Guidance and resources for systems and primary care providers to manage cancer as a long term condition for people affected by cancer.

A person recently diagnosed with cancer will present at primary and acute care with increased physical and psycho-social needs. They may also experience the effects of treatment years after having it. For many people cancer will become a long-term condition that needs managing, and increasingly as part of multi-morbidity management.

Cancer as a long term condition – the case for change

In 2015, the Transforming Cancer Services Team has developed a case for change to manage cancer as a long term condition, including a pathway of care. It was endorsed by the London Cancer Clinical Leads Advisory Group, London Cancer Commissioning Board and the Londonwide Local Medical Committee at the time.

There is a strong case for change in managing cancer as a long-term condition:

• One in two people born after 1960 will get cancer sometime in their lifetime.
• There were 231,740 people living with and beyond cancer in London in 2017.
• It is expected there will be in 353,400 people living with and beyond cancer in London by 2030.
• While more people are living longer following a diagnosis, they are not necessarily living in good health.
• 70% of people with cancer are estimated to have at least one other long-term condition.
• 15 months after a cancer diagnosis, cancer patients are more likely to use emergency care and be admitted into hospital than other patients.
• The National Cancer Experience Survey shows that London falls considerably short of the best in England (and lag behind England’s average) on questions relating to the support patients received from their primary care team during treatment and the support from health and care after treatment.

In 2019, TCST also conducted England wide analysis showing that there were 110,000 patients missing from primary care practice registers (funded through QOF) as compared to the National Cancer Registry. In London, this figure was 18,000 people. Without accurate cancer registers, it is challenging to manage all cancer patients appropriately for their risk of future cancers, consequences of treatment and shielding lists (such as for COVID-19).

Guidance and resources include:

• London’s cancer as a long term condition model  (2015)
• Template business case (2017)
• Commissioning and delivery toolkit for cancer as a long term condition (2018)
• Guidance on clinical coding of cancer patients in primary care (2019)
• Holistic Cancer Care Review mapping (2021)
• Template patient letters
• Primary Care Cancer Education Toolkit
• South West London CCG’s Primary Care Nursing and Cancer programme

TCST actively supported this Macmillan funded programme between 2018-2020. These resources have formulated a pan London programme, now being delivered by TCST and funded by London’s cancer alliances.