Living with and beyond cancer

Who is a person “living with and beyond cancer”?

Anyone who has had a diagnosis of cancer is someone who is living with or beyond their cancer. This could be someone who has completed their treatment or having ongoing treatment for their cancer.

There are two million people living with or beyond cancer in the UK. This figure is set to rise to four million by 2030. Many say that they felt they had lots of support during their treatment, but once it ended, it was hard to make a transition to a new way of life. It was like entering a whole new world where they had to adjust to new feelings, new challenges and different ways of looking at their health and wellbeing.

People who have finished cancer treatment often report having difficulties financially, emotionally, practically and medically. Far more can be done to improve the lives of people affected by cancer. Support for people living with or beyond cancer should not finish after treatment but should continue into a phase of supported aftercare. 

What problems do a person living with and beyond cancer face?

People who have finished treatment may experience difficulties returning to normal life. They may:

  • struggle emotionally, needing to adjust to changes treatment has made to their body

  • have to cope with short-term and long-term side effects of their cancer or its treatment

  • have to live with the knowledge that their cancer cannot be cured, even though they feel healthy

  • have difficulties accessing information about their condition or any after effects they may experience

  • struggle financially as the household income decreases

  • experience problems returning to the workplace

The Recovery Package

The Recovery Package is a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer. 

Holistic needs assessment (HNA) - identifies the individual needs of the person affected by cancer and contributes to a consultation. The consultation can then be focused on the needs identified, a care plan can be developed and an appropriate referral can be made to services. The patient receives a copy of the care plan to enable self management; further copies are stored in the medical records and can be sent to the GP.

Treatment summary - is developed by the multidisciplinary team to inform the patient and the GP of the care and treatment received.  The patient receives a copy to share with other family members and health care providers. A copy is also sent to the patient’s GP practice. Further copies are stored in the medical records and inform emergency/unplanned admissions.

Cancer care review - is carried out by the GP practice within six months following a diagnosis of cancer and gives the patient information to enable self management.

Health and Wellbeing Clinics - are education sessions to give the person affected by cancer the holistic information they need to enable rehabilitation and self management.

These elements are part of an overall support of self management – physical activity as part of a healthy lifestyle, managing consequences of treatment, and information, financial and work support. Support for carers, especially their emotional needs, should also be taken into account.

This diagram explains how the Recovery Package fits into an overall support of self management for people living with and beyond cancer.

The Recovery Package can lead to improved communication and better quality and equity of care.

The concept of the Recovery Package was developed and tested by the National Cancer Survivorship Initiative (NCSI) - a partnership of Macmillan Cancer Support, Department of Health and NHS England - to assist people living with a diagnosis of cancer to prepare for the future, and identify their individual concerns and support needs. This enables people to return to as near a normal lifestyle as possible, including returning to work. The Recovery Package is still recognised as key to improving patient experience and outcomes and has been included as a key priority in the UK’s Independent Cancer Taskforce Strategy (2015-2020).

Cancer rehabilitation

Evidence shows that many people affected by cancer have unmet needs, particularly at the end of treatment, whilst others are struggling with consequences of treatment that could be either avoided or managed. Cancer treatment is often invasive and can have both short and longer term consequences, some of which may arise several years or decades after treatment was administered.

The consequences of cancer and its treatment can include:

  • emotional and psycho-social problems

  • fatigue

  • pain

  • incontinence (bowel and bladder)

  • sexual difficulties

  • osteoporosis

  • cardiovascular disease

  • swallowing and speech difficulties

  • lymphoedema

A failure to identify and manage these problems effectively can compromise survival, quality of life for both patient and their carers, recovery, patient experience and patient safety.

Pathways of care

The NCSI also identified changes could be made to the pathway of care for cancer survivors, and this is based on a model of care for people with long term conditions. A stratification process identifies which care pathway is most suitable for each patient, based on the level of care needed for the disease, the treatment and the patient’s ability to manage, and therefore what level of professional involvement will be required. New pathways of care must be underpinned by care co-ordination systems,  robust remote surveillance, so that patients will automatically be recalled if there is a problem identified in their tests, and rapid access to appropriate services if the patient has a concern or there is suspicion of further disease.

 

This content was reproduced with permission from Macmillan Cancer Support