West Yorkshire and Harrogate Cancer Alliance Community Panel makes sure patients' voices are heard

West Yorkshire and Harrogate Cancer Alliance is one of 21 Cancer Alliances around the country, set up by NHS England. It acts as system leader for all NHS cancer services across the area, supporting service transformation and improvement. The community/patient panel is just one of the ways in which the Cancer Alliance works with those affected by cancer across West Yorkshire and Harrogate, to ensure their experiences and views influence the priorities, work and decision-making of the Alliance.

Through a grant-funded partnership with Healthwatch Wakefield, the panel brings together an enthusiastic and committed group of patients – currently around 50 - who are passionate about ensuring the voices of people affected by cancer are shaping cancer care and services. Covid 19 has brought a huge range of challenges over the past 18 months. To ensure the work of the panel has continued to be effective, and for the members – many of which continue to be clinically vulnerable and isolated – to feel supported, ways of working have been adapted and constantly reviewed. In response to national restrictions, the panel switched from meeting face to face to virtually, via Zoom. This has enabled panel members to continue to work in partnership and co-production with colleagues across all Cancer Alliance workstreams, making tangible differences, based on what matters most to patients. These include building patient confidence and overcoming barriers to accessing health services during Covid 19. Patient panel members participated in a series of discussions, where they shared their personal experiences to help overcome barriers to accessing cancer health services during Covid 19.

At a time when many cancer, or suspected cancer, patients were fearful of attending hospital for diagnosis or treatment, this patient intelligence was presented to the Cancer Alliance Board and fed back into local health systems to influence strategic and operational planning. Working in partnership with Calderdale and Huddersfield NHS Foundation Trust and the Cancer Alliance Optimal Cancer Pathways programme, the patient panel helped to develop a new “head and neck” online web resource to support patients with this cancer type. The web resource can be found here. This took place over several sessions, where our patients engaged with health professionals to ensure co-production of design and content. The website is now live and being used as a helpful point of reference to support local patients with these types of cancer.

Supporting innovation – The PinPoint Test. The Cancer Alliance has joined forces with innovators and clinicians to support the introduction of new technology and new ways of working to support delivery of cancer services during the pandemic and beyond. There is a particular focus on improving early diagnosis through risk assessment and new diagnostic techniques, such as the PinPoint Test. The PinPoint test uses artificial intelligence to produce a calibrated probability that a patient has cancer. Panel members worked with the Innovations Programme to look at how the process for Pinpoint blood testing could be administered on a practical basis within the community. In addition some patients from the panel took part in trial testing through Healthwatch Leeds. Developing new models of care in the community for cancer patients post treatment.

More recently, panel members have worked with the Cancer Alliance and partner Macmillan to determine how best to shape the priorities and delivery of two new Macmillan funded community personalised care lead posts. More specifically, patients were able to identify the type of support needed when a cancer patient is discharged from hospital to home. The funding bid was successful and panel members were thanked for their involvement. Panel members are also involved in the recruitment process as members of a stakeholder panel, informing the decision on candidates to appoint. They will also have a role to play in evaluating the impact of the new posts as their work progresses. Supporting the design and delivery of three new local Cancer Screening campaigns. The panel recently worked with the Cancer Alliance Healthy Communities programme and campaign agency Magpie to develop three new cancer screening awareness campaigns for breast, bowel and cervical cancers.

As part of the development process, panel members came up with a variety of ideas for the design specification, identifying the important message to get across and how the campaigns could be delivered to make the biggest impact in getting people to come forward for screening. Panel members commented on the drafts and suggested further revisions to ensure impact. The campaigns are launching during August/September. The above are just some examples of the many cancer projects the community panel has helped to support over the past year. “Creating a patient panel dedicated to supporting our work, but with the independence provided through the partnership with Healthwatch Wakefield has increased our confidence that we are implementing the national cancer strategy in a way that takes account of what matters to our local population”, says Cancer Alliance Clinical Lead Professor Sean Duffy. “During the course of the pandemic, outputs from our panel on developing COVID safe services and supporting restoration of services have been used by other programmes within our health and care system, for example planned care, as well as across other Cancer Alliances. Our local Planned Care Recovery Programme is now replicating the approach and we have had several enquiries from around the country interested in following suit.”

In summary, when new members join the panel, they invariably say they want to make a difference, they don’t want to join a ‘talking shop’. The changes don’t need to be huge, but it’s the small changes that make a huge difference to the lives of others. This committed and passionate panel of volunteers work tirelessly to raise awareness and support service improvements. As one panel member commented: “As one person, I cannot change the world, but I can change the world of one person”.

Watch this video to learn more about this important work.