What are the issues?
Research suggests people are not supported well in the time after having their cancer treatment. This manifests for people living with cancer by having 60% more A&E attendances, 97% more emergency admissions and 50% more primary care contacts in the 15 months after a cancer diagnosis (Nuffield Trust, 2014). Latest figures also tell us that there were 232,000 Londoners living with and beyond cancer in 2017, and that this could rise by 52% by 2030 (PHE, 2019). We also know that 70% of people living with and beyond cancer also have at least one other long term condition (Macmillan 2015).
Although more people are surviving cancer, unfortunately this does not necessarily mean that people are living well. 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
What is TCST’s Personalised Cancer Care Team doing?
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 and improve quality of life. This includes cancer as a long term condition in primary care (including education & training), stable prostate cancer pathway, psychosocial support, cancer rehabilitation, lymphoedema, fertility preservation and innovative understanding of cancer prevalence in the capital.
In March 2020, TCST’s Macmillan funded programmes ended. We held a “Next Steps” legacy event, together with South West London CCG’s Macmillan primary care nursing programme, which was facilitated by Peter Goulding, Chair of London’s Cancer Patient Advisory Group and co-chair of London’s Personalised Cancer Care Partnership Board. This event was hugely popular and very well received by our stakeholders. The Next Steps event report, bespoke packs for London CCG’s and other resources from the event were provided to London’s systems for business planning and to inform local cancer strategies.
During the COVID-19 pandemic, we developed guidance and collated resources to support delivery of psychosocial support, personalised stratified follow up (also known as patient initiated follow up), personalised cancer care in primary care and cancer prehabilitation during COVID-19 recovery.
What are the priorities in the NHS COVID-19 Phase 3 Recovery Plan and the NHS Long Term Plan?
A key component in the NHS’s Phase 3 Recovery Plan (Aug 2020) that is relevant to cancer includes Patient Initiated Follow Up (PIFU). Essentially this is the same as Personalised Stratified Follow Up as specified in the cancer chapter of 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 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/ By 2023, stratified follow-up pathways for people who are worried their cancer may have recurred. These will be in place for all clinically appropriate cancers.
London Personalised Cancer Care Partnership Board
We 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.
Conferences, awards and publications
Across our programmes, TCST’s personalised cancer care team has presented at nine national and international conferences between 2016-2020. We have also been finalists and winners for three national awards and published three journal articles.
In 2018, we were delighted to present our overall programme at MASCC in Vienna:
- 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