Active & Advanced Disease
The active and advanced disease project group has looked at issues faced by cancer survivors with active and advanced disease. This includes issues about keeping well, accessing other support services, re-entering the healthcare system – for example at a time of recurrence and the progression of illness to end of life.
So far we have worked with a wide range of patients, professionals and organizations to run four workshops on:
- What is meant by Active and Advanced Disease
- Patient-centred care
- Support and care in the community setting
- Transitions to End of Life Care
These workshops have helped us develop a vision of what the ideal world would look like:
- Cancer survivors will have personal care plans, based on a structured assessment process, which address ‘coping’ and ‘wellness’ in a patient-centred way, offering patients control, facilitated by professionals
- Rehabilitation and support would be offered through social and emotional care as well as physical care with services clearly signposted
- Survivors and health professions will have access to prompt and sensitive pathways to specialist treatment on recurrence or when encountering problems
- Introduction of palliative specialists early so that End of Life Care decisions can be made in a timely way by patients and professionals together
To work towards this vision, the project is focusing on three key priorities:
- Well-being – living with and beyond cancer, coping, wellness, the ‘new normal’, relationships and access to local support services
- Getting back into the system on recurrence – self-referral, pathways from primary care, treatment by multidisciplinary team (MDT), role of Accident & Emergency departments
- Transition to end of life care (EOLC) - who decides and when, communications
These three priorities are all underpinned by effective assessment and care-planning. We are working with NHS Improvement and the prototype sites to test approaches to assessment and peoples experience of care at different stages along the active and advanced disease care pathway.
The project sponsor is Adam Glaser, NCSI Director and the projects are managed by Noeline Young from Macmillan Cancer Support.
Last updated on January 9, 2012