‘What I am told I forget…… by the Renal Team

…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.

Think Kidneys – NHS England’s campaign to raise awareness of the importance of kidney disease. Lots of useful resources can be accessed with just a few clicks from this page.

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.

 

Towards a world free of kidney disease….. by Nadeeka Rathnamalala

10^th of March 2016 is World Kidney Day. Many activities take place around the world to raise awareness of risk factors for kidney disease, encourage systematic screening for high risk groups, encourage transplantation and advocacy of governments to take action and invest further in screening and treatment. Despite these efforts especially by organisations like World Health Organization (WHO) and International Society of Nephrology (ISN) we are still not equal in terms of access to treatment.

Sharing my own experience would perhaps shed more light on this. Having done my initial training in general medicine in Sri Lanka I came to the point where I had to undertake further post graduate studies in a subspecialty in Medicine. When I picked renal medicine, the common response from members of my family was “Are you sure?” Kidney disease outcomes were perceived as being worse than cancer due to limited access to dialysis. When I started my training in 2010 there were only 90 functioning haemodialysis machines in government hospitals in Sri Lanka for a population of 20 million (estimated prevalence of Chronic Kidney Disease (CKD) between 4-8%). Haemodialysis had been first introduced to the country in 1983 and attempts to introduce Chronic Ambulatory Peritoneal Dialysis (CAPD) had not been successful as the cost was much greater than the cost of in centre haemodialysis given that no plants for PD fluid production were in the region. Live donor transplantation was an available option but limited by long waiting lists in the government sector and availability of donors. I went through my training attending on patients who would present breathless with fluid overload due to ad hoc haemodialysis. The limited dialysis slots had to be prioritised according to the severity of symptoms. When I came over to the UK to complete my training in nephrology I was amazed by the free and unlimited access to renal replacement therapy. What was more they were transported back and forth from the dialysis centre at no personal cost!

On my return to Sri Lanka in 2013, to take up my first job as a consultant I was hit hard by the reality. I was appointed to be the only nephrologist in the southern province of the country to provide care for a 2 million population. I was to be based in the tertiary care centre in the region with 7 haemodialysis machines and facilities to perform a live donor transplant every fortnight. I also had funds to have a further 10 patients on CAPD. The hemodialysis machines were working around the clock and at any given time a couple of machines would be having technical faults leaving me with five functional machines at a given time. The total number of patients registered in the clinic was just above 1000 (at least 150 end stage renal disease requiring dialysis) and there would at least be another 5 to 8 in patients requiring dialysis in the hospital. The way I could prioritise was to give preference to the patients with acute kidney injury (with the hope they would recover) and those awaiting live donor transplantation. Everyone else who did not have a plan but were in end stage renal failure had to be fitted in to the left over slots. Despite our best efforts many patients lost their lives due to inadequate dialysis.

That is the heart sinking story of kidney disease in the developing world. 80 % of the dialysis population is in Europe, North America and Japan while the rest of the 20 % is distributed in the vast regions of South America and Asia. These figures are a reflection that dialysis is a luxury mostly the rich can afford. Though disparities in renal care are greater in the developing world, there is data to support inequalities in provision of care to the more disadvantaged populations in developed countries. For example, in the United States ethnic minorities have a higher incidence of end stage renal failure while in Australia figures show that aboriginal Australians are 4 times more likely to die of CKD than the non indigenous Australians.  

Concerted effort on prevention and early detection would be the way forward to minimise these disparities in the future. World kidney day is a global awareness campaign that aims to do just that. This year the theme is “kidney disease and children – act early to prevent it” and aims to highlight the importance of protecting kidneys from an early age. We hope to have a booth in DGRI on 10^th March to hand out leaflets and badges to join in this world wide effort of raising awareness of kidney disease. We hope that staff as well as visitors will take the time to come visit us and support the world kidney day initiative.

Dr Nadeeka Rathnamalala is a Locum Consultant Nephrologist at NHS Dumfries and Galloway