…what I am shown, I remember.
…what I do, I understand.’
Confucius was credited with many words of wisdom in his 72-years. I couldn’t vouch for the authenticity of them all – but if he did utter these words he was indeed a man before his time.
The truth behind these words was apparent to me at our recent Kidney Care Planning Education day. The Kidney Care Planning Service has undergone a bit of a re-incarnation in the last couple of years. Formerly known as the Pre-dialysis service, it is simply the care of patients with an eGFR of less than 20mls/min, as they are more likely to progress to end stage kidney failure and need to plan for such an eventuality. However, the term ‘pre-dialysis’ implies that these people are all heading towards dialysis – when in fact many will choose an alternative path. The younger fitter patients should be hoping to get a pre-emptive kidney transplant from a relative or friend, while some of our elderly, frailer patients may well not benefit from dialysis at all and will survive just as long on conservative (nondialytic) care. So when Tanya Harkness took up the mantle of lead Nurse for the pre-dialysis service, she quite rightly felt a new name was required. Many renal units use the term Low Clearance Clinics, but a straw poll of non-renal staff suggested this was more reminiscent of a rehabilitation clinic for inattentive bus drivers… So, after much discussion amongst the renal team, the more accurately named Kidney Care Planning (KCP) service was born.
The aim of the service remains unchanged and while we do take bloods and treat symptoms, easily 80% of what we do is talk. More specifically we provide as much information as we can to help every person decide which treatment option is going to suit them best. We do this with clinic visits and home visits. We provide information leaflets, website addresses and even YouTube videos – all with the aim of imparting information. Yet still we are sometimes asked a question that blindsides us – that either leaves us thinking ‘How did you not know that from all the conversations we have had?’ or ‘Crikey- that’s a good question that I have no idea how to answer!’ Because at the end of the day none of us handing out this information have ever experienced what they are going through – the actual treatments, the fear and anxiety, the dread of what their lives will become or the understandable desire to block it all out and pretend it’s not happening.
Which brings me back to Confucius! The subject of teaching is vast, with as many different approaches as there are pizza toppings. Yet 500 years BC, Confucius nailed it with this simple truth – when we actually do something, we come to understand it. So who better to teach our patients, than other patients who have been in the same boat.
We have held education days in the past, usually in a hotel function room with talks given by members of staff. Tanya was keen to resurrect the concept, but made it quite clear from the outset that there was ‘No way on God’s earth’ I think was the phrase that she was ‘EVER’ standing up in front of a room full of people to give a power point presentation. (Why not, I have no idea as I am sure she would be excellent….but there we are!)
So a new format was devised between the whole community team – a less formal approach, like an open day, where patients could turn up and wander at will from room to room – talk to the team leads, watch demonstrations, see the equipment and most importantly meet other patients.
The date was chosen to coincide with a visit from Ewen Maclean, Kidney Care UK Patient Support and Advocacy Office, Scotland. Ewen, himself a renal patient, is a mine of information about the support available to kidney patients, grants and how to apply for them and the political landscape that shapes kidney care in the UK.
We no longer had need of a hotel function suite – if there is one thing we are not short of at Mountainhall it’s space! (And the parking is pretty easy too – sorry!!) So, we sent a personal invitation to all our KCP patients, laid on refreshments and opened up the old pre-assessment unit for the day.
The Renal Community Team (Left to right): Fiona Gardiner (Renal Dietitian), Robert McLemon (Transplant) Ian Mottram (Haemodialysis – both home and in-centre), Wendy Brown (Peritoneal Dialysis) Margaret McDonald (Clinic Health Care Assistant & Phlebotomist), Linda Stiff (Vascular Access), & Tanya Harkness (Kidney care planning).
As well as written information everyone had something practical for patients who attended and the responses we had were truly illuminating. Ian had a haemodialysis machine with all the lines and bucket of dialysis fluid set up and received the comment ‘Oh, I didn’t realise it would be so small-I assumed it’d be really big.’ And why not –historically dialysis machines took up a whole room, which must be a really intimidating thought if you are going to be hooked up to one- but it has NEVER occurred to me to comment on the size of a dialysis machine in my many dialysis related conversations.
Robert had asked 3 transplant patients, with more than 50-years of experience between them to attend. I am not sure if any of them showed their scars where the transplant was placed but they had experienced all the ups and downs of transplantation and immunosuppressants so there was no glossing over the bad bits.
Linda was showing patients how to feel their fistula and what to listen for – explaining how the noise it makes can change if a stenosis is forming – and she was able to give those with a fistula their own stethoscope to involve them in their own fistula care.
Our renal dietitian was also on hand to give practical advice on managing fluid balance, as well as providing visual aids on potassium, phosphate and salt restrictions-something that renal patients universally struggle with!
One of the biggest successes of the day came from Wendy who had persuaded one of her Peritoneal Dialysis (PD) patients & their families to come and chat so they finally actually knew what the PD catheter looked like when it was inserted and could see for themselves how an exchange worked. But more importantly they could ask someone having the treatment what it felt like, how it impacted on their lives, whether it interfered with their sleep, whether it actually helped! One of our patients who had been set on coming to the hospital for haemodialysis when his time comes, has now changed his mind. We have been sure for many reasons that he would be best suited to PD, but fear was driving his decision. One hour watching a gentleman of his own age performing an exchange and listening to his stories of how life continues almost as normal around PD, has achieved what 5-years of reassurance from us could not…
The feedback Tanya received was overwhelmingly positive, but patients are generally nice, so it is the more subtle signs that have persuaded us this is the right approach. The questions and comments patients have since made in clinic prove that they have valued and retained some of the information they learnt that day. One patient commented how reassuring it was to see dialysis patients who looked well and still lived a normal life. And I hope through this some of the fear for the future has abated.
I expect in the future we will still be blindsided by hitherto unasked questions, but it is not only the patients who are learning, as I finish with yet another Confucius quote:
‘He who knows all the answers, has not been asked all the questions!’
We would like to express our sincere gratitude for all the patients and families who came that day, especially for those who came to share their experiences with patients in the early stages of their kidney care planning journey. We are also grateful for the patients who gave their consent for us to take photographs and use them in this blog. We hope to make “Kidney Care Planning Education day” an annual event from now on.
Other useful renal websites:
Patient focussed resources:
Kidney Patients UK / The National Kidney Federation, the largest kidney patient charity in the UK, run by kidney patients for kidney patients, website provides lots of useful information.
Kidney Care UK – formerly the British kidney patient association, very helpful brochures available online.
Clinician focussed resources:
Renal Fellow Network – A USA based website with worldwide contributions distilling vast amounts of renal knowledge into bitesized articles, a great resource to start learning about renal medicine.
UKidney – online education on Nephrology, hypertension and kidney transplant.
#NephJC is a fortnightly Twitter-based Nephrology Journal club with visual abstracts, free access to the articles provided by major journals and regularly includes participation by the authors and other worldwide experts in the field.
This blog was written by Dr Alison Almond, Associate Specialist in Nephrology, with contribution from rest of the Renal Team, NHS Dumfries and Galloway.