More people than ever are living with and beyond cancer. The NHS is leading the way in cancer care by recognising that living a good quality of life is as important to people as survival.
Receiving care that is tailored to a person’s needs can have a significant impact on their experience and quality of life.
NHS England and NHS Improvement are committed to achieving this ambition by supporting the Cancer Alliances to continue their work. Cancer Alliances are working to ensure that every person receives personalised care and support from cancer diagnosis onwards. There are three key areas of this work:
- Providing personalised care and support interventions
- Providing personalised stratified follow up care
- Measuring quality of life
The NHS Long Term Plan for Cancer states that “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.”
Cancer Alliances are working with trusts and primary care to offer these personalised care interventions to people with breast, colorectal and prostate cancer by March 2020, and for other cancers by 2021. Good progress is being made with over 70% of cancer care teams already offering personalised care and support planning.
- Personalised Care and Support Planning (based on holistic needs assessments) ensures people’s physical, practical, emotional and social needs are identified and addressed at the earliest opportunity.
- End of Treatment Summaries provide both the person and their GP with valuable information, including a detailed summary of treatment completed, potential side effects, signs and symptoms of recurrence and contact details to address any concerns.
- Primary Care Cancer Care Review is a discussion between the person and their GP / primary care nurse about their cancer journey. This helps the person to discuss any concerns, and, if appropriate, to be referred to services or signposted to information and support that is available in their community and from charities.
- Health and Wellbeing Information and Support includes the provision of accessible information about emotional support, coping with side effects, financial advice, getting back to work and making healthy lifestyle choices. This support will be available before, during and after cancer treatment.
- Personalised Care web page
The NHS Long Term Plan for Cancer states that by 2021 “after treatment, the person will move to a follow-up pathway that suits their needs, and ensures they can get rapid access to clinical support where they are worried that their cancer may have recurred.”
Personalised Stratified Follow-Up (PSFU) is a vital part of delivering world class cancer services while addressing the serious challenges of demand and capacity throughout cancer pathways. The implementation of PSFU pathways provides better care and experience for patients. By reducing the amount of time that professionals spend seeing patients who are doing well after treatment, it also frees up professionals’ time to focus on other parts of cancer pathways, such as faster diagnosis and treatment, or those with complex post-treatment needs.”
Having PSFU pathways means that when a person completes their primary treatment, they will be offered:
- information about signs and symptoms to look out for, which could suggest their cancer has recurred;
- rapid re-access to their cancer team, including telephone advice and support, if they are worried about any symptoms, including possible side-effects of treatment;
- regular surveillance scans or tests (depending on cancer type), with quicker and easier access to results so that any anxiety is kept to a minimum; and
- personalised care and support planning and support for self-management, to help them to improve their health and wellbeing in the long-term.
Good progress is being made, for example as of March 2019, 85% of trusts have breast cancer PSFU protocols in place.
- Case study: Cancer ‘Person Triggered Follow-Up’ Project to enable living well beyond cancer
- Case study: Boosting confidence after breast cancer in Salisbury
- Watch: Northern Cancer Alliance : Supporting People Who Have Received Treatment
The NHS Long Term Plan for Cancer promised to “introduce an innovative quality of life metric to track and respond to the long-term impact of cancer”.
Measuring people’s quality of life is about understanding the impact of cancer and how well people are living after their diagnosis. This includes looking at a wide range of concerns, including any effect on people’s emotional or social wellbeing, any impact on people’s finances, and if people are experiencing any ongoing physical problems, such as tiredness and pain.
Currently, there are no national metrics looking at the quality of life of people diagnosed and treated for cancer. Introducing a national Quality of Life (QofL) metric will bring significant benefits. It will:
- lead to a step-change in the national debate on the importance of quality of life alongside survival;
- help to benchmark quality of life so that those groups with the worst problems can be identified and targeted for improvement;
- empower individuals to discuss their quality of life with their health and social care teams, and
- allow researchers access to rich data that can enhance our wider understanding of what impacts on quality of life after cancer diagnosis.
A pilot project has been underway since 2017 which has tested approaches to collecting quality of life information through a survey. People with breast, prostate and colorectal cancer in eight hospital trusts have been completing questionnaires. Evidence from the first round of surveys shows that people are happy to fill in the survey online, they find the questionnaires acceptable and relatively easy to complete.
We are now carrying out more survey testing of other cancer types and in more hospital trusts using a refined method based on feedback from the pilot. Information from these tests will be used to decide on a final roll out model. The national cancer Quality of Llife metric will formally launch in mid 2020.