Self Care Week Blog

 

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Previously published by NHS England on 19th November 2014

This week is Self Care Week and the theme this year is ‘Self Care for Life – Be healthy this winter’. Fortunately, for most of us, the practical side of Winter self-care is pretty straightforward:   Putting a little money aside for the heating bills, getting our winter clothes out, where appropriate, having a flu jab for ourselves or our young children and getting a stock of cold and flu remedies in -just in case.

But for those of us with a Long Term Condition, the self care skills needed over winter and b for life are often of a totally different order. For example, what would happen if our kidneys were failing fast now – how would our winter months pan out?

Well, the initial signs of failing kidneys can be confusing and seemingly random: a puzzling state of continuous lethargy, so much so that concentrating at work might become a real struggle; our shoes might feel more and more uncomfortable as our feet swell; our urine might change colour – even to a frightening, puce red as it did in my own case; other symptoms would begin to pop up here and there, almost at random, but more and more rapidly and few of them pleasant or easily manageable.

Our emotional wellbeing would be thrown into a state of fear, self-doubt and for some, total overwhelm. In fact, many of us might actually start to grieve for the life we have lost and for the imagined future life which now is so much in doubt. Almost overnight we would be forced to take care of ourselves to an unprecedented degree, yet even as we strive to do this, our life itself spins more and more out of our control.

Unless we can cook two dishes at each meal, we and our family will need to adjust our diet and fluid intake dramatically in a way that seems to squeeze all the fun, taste and flavours out of every meal. We will also have to start taking a whole range of medications some of which will have unpleasant side effects equally as onerous as the symptoms they are designed to treat.

Almost certainly, by this stage, we would be in a kind of daze and yet, despite, this, the first real shock to many of us would be the need to take time off work or even resign from work to care for ourselves to an even greater degree: our doctor tells us we need to undertake a gruelling new treatment three times a week: we need to go on a kidney machine!

As the days grow shorter into the winter months, we would find ourselves spending most of our daylight hours every other day in a strange and unfamiliar ward. For some of us, it feels as if we have entered an alternative reality, with a dozen or more patients aligned up and down either side of a small ward, tethered to machines that never seem silent.

It’s a fairly dispiriting treatment to say the least! Although for many of us it brings initial relief, for some we face a range of daily – often untreated – physical and emotional symptoms that can leave us tired, exhausted, cold, nauseas, itchy, restlessness, anxious or depressed! Although in time, around half of us might be offered a transplant, the other half of us will need to stay on a kidney machine not just for months, but for years into the future.

It’s no wonder that in the face of such utterly overwhelming changes, many of us will really struggle to adjust. We will struggle to regain any level of control. We will struggle to reclaim a Quality of Life, not just over the Christmas months and into the New Year, but in the years to come.

Despite the information, leaflets, education days and occasional peer support we are offered and despite the increasing shift towards equal shared decision making and the remarkable skills of the healthcare professionals we mwwt, it can take years for us to become enthusiastic or confident in looking after ourselves, let alone understand our own unique, personal self-care potential.

In my own case, it took something like 15 years before I understood that I could actively do things that could drive an improvement in my day to day quality of life and 25 years to realise it. After being offered a kidney machine at home, within a short time, I voluntarily increased my dialysis hours by 50% and I never looked back! This started me on a journey of self care that eventually saw me reclaim a remarkable level of health and well-being I couldn’t have imagined that saw my trips to A&E and hospital fall by over 75%!

So what can we do for those of us who will develop Long Term Conditions and who spend 94% or more of our time outside direct medical care, struggling to manage an array of difficult physical and mental symptoms and to reclaim a quality of life?

Well fortunately, there is a light at the end of the tunnel as UK charities and the NHS start to explore ways of solving this problem. Over the last year or so NHS England’s Person Centred Care and Insight Team have put significant funds into a new initiative ‘Realising the Value of Individuals – Transforming Participation in Chronic Kidney Disease’ run by the Renal Registry with significant patient and carer involvement.

The purpose of this two year project is to trial a relatively new measure PAM (Patient Activation Measure) to try and assess the effect of offering a range of innovative approaches to support individuals in their own journey of self care.

We hope that it will demonstrate that there are a range of approaches that can help build greater knowledge, confidence and comfort for those who really struggle with adjusting to and managing kidney failure, be it in Winter, Summer or any season of the year.

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