The renal community – putting the personalised care agenda into practice

In the document, Universal Personalised Care: Implementing the Comprehensive Model, released in January of this year, NHS England set out how it plans to deliver personalised care across the NHS over the next ten years.  As the document states:

“As well as being morally the right thing to do, a growing body of evidence shows that better outcomes and experiences, as well as reduced health inequalities, are possible when people have the opportunity to actively shape their care and support.”

Universal Personalised Care: Implementing the Comprehensive Model,

This plan, co-produced with people with lived experience, brings together six evidence-based and interlinked components that are needed to realise the full benefits of personalised care – 1. Shared decision making 2. Personalised care and support planning 3. Enabling choice 4. Social prescribing and community-based support 5. Supported self-management 6. Personal health budgets. 

In the light of this report, the Renal Association’s quality improvement team have been reflecting on the work being done across the kidney community within these areas, and just how far the community has come in the last few years towards personalised care.  Whilst there is some way to go, we wanted to highlight some of the things our community has achieved.

  • Transforming Participation in Chronic Kidney Disease – we have tested the feasibility of collecting a patient’s knowledge, skills and confidence in self-management in order to tailor support and develop a more equal partnership between the healthcare professional and person living with kidney disease – read the full report here
  • Transforming Participation 2 – nearly 40 members of the multi-professional team across four renal units have been given initial training in health coaching techniques in order to support people living with kidney disease to build their knowledge, skills and confidence to self manage

“We need to understand where the patient’s head is at in relation to their renal failure, what their emotions are, what their beliefs are and what they understand…partnership working is essential…”

Nurse feedback on health coaching training
  • An interventions toolkit has been co-produced by people with lived experience of chronic kidney disease and clinicians, offering a further suite of interventions that can be implemented to support people to build their knowledge, skills and confidence
  • A validated kidney disease specific measure of patient experience (the Kidney PREM) has been co-produced by people with lived experience of kidney disease, clinicians and academics, in order to understand and improve how people experience their kidney care, and to ensure people with lived experience are at the heart of service improvements – read the 2018 Kidney PREM report here
  • The Kidney PREM has been adopted as a key element of service review by the NHS Improvement’s Getting it Right First Time process.

As a sector, supporting people with long term conditions to be involved as partners in their own care has been a central focus of our improvement work, although there is still work to be done.  The 2018 Kidney PREM highlights that people don’t always feel a part of decisions that are made about their care.  This was the lowest scoring theme of patient experience from the Kidney PREM in 2017 and 2018 as measured by the following three questions:

Does the renal team:

  • Talk with you about your treatment and life goals?
  • Enable you to participate in decisions about your kidney care as much as you want?
  • Talk to you about taking a more active role in managing your own kidney care?

How we respond to this data, and continue to develop and build on the great work that has already been done as a national community as well as locally at renal unit level, will prove the move from measuring, to improvement.