Alive and well, not just alive

A personal experience of kidney failure care – guest blog by Jonathon Hope

As a patient diagnosed with kidney failure nearly 35 years ago, I believe that whilst the NHS is excellent at keeping people alive, it has a long way to go with the enormous task of keeping people with Long Term Conditions (LTC) healthy and well – and radical changes are needed to meet this challenge.

Part of the problem is that traditionally, treatment options offered for LTCs have primarily focused on offering physical or biochemical solutions. In kidney failure, for example, the primary service currently offered to over 40% of the patient population is regular treatment through a machine1.  Yet, the consequences for me of solely physical solutions has been a near life long struggle to regain a Quality Of Life (QOL) in the face of an overwhelming symptom burden that has impacted every level of my being.

According to one systematic review2 many others experience the same problem: kidney patients, for example, experience symptoms ranging from tiredness and fatigue to pain and sleep disturbance onto anxiety, restless legs and depression. This widespread symptom prevalence is mirrored across almost all chronic diseases3, adversely affecting every aspect of our lives including our ability to work, live well, care for ourselves and to have a meaningful and fulfilling life.

However, the consequence of this physical or biochemical first approached to the management of LTCs is equally devastating for the healthcare system itself.  According to the King’s Fund4, the mental health burden alone of those with LTCs increases their cost of care by at least 45% – or £8bn-£13bn – per year to the NHS.

So what is the first step we need to take to shift the provision of LTC care to a more holistic model? Well the greatest challenge for most of us is that we assume the system knows best.

For twenty years I too believed what I was told – focus on your treatments and biochemistry and all will be well. The result? I dialysed for 50% more than the UK average at home and I could guess my potassium level in my blood to within a decimal place, but my quality of life and inner well-being was non-existent: I still carried the weight of kidney failure around with me into every situation, health care meeting, relationship and job.

Finally in 2000 I experienced nearly six weeks in a coma and awoke paralysed. When finally I got out of hospital and learned to walk again, I just knew I needed to do something different! Over the following years, alongside my medical care, I took up daily meditation, practiced Emotional Freedom Technique (EFT), exercised regularly and reinvigorated my spiritual belief system. The result? A 75% fall in my trips to A&E, admissions to hospital and visits to my GP. Indeed it was so startling to outsiders that one clinician, lost for words, eventually asked: “What happened to you?”

So how can we change this biochemistry first approach across the NHS? The principle way I believe we can change this approach is to systematically ramp up approaches that support patients and clinicians to open their minds to non-biomedical approaches. Self-care and self-management programmes can do this and should be the linchpin for change: every single person diagnosed with a LTC should be offered these courses.

I believe if we give power back to those with LTCs and help them find their own well-being solutions alongside their medical care, then the NHS will be sustainable well into the 22nd century.

  1. UK Renal Registry 17th Annual Figure 2.6. Treatment modality in prevalent RRT patients on 31/12/2013
  2. The prevalence of symptoms in end-stage renal disease: a systematic review. Adv Chronic Kidney Dis. 2007 Jan;14(1):82-99.
  3. Mental Health and Chronic Physical Illness. World Federation for Mental Health. Oct 2010.
  4. Long-term conditions and mental health – The cost of co-morbidities. King Fund. Feb 2012
  5. NHS Five Year Forward View. NHS England. http://www.england.nhs.uk/ourwork/futurenhs/

 

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2 thoughts on “Alive and well, not just alive

  1. As someone with a completely different, rare LTC (and coincidently also a healthcare prof) I can completely relate to this. Thank you! Through the very best intentions of highly skilled and kindly staff, my own pathway in one year involved 51 attendances + a 2-week admission which, when I include travel and waiting time = 53.5 days: 15% of my ‘living year’ and 23% of a ‘working year’. Slowly my pathway is now being improved through the ‘confident humility’ of clinicians who recognise that their drive to ‘fix’ me bio-medically (at any cost to me) nearly resulted in me being entirely broken

  2. Really well put! I don’t want to just live with MS I want to live well with it. Self-management changed my life and without the techniques and tools, without knowledge skills and confidence I would simply exist. Instead I live life and do stuff that is important to me and I’m happy with my life with MS, I feel healthy!

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