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Evolving patient, carer and public involvement in cancer care

A new approach to improving the quality of care and health outcomes was set out in the 2019 NHS Long-Term Plan. It emphasised the need to build on existing engagement with local communities to ensure their meaningful input into local plans. We supported Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer Alliance to evolve and increase patient and public involvement to ensure meaningful input into local plans.


Challenge

A new approach to improving the quality of care and health outcomes was set out in the 2019 NHS Long-Term Plan. It emphasised the need to build on existing engagement with local communities to ensure their meaningful input into local plans. Fundamental to this was engaging and involving representatives from the most marginalised communities who often experience the poorest health and greatest inequalities. 

The challenge for SWAG Cancer Alliance was to ensure it gave priority and importance to patient/carer involvement in its work at Board level and throughout its workstreams. In January 2021, SCW began working with SWAG to review its current approach and identify improvement strategies.

Approach

Working collaboratively with the SWAG team, patient representatives and Macmillan Cancer Support we provided programme management and cancer subject matter expertise. We reviewed new approaches to evolve and increase patient and public involvement (PPI).

Together we redesigned the Alliance’s PPI role to a more senior level (band 8a) including cancer inequalities as part of the role. We developed a successful business case for Macmillan funding for this post and oversaw the recruitment process. We ensured patient representation on the interview panel for this public-facing role.

Co-design was an important part of the process and we worked with patient representatives to co-develop the role descriptors for the Patient/Carer representatives who joined the Board, and for those who participated in the SWAG Rapid Diagnostic Service, Personalised Care & Support and Population Health & Inequalities Groups

We developed an interim PPI strategy and plan incorporating input from both the SWAG management team and patient representatives. Patient representatives also contributed to the development of the PPI page on the SWAG website.

Outcome

The Cancer Alliance now has a greater focus on PPI with the appointment of a dedicated senior PPI & Inequalities Lead. They are actively developing the work to take forward the Interim Patient & Public Involvement strategy and plan. 

Greater involvement of patient representatives has now been achieved with their membership and participation in the SWAG Cancer Alliance Board, Rapid Diagnostic Service, Population Health & Inequalities Group and the Personalised Care & Support Groups. Patient/carers now also represent SWAG Cancer Alliance on the National Patient Public Voice Partner Forum

These developments ensure a strong patient voice across the entire SWAG work programme that will enable much greater co-creation for future developments. 

Patient involvement within SWAG has increased hugely and gained momentum. Patients are now embedded in several different SWAG workstreams. There is good progress towards the patient voice becoming the norm and a better understanding of what benefits that can bring including the patient voice being seen as equal to any other in the room. Where SWAG had been lagging behind other Alliances in patient involvement, huge steps forward have been taken. Although there is a lot more work to be done, with the strong foundations now in place with our strategy and a dedicated PPI lead, I'm confident patient involvement and improved representation of inequalities will continue to strengthen. Thank you SCW so much for your work in making it all happen. SWAG Patient Representative

SCW’s support and guidance has been invaluable in driving the Patient Public Engagement agenda forward within SWAG Cancer Alliance.  We now have a robust plan for PPI strategy and are really driving forward the Inequalities workstream. 

SCW was pivotal in driving through the appointment of a Patient Public Engagement and Inequalities Lead and secured funding from Macmillan Cancer Support. Their work in developing patient representative roles has ensured that the patient voice is considered and represented across all workstreams within SWAG CA. Programme Manager, SWAG Cancer Alliance

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