Posted on: 14 February 2025
- People who use services have insights that NHS Trusts cannot afford to ignore and that’s why at CNWL we use the term ‘Experts by Experience’.
Since 2019, CNWL’s involvement strategy has led to a huge increase of patients and carers getting involved in shaping services, and there is plenty to be proud of and reflect on.
Our 2024 survey found that 86% of staff and experts by experience see real improvements because of their input, while 88% say it has had a positive personal impact. Whether that’s a staff member feeling more connected to their role, or an expert by experience whose involvement has enhanced their wellbeing or recovery, we know that when done well, the impact can be profound.
But for involvement to be meaningful, it must start early, be well-supported and lead to action. As one of our carer Experts by Experience says, “Involvement should always be meaningful, and we should never settle for less.” Strong relationships are key—patients, carers, and staff all have valuable perspectives, and they should be equally heard.
This week, we launched our new Patient and Carer Involvement Strategy that will run until 2030. Over the next five years we will try out different ways to help ensure early, more in-depth involvement. We will measure what difference this is making and keep learning. We aim to move towards more co-production, a word often used in the NHS but less often achieved in practice.
Launching the strategy, Helen Willetts, Chief Nurse said:
"After 40 years as a nurse, I’ve learned a lot and one big lesson is the power balance in the NHS. We need to shift the balance, and make sure those use our services, along with carers and experts by experience, have an equal voice. We’ve already started pieces of work that will be carried through in the new strategy, making it a living document that holds us accountable. We’re committed to championing this change”.
Our greatest strength is our talented and committed network of Experts by Experience, as well as the many CNWL staff and teams who have shown how passionate they are about working in this way. We’re grateful for their passion and invite more people to join us.
Janet Seale, Carer Governor, said:
“Involvement benefits everyone—carers, service users, and staff. Experts by experience and peer support workers bring so much to the table. Our lived experience gives us a different perspective because we’re on the receiving end of care. That insight is valuable and we just ask that it’s recognised and put to good use."
