Our collective Patient Voice is strong and powerful to effect change, behaviour and ultimately improvement

Nick Palmer, head of patient support and advocacy for Kidney Care UK

My name is Nick Palmer, I am Head of Patient Support and Advocacy for Kidney Care UK.

Importantly I am a kidney patient and bring my unique insight to add to the collage that already exists.

Living with kidney disease, its symptoms and side effects of treatment, is comparable to any other devastating disease, such as Cancer. At times it can be emotionally as well as physically crippling. We tolerate a great deal, often have a shopping list of co-morbidities and yet the acknowledgement of this by the wider public is often drowned out – as a community of patients we are patched-up and carry on.

Being a kidney patient is hard. We have to manage illness and disappointment. Education, career, social life, relationships, managing a home, managing finances, keeping our sanity and clearly keeping well and staying alive. But I am not a hero or a warrior. I’m determined, hopeful and importantly – resilient. Resilience is the key for kidney patients. With help and support, this is the trait that needs to be nurtured in all of us.

My journey began in 1996. I was in my final year of a geography degree in Newcastle when I was diagnosed with Nephrotic Syndrome. Something had not been right for many months – swollen legs and ankles – and only after many GP visits was my urine dip-sticked finally, and I spent a few days in hospital having tests. I completed my degree the following year on a cocktail of tablets, with an accompanying moon face.

The following years were difficult and challenging – a young adult in out-patients surrounded by an older, seemingly more ill population of patients – I was forever bringing in 5 litre bottles of urine! I suffered with physical symptoms of gout, tiredness, deep vein thrombosis, oedema, anaemia – whilst managing a full time job.

I also suffered with the mental issues, which on reflection I had no support or access to help that I could see. I was upset, had loss of confidence, issues of body image due to oedema, lack of energy – I watched friends get on with life, whilst I was frozen. It was soul destroying.

Nevertheless, I somehow, bounced back from every knock back, reset my sights and carried on.

By the summer of 2000 I was being prepared for dialysis; after a conversation about peritoneal dialysis I opted for haemodialysis and my fistula was created in the July.

I returned to full-time work and to my part-time university studies, for a Post Graduate in Urban & Regional Planning and carried on always with the hope of a transplant to relieve me from dialysis and transport me to Utopia…

It was testimony to the team that looked after me under the care of the Manchester Royal Infirmary that I was able to get back to running, accomplishing the Manchester 10k in 2005 & 2006, followed by the Wilmslow Half Marathon in 2006 in 2 hour 10 mins – all whilst on dialysis.

So after a deceased donor transplant in 2006 and a living donor kidney transplant from my wife I returned to dialysis just over a year ago. It was a hellish experience with a rapid reduction in kidney function over 3 months. It was an unfortunate and sad relief to return to haemodialysis.

I returned to a dialysis ward which felt like an utter kick in the teeth. I was a shell of my normal self, physically and emotionally broken. Filled with grief and guilt, bereft of hope and positivity.

Access to a counsellor was swift and helped.

Two dialysis sessions later and I was in the comparable comfort of the home training room at Borough Kidney unit near Guy’s Hospital.

I had known for some time I would do home dialysis and asked for it straight away. I’m exposed to all the education one would need, but seeing home haemodialysis patients, listening to their stories and seeing how well they are and look – it really is a no brainer.

Preparation in making decisions is really important. The unit was dedicated to home haemodialysis, it felt safe and welcoming, I was given time. I was given opportunity to fail and try again. I talked to other patients who were training.

The one thing that did upset me was a recently transplanted patient visiting the training unit – whilst I was clearly big enough to understand it had the unfortunate result of making me feel second rate. But I was supported. Support of the hospital, family – we moved house, a flexible employer; technical support of the hospital.

Managing the needs of my daughter and wife and being available as a father and husband in mind and body is an ongoing challenge. Competing for time in the evenings to be available to cook, to bath my daughter and put her to bed, to relax with my wife.

The transition to nocturnal dialysis, 7.5 hours every other night feels so difficult. I know this is the regime that will ultimately give time back and transform my health to another level, however I sleep lightly and thrive on good sleep. Each time I try I encounter difficulty.

First it was feeling awful, so we changed the SAK type. Then I had issues with my fistula and wrongly thought I could not dialyse at night with a sharp needle. Then it was my work or life schedule that would not permit feeling washed out and with no sleep. Then it was illness that cut short my attempt…

Back when I first set out on dialysis I knew nothing about cognitive behavioural therapy, mindfulness and compassionate reflection. My resilience was born out of a competitive nature rather than any soul searching – although being brave, asking for help and being vulnerable is clearly at the core of resilience. Knowing that there are days you will fail but to keep on trying is what we should all be doing.

That’s easy to say. Psychological support is variable at best. We need to do so much for our patients in terms of psychology and welfare support if we are to achieve a greater, sustained shift to home therapy. And importantly make sure home therapy patients have the support to keep them at home.

All experiences need to be shared, good and bad if we are to encourage a culture where home dialysis is the first option.

Mine is one of many voices. Used correctly, our collective Patient Voice is strong and powerful to effect change, behaviour and ultimately improvement. We’ve heard before of the power of patients demonstrating increased involvement in shared care to their peers. Home therapy patients need to be visible. If we are to have a change in culture, their stories need to be heard more and more, and these patients need to be embedded into peer support programmes. We need to share the success stories to illuminate the possibility that going home is real.

Everyone is different and shaped by different backgrounds – diagnosis, culture, language, age, sex and ethnicity all play a part. So the need for representation either from individuals or through groups is pivotal to supporting the shift and culture change.

Using the support of our National Advocacy Service enables engagement with exceptional support based on patient/carer insight. This support is independent and compassionate.

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

Finally – the list below are all of the other important things that are necessary for me to live well. As patients, just like any one of you, we have a myriad of spinning plates interwoven on top of keeping well through dialysis.

• CONFIDENCE
• FAMILY SUPPORT
• FRIENDHSHIP SUPPORT
• JOB
• MONEY
• RELATIONSHIPS
• HOME
• HOLIDAYS
• SOCIAL LIFE
• PSYCHOLOGIST/COUNSELLOR
• UNDERSTANDING
• EXERCISE
• WIFE
• DAUGHTER
• MUM
• FAMILY
• FOOD
• MUSIC
• THEATRE
• FILM
• ART
• SPORT
• MUSIC

Nick Palmer, Head of Patient Support and Advocacy for Kidney Care UK