Patients in their 20s, 30s and 40s have unique needs
11 March 2014
In a powerful reflection about her own experiences, our trustee Ceinwen Giles, a founding trustee of the charity Shine Cancer Support, writes about the specific needs of young adults with cancer. Her blog shows clearly why patients need to be involved in the design, delivery, and improvement of services.
Four years ago I was diagnosed with non-Hodgkin’s lymphoma (stage IVB). I was 35 years old and had given birth to a baby girl six weeks previously. Although I was a new mother, I had to immediately start a period of intensive treatment, which would require a six month hospital stay.
I was distraught. Who was going to take care of my baby? My husband had to work. My extended family were in Canada. One nurse suggested we put our baby in foster care, which only made me more upset.
The lack of appropriate support for me as a young adult inspired me to become a founding Trustee of Shine Cancer Support, the only charity in the UK which focusses exclusively on supporting people in the 20s, 30s and 40s with cancer. The need to support NHS staff in their communication with all patients, but particularly this group of young adults, inspired me to accept a trusteeship at The Point of Care Foundation.
Patients in their 20s, 30s and 40s have unique needs. This is borne out not just through my own experience, but also through research I’ve conducted in north America, thanks to a fellowship from the Winston Churchill Memorial Trust, and a survey of young adults with cancer conducted by Shine in 2012.
Younger adults frequently feel alone and isolated following a cancer diagnosis, and managing relationships can be tricky. Many say they find it hard to know who to tell about their health status, especially when starting a new relationship with a potential partner. Sexual relationships can be affected by reduced confidence, for example, after breast cancer. And managing relationships with current or potential employers, especially following a long period of absence, isn’t easy but is especially important for this age group as they often have many years of employment ahead of them.
Fertility is another issue that disproportionately affects cancer patients in this age group. Reduced fertility or even sterility as the result of treatment can be traumatising for those who dreamed of having a family one day. But it’s not something healthcare professionals always deal with very well. Nearly half (47%) of those who responded to Shine’s survey felt they had not been adequately supported to preserve their fertility (eg. By banking sperm or retrieving eggs), something that was echoed in conversations I had with many charities in the US and Canada. This issue, perhaps more than many, highlights the need for healthcare providers to understand their patients’ needs and priorities. Surviving cancer only to find that other parts of their lives have fallen apart can mean that finding a sense of normality after treatment is very, very difficult.
It’s worth considering whether the issues affecting young adults with cancer also affect other young people with life threatening and long term conditions.
Twenty to forty-somethings – but particularly the younger ‘millennials’ – are unique in the way that they communicate and interact with health and support providers. Used to communicating quickly via social media, they are less likely to stick to rigid routines and schedules. They are also more likely to seek out information and support online, especially as platforms such as Facebook and Twitter allow them to connect directly with others who have similar experiences.
There is clearly a great deal that health services can do to become more sensitive to the needs of young people with cancer. A first step is recognising that young adults – distinct from children and teenagers – have unique needs which require support. Appropriate counselling and better information and support around fertility is also important. But it’s just as important that the patients themselves are involved in decisions about their care and deciding what a good outcome for them would look like; it may not be the same as the outcome their medical team envisages. Without this understanding, it will be impossible for health services, partner organisations and charities to work together to bring about change.