringing in 5 litre bottles of urine!  I suffered with physical symptoms of gout,\ntiredness, deep vein thrombosis, oedema, anaemia \u2013 whilst managing a full time\njob.<\/p>\n\n\n\n

I also suffered with the mental issues, which on reflection\nI had no support or access to help that I could see. I was upset, had loss of\nconfidence, issues of body image due to oedema, lack of energy \u2013 I watched\nfriends get on with life, whilst I was frozen. It was soul destroying.<\/p>\n\n\n\n

Nevertheless, I somehow, bounced back from every knock back,\nreset my sights and carried on.<\/p>\n\n\n\n

By the summer of 2000 I was being prepared for dialysis;\nafter a conversation about peritoneal dialysis I opted for haemodialysis and my\nfistula was created in the July.<\/p>\n\n\n\n

I returned to full-time work and to my part-time university\nstudies, for a Post Graduate in Urban & Regional Planning and carried on always\nwith the hope of a transplant to relieve me from dialysis and transport me to\nUtopia\u2026<\/p>\n\n\n\n

It was testimony to the team that looked after me under the\ncare of the Manchester Royal Infirmary that I was able to get back to running,\naccomplishing the Manchester 10k in 2005 & 2006, followed by the Wilmslow\nHalf Marathon in 2006 in 2 hour 10 mins – all whilst on dialysis.<\/p>\n\n\n\n

So after a deceased donor transplant in 2006 and a living\ndonor kidney transplant from my wife I returned to dialysis just over a year\nago. It was a hellish experience with a rapid reduction in kidney function over\n3 months.  It was an unfortunate and sad\nrelief to return to haemodialysis.<\/p>\n\n\n\n

I returned to a dialysis ward which felt like an utter kick\nin the teeth.  I was a shell of my normal\nself, physically and emotionally broken. Filled with grief and guilt, bereft of\nhope and positivity.<\/p>\n\n\n\n

Access to a counsellor was swift and helped.<\/p>\n\n\n\n

Two dialysis sessions later and I was in the comparable\ncomfort of the home training room at Borough Kidney unit near Guy\u2019s Hospital.<\/p>\n\n\n\n

I had known for some time I would do home dialysis and asked\nfor it straight away. I\u2019m exposed to all the education one would need, but\nseeing home haemodialysis patients, listening to their stories and seeing how\nwell they are and look \u2013 it really is a no brainer.<\/p>\n\n\n\n

Preparation in making decisions is really important.  The unit was dedicated to home haemodialysis,\nit felt safe and welcoming, I was given time. \nI was given opportunity to fail and try again.  I talked to other patients who were training.<\/p>\n\n\n\n

The one thing that did upset me was a recently transplanted\npatient visiting the training unit \u2013 whilst I was clearly big enough to\nunderstand it had the unfortunate result of making me feel second rate.  But I was supported.  Support of the hospital, family \u2013 we moved\nhouse, a flexible employer; technical support of the hospital.<\/p>\n\n\n\n

Managing the needs of my daughter and wife and being\navailable as a father and husband in mind and body is an ongoing challenge.\nCompeting for time in the evenings to be available to cook, to bath my daughter\nand put her to bed, to relax with my wife.<\/p>\n\n\n\n

The transition to nocturnal dialysis, 7.5 hours every other\nnight feels so difficult. I know this is the regime that will ultimately give\ntime back and transform my health to another level, however I sleep lightly and\nthrive on good sleep.  Each time I try I\nencounter difficulty.<\/p>\n\n\n\n

First it was feeling awful, so we changed the SAK type. Then\nI had issues with my fistula and wrongly thought I could not dialyse at night\nwith a sharp needle. Then it was my work or life schedule that would not permit\nfeeling washed out and with no sleep. Then it was illness that cut short my\nattempt\u2026<\/p>\n\n\n\n

Back when I first set out on dialysis I knew nothing about cognitive\nbehavioural therapy, mindfulness and compassionate reflection. My resilience\nwas born out of a competitive nature rather than any soul searching \u2013 although\nbeing brave, asking for help and being vulnerable is clearly at the core of\nresilience. Knowing that there are days you will fail but to keep on trying is\nwhat we should all be doing. <\/p>\n\n\n\n

That\u2019s easy to say. Psychological support is variable at\nbest. We need to do so much for our patients in terms of psychology and welfare\nsupport if we are to achieve a greater, sustained shift to home therapy. And\nimportantly make sure home therapy patients have the support to keep them at\nhome.<\/p>\n\n\n\n

All experiences need to be shared, good and bad if we are to\nencourage a culture where home dialysis is the first option.<\/p>\n\n\n\n

Mine is one of many voices. Used correctly, our collective\nPatient Voice is strong and powerful to effect change, behaviour and ultimately\nimprovement.  We\u2019ve heard before of the\npower of patients demonstrating increased involvement in shared care to their\npeers.  Home therapy patients need to be\nvisible.  If we are to have a change in\nculture, their stories need to be heard more and more, and these patients need\nto be embedded into peer support programmes. We need to share the success\nstories to illuminate the possibility that going home is real.<\/p>\n\n\n\n

Everyone is different and shaped by different backgrounds – diagnosis,\nculture, language, age, sex and ethnicity all play a part.   So the need for representation either from\nindividuals or through groups is pivotal to supporting the shift and culture\nchange.<\/p>\n\n\n\n

Using the support of our National Advocacy Service enables engagement\nwith exceptional support based on patient\/carer insight.  This support is independent and compassionate.<\/p>\n\n\n\n

Teams need to make sure they are communicating with these\nnetworks, and using them to engage with patients and to build relationship with\nthe Kidney Patient Associations.  Using\nthe networks that are available will drive change and increase capacity of\npatients to do things for themselves, to take control, be involved, become\nhappier, and ultimately, to dialyse at home and optimise their quality of life.<\/p>\n\n\n\n

Finally – the list below are all of the other important\nthings that are necessary for me to live well. As patients, just like any one\nof you, we have a myriad of spinning plates interwoven on top of keeping well\nthrough dialysis.<\/p>\n\n\n\n