Living with and Beyond Cancer

Around 53,000 people in the Humber, Coast and Vale region are currently living with or beyond cancer. We are working together to improve the care and support people with cancer receive to enable them to be more in control and better able to cope with their treatment and recovery.

This programme of work is about supporting people after treatment, through the introduction of personalised stratified follow up, ensuring everyone receives the most appropriate care for their needs. This is supported by offering personalised core care interventions such as holistic needs assessments, care plans, treatment summaries, health and well-being information, education and support and cancer care reviews (in primary care).

Personalised Stratified Follow Up

This is an effective way of certifying that care is adapted to ensure patients receive the post-treatment follow up they need. It tailors each follow up to the needs of individuals and improves patient experience and quality of life. This includes ensuring each patients’ needs are met in a more timely manner and that they are better informed about their disease, treatment, signs of recurrence and any longer-term effects. There is an increased focus on health and well-being and ensuring patients are informed to make healthier lifestyle choices and to manage their care better.

Patients on a stratified follow-up pathway should be offered:

  • Information about signs and symptoms to look out for which could suggest their cancer has recurred or progressed
  • Rapid access back to their cancer team, including through telephone advice and support, if they have any concerns about any symptoms, including those which could be due to possible side effects of treatment
  • Regular scans and/or tests, with quicker access to results to reduce anxiety
  • Personalised care and support planning to enable them to self-manage as appropriate and to improve their health and well-being going forward

Trusts have implemented clinically agreed protocols and pathways for personalised stratified follow up for breast cancer and are next focussing on developing and implementing them for colorectal and prostate cancer.

Personalised Core Care Interventions

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.”

A holistic needs assessment and care plan looks beyond a patient’s clinical needs to consider their emotional, practical, social, spiritual, financial and other needs and how they can be met. A care plan is then drawn up to address them. It may include signposting to other organisations and support groups.

A treatment summary provides patients with information about their diagnosis, the treatment they have received, follow up, possible side effects of treatment, signs and symptoms to look out for and how to access rapid support etc at the end of treatment.

Health and well-being information, education and support is provided to patients at the end of treatment. It helps them to access information about emotional support, coping with side effects, financial advice, getting back to work and making healthy lifestyle choices.

Cancer Care Review – this takes place in primary care and is a discussion between the patient and their GP / primary care nurse about their cancer journey. It should take place within six months of diagnosis and 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

An empty room at the Cancer Care centre in York - the room is filled with sofas and side tables. There are big windows along the right hand side of the room.

Cancer Care Review

Cancer Care Review packs provide information and tools for GP practices to support them in carrying out Cancer Care Reviews effectively.

The Cancer Care Review programme has been developed nationally with Macmillan Cancer Care and is part of a package of recommendations aimed at providing for World-Class Cancer outcomes across the UK. We know that Cancer Care Reviews are being undertaken in primary care for the majority of cancer patients in our local area.

The toolkit which the Alliance have produced will help to support GP practices to ensure that the reviews they carry out with their patients are as effective as possible.

Click here to download the Cancer Care Review resource pack

Quality of Life metric

Four members of the Positive Notes choir - a singing group for cancer survivors. They're wearing black t shirts with their logo on and sitting around a table laughing.

In the NHS long term plan for cancer, it stated that an innovative quality of life metric would be introduced to track and respond to the long term impact of cancer. It will look at a wide range of concerns, including any effect on a patient’s emotional or social wellbeing, any impact on their finances and whether they are experiencing any ongoing physical problems such as tiredness or pain.

Development began in 2017 and the resulting questionnaire has been piloted in eight hospitals.

The quality of life metric was due to be launched in June 2020 but has been put on hold due to the COVID-19 pandemic.

For more information about the Living With and Beyond Cancer programme go to:

Health and Wellbeing Support

Health and Wellbeing Support

If you or someone you know has been diagnosed with cancer, information and support is available. Click here to access Macmillan information and videos that aim to support those affected by cancer.

Support Groups

Cancer support groups give you the chance to talk to others who can understand what you are going through. Click here to find some support groups that are available in the Humber, Coast and Vale area.