Supporting people to live better with and beyond cancer

More people than ever are living with and beyond cancer. The NHS is leading the way in cancer care by recognising that quality of life outcomes are as important to people as survival.

  • Personalising aftercare and putting patients more in control of their recovery is an important aspect of improving the patient experience.
  • The quality of life (QoL) metric aims to measure quality of life at a scale and depth that isn’t being matched anywhere else in the world, helping to target future work to maximise improvements for patients.

Providing personalised care and support

Receiving care that is tailored to a patient’s needs can have a significant impact on their experience and quality of life. The Cancer Alliances have continued work this year to ensure that every cancer patient receives personalised care and support from diagnosis onwards.

Figures show that most organisations are implementing a more personalised approach to care (often referred to as the Recovery Package interventions). However, the adoption has tended to be for the more common cancers. We are working to ensure that all cancer patients benefit from personalised care and support.

This work also includes improving the provision of services to manage the consequences of treatment, which cause poor quality of life and are often under-recognised. These include psychological difficulties, fatigue, pain, or bowel, bladder and sexual problems.

Interventions to personalise cancer care and support include:

  • Personalised care and support planning, based on Holistic Needs Assessments (HNAs) so that individual needs and concerns can be identified and addressed at the earliest opportunity.
  • Treatment summaries that provide both the patient and their GP with valuable information and prompts for action, so that health and wellbeing can be optimised, including how to seek help if new symptoms arise.
  • Primary care cancer care reviews, that are beginning to evolve into holistic reviews at time points that meets patients’ needs, so that cancer and its consequences are increasingly managed as a long-term condition.
  • A full range of accessible support services and information provision across a local area, so that every patient knows what is available to help them reach their goals after treatment.

Personalised approach to cancer follow up

We are seeing more cancer patients across England receive follow-up care that is personalised to their needs, with the redesign of follow-up pathways for common cancers by the Cancer Alliances.

A ‘self-managed’ follow-up pathway for breast cancer patients has been introduced in many areas. This approach means ongoing cancer surveillance, but fewer face-to-face appointments, with rapid access to support, advice and interventions with the most appropriate clinicians when needed.

By March 2019, this approach will be established in all Trusts, and it is expected that around 70% of people being followed up for breast cancer will be ‘self-managing’. This redesigned follow-up pathway is also being introduced in colorectal, prostate and other cancers, allowing a more sustainable use of NHS resources whilst delivering higher quality, personalised care and better patient experience.

Links to further information

Living with and beyond cancer – Baseline Activity

The Living With and Beyond Cancer – Baseline Activity report sets out baseline activity data from January to March 2017, for Stratified Follow Up and Recovery Package interventions, which are part of the Living With and Beyond Cancer commitments in the National Cancer Strategy. This is the first-time national data of this type has been reported.

Measuring quality of life

Measuring people’s quality of life is about understanding the impact of cancer and its treatment and how well people are living after treatment. This includes looking at the effects on personal finances, the ability to maintain social networks and psychological wellbeing as well as chronic physical problems such as fatigue and pain.

A pilot began in 2017, to develop a new metric that aims to measure the quality of life of cancer patients at a scale and depth that isn’t being matched anywhere else in the world.

The pilot project partners (including five Cancer Alliances, NHS England, Public Health England, the University of Leeds, York Health Economic Consortium and Macmillan Cancer Support) are devising processes for patients to complete quality of life questionnaires and for the responses to be used to create a robust metric, or set of metrics. It aims to measure population-level quality of life and the pilot will provide examples of how QoL metric summaries can be produced to support regional and national monitoring of quality of life.  The pilot has also included some preliminary tests looking at how patients and their health professionals might use QoL questionnaire responses to help address patients’ individual needs.

The pilot project to develop the QoL metric(s) will conclude its data collection phase in June 2019; a report with recommendations for any future roll out activities will follow in September 2019.