By 2045, the number of people living with cancer in the UK will increase by 58%.
When we heard this at the national Macmillan Professionals Conference in April, it stopped us in our tracks. Currently there are 3.5 million people living with cancer (https://www.macmillan.org.uk/about-us/latest-news/news-and-stories/change-is-needed-3-5-million) and Macmillan recognises that there is more to do to improve the experiences of everyone who is affected by cancer. To consider that this number will exceed 5 million in less than two decades strengthens the resolve to encourage reflection on what will make a difference day-to-day.
Our focus, working in partnership with Macmillan Cancer Support, has been learning about and responding to health inequalities. Speaking to hundreds of people about cancer across Essex from diverse communities from the point of screening, through to diagnosis, treatment and aftercare has only highlighted how these clinical terms and the stages associated with managing a condition, do not adequately describe the experiences of the person living with cancer. We need to prioritise the person and remember that living with cancer has economic, social, cultural, and environmental consequences.
For example:
Economic – when you live at a distance from your treatment centre and rely on public transport, what are the implications? We have been told of people spending as much as £74 to get to one therapy appointment. The financial costs and the effort to co-ordinate this are significant. Therefore, linking to relevant support services (https://www.macmillan.org.uk/cancer-information-and-support/get-help/financial-and-work/money-faqs) is vital.
Social – who can you turn to as support when your life is changing after a diagnosis? Finding out about accessible community groups is key. We have identified more than 60 voluntary and community organisations that specialise in cancer support in Essex and there are many, many more that work with patients and their families in diverse communities in different ways. Many are recorded on the Cancer Care Map (https://www.cancercaremap.org/) but we are regularly discovering grassroots groups stepping into this sphere need to amplify their impact. We are working with organisations to promote what they do and seek additional resources to help more people.
Cultural – if you have additional communication needs, how do you stay informed and access opportunities to inform your care givers of what you need? Communication has been the most consistent and recurrent theme in our conversations across the county. Whether that be the challenges in co-ordinating BSL interpretation with appropriate medical knowledge to join an appointment, or assumptions being made about your levels of understanding, whereby you feel you cannot voice what you need, there is space to learn more from diverse communities and make space to listen first. (https://www.macmillan.org.uk/cancer-information-and-support/get-help/translations-and-other-formats)
Environmental – every person has a history, relationships and life experiences that may inform their journey on a cancer pathway. For instance, people have shared how past trauma may impact upon their access to treatment. Being disconnected from potential networks of support can increase isolation. Opening up conversations about what people value and benefit from when living with cancer encourages more personalised care that can help people to cope with the challenges they face – valuing their voice and responding to their own circumstances and priorities more directly.
Our work on the Macmillan Community Voices programme continues over the coming months. We are keen to hear more from people who would like to share their experiences, to speak to voluntary organisations who may need help to promote their work or find ways to support it in the future, and to share the findings of our work to inform best practice in cancer care locally.
To learn more, please reach out by contacting voices@community360.org.uk or call us on 01206 505250 to join these conversations.
