More people than ever are living with and beyond cancer. There are currently around 3 million people in the UK living with cancer – an increase of 39% in the past 20 years. This s set to increase by a further 25% to four million by 2030 (Macmillan, 2022).
The good news is that cancer survival rates are increasing as a result of greater awareness, earlier interventions and the advent of new, more effective treatments. However, research suggests that many people are not being supported well in the time after having their cancer treatment. Receiving care that is tailored to a person’s specific needs can have a significant impact on their experience and quality of life.
People living with cancer can have complex and very varied health and social needs, many of which are currently not being met and may not appear until years after a cancer diagnosis. One in four people who have been treated for cancer live with chronic ill health or disability as a consequence of cancer and their treatment, for example lymphoedema, psychological and emotional distress, bladder and bowel dysfunction, heart disease, diabetes, osteoporosis, infertility and many others (Macmillan, 2013).
Patients tell us repeatedly that the time they feel most vulnerable is when treatment provided by their hospital team ends and that this is like “falling off a cliff”. The national cancer patient experience survey (NCPES, 2020) also tells us that:
- 54% of Londoner completing the survey said they do not feel supported by their primary care team during treatment
- 56% said they were told about any side effects of the treatment that could affect them in the future rather than straight away, before they started their treatment
- 63% said that they were offered practical advice and support in dealing with the side effects of their treatment/s
- 68% said that the different people treating and caring for them (such as GP, hospital doctors, hospital nurses, specialist nurses, community nurses) worked well together to give them the best possible care.
The role of TCST’s Personalised Cancer Care Team
We support London’s health and care systems with the handover of managing cancer as a long term condition from hospital care to primary care. We provide strategic and clinical guidance to support those living with and beyond cancer to improve quality of life. This includes cancer as a long term condition in primary care (including education & training), psychosocial support, stable prostate cancer pathway, cancer rehabilitation, lymphoedema, fertility preservation and innovative understanding of cancer prevalence in the capital.
We also provide the secretariat to a pan London Personalised Cancer Care Partnership Board. The Board is co-chaired by Macmillan Cancer Support and the chair of London’s Cancer Patient Advisory Group and has been meeting quarterly since 2015. Members include multi-professional representatives from TCST, cancer alliances, integrated care systems, local authority, third sector, patient partners and a broad range of clinical representatives.
Cancer priorities within the NHS Long Term Plan
The key deliverables for personalised cancer care in the NHS Long Term Plan (Jan 2019) are:
- By 2021, where appropriate, every person diagnosed with cancer will have access to personalised care, including needs assessment, a care plan and health and wellbeing information and support.
- After treatment, patients will move to a personalised stratified follow-up pathway (PSFU) that suits their needs, and ensures they can get rapid access to clinical support where they are worried that their cancer may have recurred. In the COVID-19 Phase 3 guidance, the NHS England/Improvement National Cancer Team has stipulated that cancer alliances should implement at least two additional PSFU pathways over and above breast, colorectal and prostate cancer pathways by 2023/24.
Personalised Stratified Follow Up (PSFU): guidance to accelerate implementation (2021)
Personalised care for cancer: what happens next in London? (February 2020)
Price L et al (2018), “Living with and beyond cancer: How we are transforming cancer care across London”, Multinational Association of Supportive Care in Cancer, Vienna, Austria