Cancer can affect every part of a person’s life. Alongside the physical effects of cancer and its treatment, people may experience emotional, psychological, social, practical and spiritual challenges. All of this can also affect those close to them.
The South East London Cancer Alliance have worked with our patients and staff across South East London, to develop two new resources focused on psychosocial support.
The first resource is designed to help staff better understand the psychosocial impact of cancer and what psychosocial support we have in South East London.
The second resource is designed by patients for patients and those close to them. It aims to share what psychosocial support is, how it can help when you’re going through cancer, and provide information and resources about the support available. The resource also provides the opportunity to hear from others affected by cancer.
Patient partner, Dave Griffiths, shares why he became involved in this work and talks about his hopes for the resources, and for those affected by cancer.
When thinking about the term psychosocial support, Dave, who was diagnosed with an aggressive form of bladder cancer in 2019, describes it as the support that helps people adjust when cancer causes life to change very suddenly and unexpectedly.
“Cancer is a real screeching turn in your life,” Dave explained. “Psychosocial support helps people cope with all the things they never knew they would need to know or deal with.”
Recognising that psychosocial needs are not always fully understood—or that people may not know where to find help— Dave hopes that these new resources can make a difference to all those affected by Cancer in South East London.
Bringing personal and professional experience together
Dave brought a unique combination of experience to the project. Before his own experience of cancer, he had worked in psychology, counselling and education, and had studied how people adapt to major changes and transitions in their lives.
“When I was asked to contribute, I was pleased to do it,” Dave said. “I had received such good support from a whole range of sources. I knew what that felt like, and I thought I could give something back.”
Dave helped shape both resources, drawing on his experience as a patient and educator. He wanted staff from different professional backgrounds to have an opportunity to think about what it may feel like to be someone affected by cancer.
The staff resource therefore supports all those who work with people affected by cancer, in any capacity, to develop a shared foundation of knowledge while recognising the different roles that all health and social care staff, psychology services, social prescribing teams, community and charity organisations can play.
Looking beneath the surface
Dave describes the physical effects of cancer as only the “tip of the iceberg”.
“A lot of what is happening is below the surface,” he said. “Cancer can have a huge emotional impact, and trying to keep all of that contained can cause problems of its own.”
Both resources encourage us to think holistically about cancer. This includes recognising concerns relating to emotional wellbeing, psychological wellbeing, our relationships, our work, finances, family life, identity, faith, what means the most to us, as well as the future.
Whilst everyone’s circumstances are different, many people experience similar fears, adjustments and challenges. There are no right or wrong ways to feel when you’re affected by cancer, and support is available whenever you need it, even long after your treatment might have finished.
“You are not on your own”
One of the most important messages Dave wanted the resource for patients and those close to them to communicate, is that support is available.
“The very obvious message is that you’re not on your own,” he said. “There are lots of people with different lives and different circumstances who are affected in similar ways—not exactly the same, but in similar ways.”
The resource was designed by many of our patients, who wanted to give others the opportunity to hear directly from others who understand some of what they may be going through. Our co-design group felt strongly that the resource should feel welcoming, relevant and rooted in the local community.
“We talked about it needing to feel like a home—somewhere that pulls you towards it,” Dave said. “It was important to create something people felt they wanted to visit and where there was something meaningful for them.”
Connecting people with local support
The resource brings information about psychosocial support in South East London together in one place. It aims to help people affected by cancer understand what support may be available, how it can help and where they can go next. This local focus is particularly important to all of our patients who came together to develop the resource.
“People can begin to feel that it is in their area and their locality,” Dave said. “It joins things together so that when you find one part, you can see where else you might go.”
However, creating the resources is only the beginning. The next challenge is making sure that the resources are shared widely and reach as many of our staff and our patients and their loved ones as possible.
Created by patients for patients
For Dave, seeing the finished resources has brought a strong sense of pride and a hope that they will be meaningful for others affected by cancer and those caring for them; “I’m proud that they are out there, because they weren’t there before”.
The resource for patients and those close to them has brought together the knowledge, insights and experience of many of our patients in South East London. “It was a huge team effort and we created something that other people can see and use.” Dave said. He hopes that people affected by cancer will use the resource to find information about the support that would be right for them.
Dave also hopes staff will use the educational resource to reflect on the whole-person impact of cancer, and to help find the right support for those they are caring for.
You can explore our psychosocial educational resource for staff here.
You can explore our resource for those affected by cancer in South East London here.
Please help us reach more people by sharing this article and our resources through your teams, services and local communities.
You can also get in touch and we can send you printed copies of our promotional materials for our resource for those affected by cancer – please email us on: gstt.selca@nhs.net