Breakout session 4: Living with or beyond cancer
The survivorship agenda is becoming increasingly important as more people live for longer after cancer. There is much more that can be done to support and empower patients throughout their cancer journey. This session considered the specific challenges and opportunities that the Cancer Reform Strategy's focus on survivorship brings for children, young people and adults.
Ciarán Devane, Chief Executive, Macmillan Cancer Support, and Co-Chair, National Cancer Survivorship Initiative
Dr Carole Easton, Chief Executive, CLIC Sargent
Download Ciarán Devane's presentation [Powerpoint, 1.47mb]
Download Carole Easton's presentation [Powerpoint, 862kb]
The consequences of treatment (in particular its impact on life after cancer) are seldom factored into decision-making about treatment. Investment in new treatment technologies could allay some of the late effects of cancer, for example proton therapy. Commissioning for these longer-term returns is problematic, despite the fact that reducing the late effects of cancer treatment is likely to be of economic benefit for health and social care services. We should benchmark performance against that in other comparable nations where there is a perception that these decisions are made more effectively. Patient experience surveys are a key lever for demonstrating the interim impact of improved treatment.
Small changes to the ways in which services are delivered could hugely improve the experience of cancer survivors as services are increasingly focussed on improving life after cancer.
There is a lack of strategic alignment across government and local government on this part of the health agenda and, as a result, local government structures do not exist to support the delivery of the services that survivors might need. Demonstrating the economic case for survivorship services will be an important lever for working across government. There should be a demonstrable saving from better meeting the needs of cancer survivors, for example, up to 60% of hospital bed occupancy for cancer is for unplanned admission. NHS Improvement pilots for the National Cancer Survivorship Initiative are one way in which the downstream impact of providing survivorship services can be evaluated.
A 'key worker' model is one that could be used to better ensure the coordination and delivery of joined up services. The term is used to cover a wide range of services including a named contact, a navigator or a facilitator and it is not always clear which role needs to be performed. It is unclear whether this needs to be a person or a function, the outcome of either of which would be coordination and continuity. The Clinical Nurse Specialist should function as a key worker although few patients are aware of this. The development of key working standards could be considered.
People living with or beyond cancer experience difficulties re-entering services once they have been fully discharged. Understanding the late effects of cancer is important, but it may be difficult to ensure that these effects are managed and dealt with outside of dedicated 'cancer' budgets in the future. Self-referral, self-management and workforce development all have a part to play in addressing this issue.
Breakout session five: Delivering care in the most appropriate setting >