The Northern Trust (NHSCT) holds Health and Well Being events for people living with cancer, each for specific cancer types. After attending an event in 2022, feedback from a Service User (SU) stated that the information wasn’t applicable to people living with advanced cancer. The SU stated, “It felt like closure for ‘them’ – nothing is closing for me”. This feedback was passed to the Palliative Care Service Improvement Team. The team scoped caseloads of NHSCT CNS teams to identify need – one team alone had 117 people living with advanced cancer on their caseload. Scoping across Trust, regional services and literature identified nothing locally and limited national resources. A working group of Service Users (SUs) and professionals was formed with the aim of producing a resource to address holistic needs of people living with advanced cancer in NHSCT.
The National Cancer Strategy states all cancer patients should have targeted information addressing holistic needs. The working group wanted to provide a resource that was relevant to SUs, safe to use and available in a timely way. The SUs led the work to highlight relevant topics, design the toolkit and the oversee the language used. The professionals involved ensure evidence based content/information. The group worked closely with IT/Corporate Communication teams to ensure resource was in accessible formats.
A SU focus group was established to co-design the resource. This was formed through connections from the original SU who identified the need, Macmillan forums and CNS caseloads. The SUs identified topics to focus on and guided professional input. A hybrid model was used for meetings to accommodate SU needs. SUs created title, location of resource, wording, topics and quality assured professional presentations.
The focus of the Toolkit was practical advice on ‘living well’. SUs highlighted appropriate topics. Identified professionals created presentations on these, delivered initially to SU focus group for feedback. Using SU feedback content was adapted and then recorded via Teams. Professionals, where possible, used the term ‘serious illness’ to allow transference to wider palliative audience.
The SU asked professionals to ensure videos were given a clear introduction ‘label’, and information applicable to later stages of illness was kept to a separate video. This ensured that people could access information safely – when appropriate and ready for the information eg there are two dietetic videos – one on eating to stay well, and one on when there are challenges with eating and drinking.
Flyers were designed and a launch event held to promote the resource – the SU who identified the need initially was the key speaker, and took local press opportunities to further promote the work.
As one of our SU stated “Patients see things that staff don’t. We understand how we like to be spoken to and we are the experts of our own condition.”. This resource has credibility because it was co-designed by people with lived experience. It gives staff confidence to recommend and share the resource. It also highlights to staff, who can have concerns around sensitive topics with palliative patients, that SUs want to talk about these topics.
Many of the topics are not widely addressed for this group. Professionals developed knowledge through the experience eg the counsellor found limited information on Body Image and Sexuality for people with advanced cancer. She felt her video was enriched and changed through SU feedback. It also has led to her considering the need for wider professional training in this topic. The videos are also now being used in training of staff.
Both SU and professionals adapted through the process – for SUs, acceptance of the term palliative was particularly challenging – discussions resulted in them defining this on the resource to ensure public understanding.
This is an ongoing project as new topics and resources are identified. The SU voices have been key to the development of the resource and are what gives it credibility and value. The toolkit has been recognised regionally and there are now talks to make this a regional resource – ensuring the SU voice will be essential.
