Personalised care and improving quality of life outcomes

More people than ever are living with and beyond cancer. Receiving care that is tailored to a person’s needs can have a significant impact on their experience and quality of life.

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

The NHS Long Term Plan for Cancer states that “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 and for other cancers by March 2022.  We estimate that around 80% of cancer multidisciplinary teams (MDTs) are now 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.

Further information

Providing personalised stratified follow-up care

The NHS Long Term Plan for Cancer states that  “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 to people 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 has been made, for example at the end of Quarter 3, 20/21, 87% of trusts have operational breast cancer PSFU protocols in place and 62% of trusts have operational PSFU protocols in place for Prostate and Colorectal patients.

Further information

Measuring quality of life

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”.

To support this goal, we are launching a nationwide Cancer Quality of Life Survey from September 2020. Initially  we  will survey people with breast, prostate or colorectal cancer around 18 months after their diagnosis. These are three common cancers. Inviting people in these groups will generate large numbers of responses to demonstrate the value of the Survey. We will then extend the Survey to people with other cancer types from 2021 onwards.

Measuring people’s quality of life is about understanding the impact of cancer and how well people are living after their diagnosis. This includes a wide range of concerns, such as people’s emotional or social wellbeing, finances, and ongoing physical problems, such as tiredness and pain.

Currently, there are no national outcome measures, or ‘metrics’, that look at the quality of life of people diagnosed and treated for cancer. The information collected from the Survey will be used to create these metrics. This will help us to support the growing number of people living with and beyond cancer. This is an ambitious programme with a scale and depth unmatched anywhere else in the world.

We expect that launching the Cancer Quality of Life Survey 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 a cancer diagnosis.

We want to encourage as many people as possible to complete their survey so that the information collected fully represents our cancer population.

You can find out more information about the Cancer Quality of Life Survey on the dedicated website.