Patients shaping services: Patient and public voices forum

The Patient and Public Voices (PPV) Forum brings important views and perspectives into the work of the NHS Cancer Programme. Membership is from people across the country who have all been affected by cancer and are working with their local Cancer Alliance.

The Forum meets every six months (currently virtually) and held its latest Forum in March.

In addition to interactive sessions with Prof Peter Johnson and David Fitzgerald covering a range of priority areas, the session also saw dedicated workshops on inequalities and on patients living with multiple conditions.

Two members of the PPV Forum have joined each of two task and finish groups set up to look at the effects of the pandemic on psychosocial support for people affected by cancer and at treatment disruptions. During the course of the task and finish groups’ work, those PPV representatives are engaging with the whole PPV Forum to bring the perspectives of their communities and networks. The recommendations from both these groups will go to the National Cancer Board later in 2021.

Four PPV Forum members have been appointed to a new PPV Forum Sub Group on Health Inequalities. Members will provide insight, feedback and advice on health inequalities in cancer outcomes and cancer care.

The first six months of 2021 has seen an increase in engagement with the PPV Forum across the Programme. The pandemic and the shift to video calls across all aspects of our lives has created easier and more effective ways to reach out collectively to people affected by cancer. Four members joined our monthly virtual cancer staff meeting to share ‘what good involvement looks like’. This was followed in June by a team online lunch and learn session with another PPV Forum member who talked about his involvement and experiences of working with groups that are seldom heard and creating authentic opportunities for involving patients and using their experiences to improve quality.

We were delighted to welcome another member to be keynote speaker at the Cancer Alliances Experience and Engagement Leads Network, Share and Learn event. The focus of the presentation was the impact of covid-19 on the deaf community.

“With the roll out of the COVID vaccine we are all hopeful that the acute phase of the pandemic is slowing. However, it is clear that the impact of the pandemic will be felt for a long time to come. The members of the PPV Forum look forward to working with the National Cancer Team to ensure that the diagnosis, treatment and support of cancer patients remains a priority.

During the pandemic our members have continued to be actively involved in a wide range of activities.

As Chair of the PPV it’s hugely important to me that the Cancer Programme hears from patients about what is important to them, and also that patients and those affected by cancer are able to influence the direction of initiatives within the Cancer Programme.”

Ceinwen Giles, Patient and Director of Partnerships and Evaluation at the Shine Cancer Charity is the Chair of the NHS Cancer Programme’s PPV Forum.

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