Policy makers should keep the increasing population with treatable but not curable cancer in mind and ensure there is a clear plan to grow and fund a cancer workforce fit for the future, exhorts Lynda Thomas
The story of cancer is changing. More people than ever are being diagnosed with the disease, and as earlier detection and treatment improves, increasing numbers are surviving longer.
But for those whose life has been extended by these advancements, this does not always mean living well. It’s time we acknowledge their needs and invest in the workforce to support them.
Some of those living longer have a particularly complex experience. New research funded by Macmillan has used cancer registry data to shine a light on some 136,000 people in the UK with more “chronic” forms of cancer, known as treatable but not curable.
Previously “invisible” in the registry data, these are people whose cancer can be managed or treated to prolong their life, but who can very rarely be cured.
More than three quarters (77 per cent) of people with treatable but not curable cancer say they are not getting all the support they need with issues relating to their cancer
Some patients will have this from the moment they are diagnosed, while others will progress to having treatable but not curable cancer if their cancer continues to spread or comes back. What they share are complex needs which, despite the best efforts of hardworking NHS staff, are too often unmet by our current health and social care system.
In fact, more than three quarters (77 per cent) of people with treatable but not curable cancer say they are not getting all the support they need with issues relating to their cancer.
Most will face a prolonged and complicated treatment pathway involving repeated tests, procedures, medications and hospital appointments. Many can find that their physical and emotional health is unpredictable, negatively impacting their ability to go about day-to-day life.
The uncertainty experienced by people with treatable but not curable cancer can be all-consuming. Staff on our support line hear daily of the anxiety of living “scan to scan” and how this permeates every aspect of a person’s life; from their sleep, to their relationships and mental health.
The right support can help people navigate this maze of uncertainty, yet at present, the UK’s health and social care services are not set up to meet the long-term needs of people with cancer in general, and this is a particular problem for those living with chronic cancer.
People in this group are likely to need different or more detailed information on their likely prognosis, what clinical trials are available, and how best to look after their health.
Many may need additional emotional and practical support as they navigate prolonged treatment involving multiple decision points or find that their cancer has affected their ability to carry out basic tasks at home.
Others will need support communicating with the many different healthcare professionals and services involved in their care.
The fact that staff are overstretched is something patients themselves recognise, with one in five people with treatable but not curable cancer saying the healthcare professionals looking after them seemed to have an unmanageable workload
Faced with rising demand, healthcare professionals are trying their best, but with staff spread so thinly, it’s inevitable that not all patients’ needs are being met.
The fact that staff are overstretched is something patients themselves recognise, with one in five people with treatable but not curable cancer saying the healthcare professionals looking after them seemed to have an unmanageable workload.
We know that when there is space for someone to be looked at as a person and not just a patient – for instance through a conversation about what matters to them and a holistic needs assessment – it offers them a lifeline. But we need enough staff with the right skills to deliver this personalised care.
While political parties are busy competing with one another in the run up to the general election, thousands living with treatable but not curable cancer continue to miss out on the support they need.
We need decision makers to keep the increasing cancer population front of mind at this critical time and ensure there is a clear plan to grow and fund a cancer workforce fit for the future.