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In the first of two blogs to mark 70 years of NHS Cancer Care, a Public and Patient Voice member of the East of England Cancer Alliance Board, shares his views on the importance of amplifying the ‘unheard’ views of young people and people of black and minority ethnic backgrounds to help the NHS to challenge inequalities in cancer care:
I’ve been involved in cancer research, treatment and care as a patient advocate since the death of our younger son, Tim, 12 years ago.
My purpose, like so many others, is to help make things better and to give more people, especially children and young people, the chance to make their dreams come true.
As a patient advocate, our purpose is to ensure that the voice of people affected by cancer in the East of England is inclusive of all communities and people of every age group and background.
I believe that at our best, we have hospitals and services that look after cancer patients as well as anywhere in the world. However, these high standards are not consistent for all patients and across all areas and communities. The East of England Cancer Alliance considers the reduction and removal of inequalities as a top priority. To achieve this, the leadership of the Alliance is committed to engaging with and involving patients, carers and members of the public in all aspects of further improving care and services.
Currently I’m working with two amazing members of our Patient Advisory Board and cancer survivors, Justine Thompson and Shae Eccleston, to tell the stories of individuals and communities whose voice is seldom heard. I am passionate about ensuring their experiences, views and priorities positively inform service change.
There are many blogs, videos and podcasts of cancer patients telling their story but we’re still not very good at capturing and using patients’ stories when planning services. Now is the time to turn the tide on cancer, so we need to understand its impact on the people of today.
What are the lives of young people, the less-heard, the diverse and the dispersed really like with cancer? How does it impact on their families? What is the impact within black and minority ethnic groups, traveller and gypsy communities and other groups?
If we can understand some of these issues, we can act on them, and figure out how to increase cancer awareness and screening rates among communities who don’t traditionally engage. Tailor cancer support and resources to help those living with and beyond their cancer diagnosis. Bring to life the ambitions of the National Cancer Strategy ‘Achieving World Class Outcomes’, which puts patient experience on a par with clinical excellence.
Storytelling can be an empowering experience. By compassionately sharing these stories and providing a safe space for people to speak about their experiences, we will raise awareness of the barriers to treatment, support and survival. We will also encourage more people to get involved in helping to transform the way cancer services are delivered and improve outcomes and experience for all cancer patients.