Kidney Patient and Carer Involvement Experiences

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Kidney Patient and Carer Involvement Experiences

Introduction

This page and supporting pages and links, outline some of the involvement experienced by patients or carers within kidney service development programmes e.g. Quality Improvement and/or Research.

 

The background for these will be based around the Kidney Services: Improving at Scale report which shares the experiences of those involved in four scaled up quality improvement programmes. It provides information for those planning to take a locally developed and proven intervention to the next step of spreading to other locations by specifically considering five themes.

This was supported by a Kidney Quality Improvement Network (KQuIP) Webinar which can be accessed here.

 

This has been followed by three 1 hour KPIN Webinars titled “Stepping into your shoes: working together to improve kidney services”

Topics included:

  1. Working together to understand what matters to patients and their families (conducted on 27 October 2020) 
  2. Working together to sustain meaningful patient involvement in developing your kidney service or project (conducted on 10 November 2020) 
  3. Working together to measure the difference that meaningful Patient and Public Involvement (PPI) has made to your kidney service or project – Currently being run on the 15th of December (see this link)

 

The first webinar looked at “Working together to understand what matters to patients and their families”

Outline:  In light of COVID-19 many patients could not rely on their usual forms of communication with their renal unit, and many changes were made to kidney services without asking patients or their families.  This seminar focuses on how patients and health care professionals can work together to set up and sustain a successful diverse Patient and Public Involvement (PPI) group, that supports health care professionals to hear what matters to patients and their families

Subjects covered included:

  • Advertising and recruiting a diverse group
  • Role description
  • Payment
  • KPIN resources

(see video via this link) – [to be added]

 

The second webinar looked at “Working together to sustain meaningful patient involvement in developing your kidney service or project“.

Outline:  It is important that patients or carers undertaking PPI activities feel valued and that their voice is heard.  This seminar focuses on how to sustain meaningful patient involvement in kidney services, quality improvement or research

Subjects covered include:

  • Development and training needs
  • Feedback
  • Practicalities (e.g. meeting times, accessibility if meeting face-to-face)
  • Communication (methods, use of jargon)
  • KPIN resources

(see video via this link)) – [to be added]

 

The third and final webinar in this series looks at “Working together to measure the difference that meaningful PPI has made to your kidney service or project

This webinar is due to be conducted on the 15th of December; why not enroll?  For further details click here.

Outline:  It is important to think about how involvement of patients and carers has made a difference to your service or project. This seminar will focus on how to measure the impact of PPI in kidney services, quality improvement or research

Topics covered will include:

  • Different opportunities for involving patients and carers
  • Different ways to measure impact

Patient and carers wanted; KPIN needs you!

  • Do you have experience (Good and Bad) of ‘Patient Involvement’ as a patient or as a carer (or family member?)?
  • Can you spare a little time (in this case about 1.5 hours)?
  • Do you want to help influence ‘how’ patients get involved?
  • Do you want to turn your patient experience into patient expertise?

As kidney patients and carers, collectively we have a considerable amount of ‘patient involvement’ experience, at various levels.

For more information click here

Coming soon!

To support the above elements of Patient and Carer Involvement, we are trying to provide some personal examples of other patient/carer experiences across a variety of kidney patient involvement activities.

Andy Henwood Co-chairAndy Henwood

Andy is a York patient and has been an involved patient on and off for a considerable number of years.  Andy outlines his experiences as a hospital patient representative, a patient lead on two Shared Care programmes, his role in the development of KPIN and more recently as a patient lead for a Kidney Patient Peer Support Network at York.

 

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