In May 2021, the QI Coach Forum hosted a presentation and discussion led by our QI Service User and Carer representatives, Sarah Jayacodi and Janet Seale, along with Grace Levy, Patient and Carer Involvement Officer, and Lucy Palmer, Head of Patient and Carer Involvement.

The presentation by Sandra, Janet and Grace took us through some of the best practices and benefits of involving service users and carers in our QI projects and we thought that the key messages that the Involvement Team delivered are well worth sharing with the wider CNWL QI community.


So what does the data say about how we are doing on SU/C Involvement?  Our aim has always been to achieve 80% of QI projects with meaningful involvement, but currently we have a 40% rate.  In the practicum programme that ended in 2020, we achieved over 90% involvement, so we can do it!

Sandra presented a quote from Dr Con Kelly, Chief Medical Officer that eloquently sums up how we should change our thinking on SU/C involvement to achieve that aim:

“All QI projects must involve service users or carers unless there is a very good reason not to. The project is much more likely to succeed this way. Co-production should be business as usual in the Trust, it should be what we do as a matter of course.”

Dr Con Kelly, Chief Medical Officer

We then went on to consider what service users and carers can actually do to help.  One of the slides sums up very well nine areas in which project teams can work with their service users and carers in a co-production manner.  There are more, but doing several or preferably all of these activities will ensure that your SU/C involvement is meaningful.


Janet then described what genuine (and therefore meaningful) involvement is.  The key words are co-production and co-design, which Janet reminded us constitutes ‘doing with the service users and/or carers’, rather than ‘doing for or doing to’.  This thinking moves our involvement activities away from paternalistic or disempowered involvement to a relationship that is equal and reciprocal with shared power and roles.

Janet identified three major benefits of this shift in behaviours:

  • Strengths and talents of service users are nurtured
  • People become catalysts for change –considered as genuine assets
  • Changes nature of conversation

After reflecting that the ‘doing with..’ can feel at odds with cultural norms, we then looked at how to get the most out of our time working together with service users and carers:



Sandra reflected that when we do involvement in a meaningful way, we open out our understanding of an improvement issue or problem to the views, preferences and experiences of the recipients of our services.  These experiences may be very different to what we, as staff providing a service, might think and this in turn opens up possible changes that are far more likely to succeed.  We love the image of the pathway designed to help people traverse an open space, when clearly those who use the space have worked out their own, more efficient solution.  If ever we have doubt why involvement is vital to our work, this image brings it back into perspective?



To round off the presentation, Grace provided some thoughts on how to make service users and carers feel genuinely involved in our improvement work and some considerations around getting help from the central involvement team and keeping everyone well during the work. 

And not forgetting the excellent co-produced guide that is recommended reading for all QI project teams: Involving Patients and Carers in Quality Improvement Projects: A Practical Guide. 

The guide is available from the QI web pages here.

Help and Advice

If you would like help or advice from the Involvement Team, including help in either finding or training a service user or carer to help support your improvement work, please contact them at

A big thank you to Lucy, Sandra, Janet and Grace for providing a thought evoking and action orientated presentation and talk.

Contact Information

For support or further information on any aspect of improvement work in CNWL, please contact the QI Team in the Improvement Academy at: