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.

The Living With and Beyond programme of work is about supporting people after treatment, ensuring everyone receives the most appropriate care for their needs through the introduction of personalised stratified follow up and quality of life metric. This work 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).

Quality of Life Survey

The Cancer Quality of Life Survey is a national survey run by NHS England and NHS Improvement and Public Health England.

Recognising that quality of life (QoL) outcomes are as important to patients as survival, the survey aims to find out how quality of life may have changed for people diagnosed with cancer. This will help to identify where care is working well, or not so well, and improve the way people are supported to live as long and as well as possible.

Since December 2020, all people who have had a breast, prostate or colorectal (bowel) cancer diagnosis are being asked to complete the survey around 18 months after diagnosis. The survey is now being rolled out further to include all other cancers and invitations are being sent to a 10% sample of patients – this includes rarer and less survivable cancers. From October, the survey will then be sent to 100% of patients, around 18 months after diagnosis.

As an Alliance, we want to encourage as many people as possible to complete their survey so that the information collected fully represents our cancer population. The survey is easy to complete, generally takes between five and 10 minutes and the results will be analysed by Public Health England. It is anticipate that national and regional level reports will start to be made available in autumn 2021.

For more information, please visit the Quality of Life Survey website or watch the two videos below:

Personalised Stratified Follow Up

Personalised stratified follow up 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 are 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

Trust have now implemented clinically agreed protocols and pathways for personalised stratified follow up for breast and colorectal cancer patients, and are currently working towards personalised stratified follow up for prostate cancer patients across the Humber, Coast and Vale region.

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.”

Holistic Needs Assessment: 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.

End of Treatment Summary: 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 Support: 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: Cancer Care Reviews take place in primary care to record a discussion between the patient and their GP / primary care nurse about their cancer journey. Cancer Care Reviews should take place within six months of diagnosis and provide an opportunity 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.

Humber, Coast and Vale Cancer Alliance developed a toolkit to ensure that the reviews GP Practices carry out with their patients are as effective as possible. Click here to download the Cancer Care Review resource pack

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.

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.

Meet the Team

If you have any questions about the Living With and Beyond Programme of work, please get in touch via the email address below.

Alison Cockerill
Programme Manager

Karen Lindley
Macmillan Living With and Beyond Project Officer