Powerful Patient Stories

Last week on World Kidney Day, the London Acute Kidney Injury Network was launched at the Welcome Foundation. Michael Wise told the audience about his experiences and feelings during a severe episode of AKI that followed on from a toxic shock type illness. AKI stage 3, requiring renal replacement therapy (RRT) is not a rare condition; it affects about 1% of hospitalized patients and has a mortality approaching 30%. Michael’s kidney function did not recover, he went on to develop end stage kidney disease and he has been on RRT since he was admitted to University College Hospital London in extremis at the beginning of the illness a few years ago. From Michaels account, it seems that the clinical staffs were expecting recovery of kidney function although Michael himself was not surprised when told that the kidney biopsy performed 6 months after the acute illness showed irreversible fibrosis. At that time, Michael was only passing at most a few hundred mls of urine a day.  He knew his own body. From there the story Michael tells is really a typical dialysis story. Even the way Michael started dialysis is not that unusual. Over the last decade or so starting dialysis in an unplanned fashion or as an  emergency  has fallen from over 30% to under 20 % ; in some  places were the links between primary and secondary care are strong , where kidney disease management programmes are in place or  where care is better integrated and coordinated  by GP practices , Kidney Care teams and Biochemistry laboratories being  connected by IT commencing dialysis in an unplanned way has fallen to between 5 to 7% . Back to Michael – he went onto satellite haemodialysis; he found it very difficult to maintain his work, had problems with sexual dysfunction and was still experiencing some of the sensory loss and distortions from his time on the intensive care unit. Coronary artery stenting was needed prior to transplant listing and disappointingly, immediate family members were blood group or tissue type unsuitable as live related donors. Michael’s, wife’s niece came forward, was suitable and gave Michael the gift of life by donating one of her kidneys. Michael’s new kidney   worked extremely well from the outset. Following recovery from the operation, Michael himself feels his overall functioning has now increased to about 75% of the level it was before he became unwell.   Last year there were 1,061 live donor kidney transplants, more live donors than deceased donors, despite the fact that year we saw the highest ever number of deceased organ donors in the UK – 959, a 7% increase compared to the previous 12 months; so Michaels narrative was a very fitting story for World Kidney Day 2012’s theme of kidney  transplantation. 

Michael’s clinical history follows a frequently seen twenty first century pattern. That in itself is remarkable because the advances in intensive care, in dialysis and transplantation over the last 20 years have been considerable. However, it is the human story that is extraordinary. The selfless kidney donation has enabled Michael to really regain life. Listening to Michael tell his story , his emotions and his  experiences  seen from the patients perspective is compelling , extraordinary and humbling in equal measure . Michael is a great speaker; he relays the impact of events in a wonderfully rich way. You to can listen to his story at the patient’s section of the brilliant London Acute Kidney Injury (L AKIN) website.  Whether you are a health care professional, health service manager, carer, patient or interested member of the public you will be moved by this story. Michael’s insight and fluency provides an opportunity for all of us to understand the importance of patient experience. Thank you Michael.  

Patient experience: moving centre stage

For everyone who uses the health system experience of care is an important outcome, for some the phrase “the experience is the outcome” is literally true. Patient experience is one of the five overarching domains of the NHS Outcomes Framework that sets the big picture agenda for health.

A working definition of patient experience to guide its measurement across the NHS has recently been agreed by the NHS National Quality Board:

Respect for patient-centred values, preferences, and expressed needs, including: cultural issues; the dignity, privacy and independence of patients and service users; an awareness of quality-of-life issues; and shared decision making;

Coordination and integration of care across the health and social care system;

Information, communication, and education on clinical status, progress, prognosis, and processes of care in order to facilitate autonomy, self-care and health promotion;

Physical comfort including pain management, help with activities of daily living, and clean and comfortable surroundings;

Emotional support and alleviation of fear and anxiety about such issues as clinical status, prognosis, and the impact of illness on patients, their families and their finances;

Welcoming the involvement of family and friends, on whom patients and service users rely, in decision-making and demonstrating awareness and accommodation of their needs as care-givers;

Transition and continuity as regards information that will help patients care for themselves away from a clinical setting, and coordination, planning, and support to ease transitions;

Access to care with attention for example, to time spent waiting for admission or time between admission and placement in a room in an in-patient setting, and waiting time for an appointment or visit in the out-patient, primary care or social care setting.

The National Institute for Health and Clinical Excellence have also just produced a clinical guideline (NICE clinical guideline 138) on improving the experience of care for people using adult NHS services. For anyone who has been watching the debate about the risks and benefits of breast cancer screening, is involved in explaining risk or has had their own risks explained to them, the sections on shared decision making and principles to be used when discussing risk, such as using natural frequency (for example 10 in 100) rather than percentage (10%) and importance of using absolute as opposed to relative risk (for example the risk of an event increases from 1 in 1000 to 2 in 1000, rather than “the risk of the event doubles”) will be of great interest.

The NHS Institute for Innovation and Improvement launched a complete guide to improving patient experience; “Transforming patient experience, the essential guide” containing a range of examples, research evidence and tools for developing the evidence based for measuring and improving patient experience. This guide covers patients being involved the design of services which is a right under the NHS constitution, as well how patients and carers, healthcare professionals and managers can start to transform how people using the service and those providing the service work together to achieve better outcomes.