Resources to support a quality cancer care review

Background

In November 2024, a co-produced project group was established led by the East of England Cancer Alliance (EoECA) Patient Partnership Group (PPG) to look at how we could use National Cancer Patient Experience Survey (NCPES) results to improve Cancer Care Reviews (CCRs). (See appendix 1.)

This resource pack is the outcome of this project, designed to support Primary Care teams to conduct quality care reviews for all patients diagnosed with cancer. This resource pack is designed to offer a best practice guide to Cancer Care Reviews based on patient feedback, and patient experience information.

The project group was made up of patients with lived experience, representatives from Primary Care, and Integrated Care Board (ICB) cancer teams from across the East of England.

Why are cancer care reviews important to patients?

Patients often describe the period of time after their secondary care treatment was finished as a lonely and anxious time when the impacts of what has happened to them are felt more keenly. Their cancer treatment may have ended, but they left with physical and emotional impacts, as well as impacts on their daily life such as financial worries, or relationship issues. This is a time when patients need further help and guidance on how to access ongoing support.

From July 2022 to December 2023 the EoECA conducted a project to collect ‘I statements’ from people with lived experience with cancer. The project was reported to the Regional Cancer Board in October 2024. The report described the outcomes of the I statement work in a number of key areas including aftercare when secondary care treatment for cancer was finished and highlighted the need for effective ongoing support and care for patients. Read the full report here. The I statements report said:

After cancer care – Patient Focus and Access

Themes.

People described the period after treatment as one of relief it was over, but also being left with a sense of disbelief and shock, but with no-one to talk to.

People described a sense of fear that any ailment or pain was a reoccurrence of their cancer and that created fear and stress for them.

People describe this time as lonely as all the help and support drifts away.

People also describe a lack of understanding from family and friends of the aftereffects of cancer treatment on their ongoing health.

I statements.

I would have liked more checks after my cancer treatment as I was fearful it would return.

I am left feeling very anxious. I would like some mental health support as part of aftercare.

I need more support for my return to work.

I don’t feel there is any such thing as cancer aftercare. This diagnosis is for life.

I am constantly worried my cancer will come back and have no-one to talk to about this.

Consistent and effective CCRs could help to alleviate these feelings and provide access to much needed support for patients. A CCR provides patients with the opportunity to consider how best to cope in the future with the experiences they have had and the consequences of their treatment.

Why are cancer care reviews important for Primary Care services?

A full and effective CCR can provide support for patients towards self-management following cancer diagnosis and treatment. Providing the person living with and beyond cancer an opportunity to discuss how they can personalise their care and access the support they need. Together with their healthcare professional they can agree a care plan that best meet their needs. In addition, a CCR can provide prevention support through advice about healthy lifestyle and physical activity.

CCRs should be patient led and can help identify what support is available either through the practice, in the community, hospitals, local and national support groups as well as giving the patient the information they need.

Quality Outcomes Framework

Primary Care plays a significant role in helping to support patients who have received a cancer diagnosis and as a result had attracted Quality Outcome Framework (QOF) points for CCRs. Indicators were added to help increase the personalisation of cancer care and to allow patients to have their CCRs at a time when they need it most:

At the time of a patient’s diagnosis (within 3 months)

After a patient has received acute treatment (within 12 months)

The requirement for CCRs for QOF was retired in the 2025/26 contract but are still considered best practice. While practices no longer need to maintain dedicated cancer registries or track CCRs for QOF purposes, they are still encouraged to provide information about cancer support services within three months of diagnosis and conduct a review within 12 months. These reviews are seen as important for personalised care, helping patients talk about their experience and understand what support is available. 

Resources

The EoECA Patient Partnership Group have collated the following resources to support you to hold quality CCRs with your cancer patients. Macmillan have worked extensively with patients and Primary Care teams to produce a series of resources to support Primary Care teams to hold quality CCRs. Links to these resources as well as those developed by the PPG are given below.

Cancer Care Review process map

Below is a suggested process map (from Cancer Diagnosis) which can be followed by the GP practice.

The process map can be accessed here.

Cancer Support Appointment– 3 months appointment

This should be an informal telephone, virtual or face to face appointment to discuss supporting the patient’s diagnosis and informing them of any support that is available from the practice. It should be used to discuss areas of concern the patient may have in respect of their cancer care journey.

Cancer Care Review – 12 months appointment.

The structure for a Cancer Care Review at 12 months could include such things as:

Discussing the patient’s diagnosis, treatment and potential consequences they could encounter which could affect their life, i.e. physical, emotional, financial, relationships, practical concerns, etc.

Giving an opportunity to have a medication review (if necessary).

Look at the support network they currently have and what further support is available to them in the community and further afield, signpost to other sources of support as appropriate.

Give the individual the opportunity to discuss any other worries/concerns they may have.

Further helpful advice can be found on the following link:

Macmillan, Primary Care 10 top tips – Carrying out an effective Cancer Care Review

How to prepare for a Cancer Care Review at both 3 and 12-months stages

The patient should initially be sent an invite letter asking them to make an appointment for their CCR along with a Concerns Checklist which they can complete either before or during their appointment. The letter and checklist should be sent ahead of the appointment to allow the patient time to prepare for the review. Practices also have access to online questionnaires and a Florey survey which can be sent to the patient for them to complete before their appointment, this can be done via SMS messaging service. The EoECA PPG have also developed a patient leaflet to be sent to patients alongside the invitation letter and checklist. They can be accessed via the links below:

Please view: Sample invitation letter

Please access: Patient leaflet – Your Cancer Care Review

Please access: Macmillan - Cancer Care Review concerns checklist

Snomed codes

Cancer Care Review templates

The now retired QOF specified the use of the Macmillan CCR template. This is an effective tool to ensure that the patient’s needs are identified and met.

The Cancer Care Review is also a record of what discussions have been held with the patient which can be coded on the relevant GP IT portal. The updated Cancer Care Review template can be found on the following IT systems:

Ardens

EMIS

INPS

Vision

TPP SystmOne

C the signs

Further information on how to access the GP IT systems can be found here. If you experience any difficulties in accessing the Macmillan Cancer Care Review template, undertaking searches on the system or would just like further information please email macdocs@macmillan.org.uk

Social prescribing for cancer patients

People living with cancer have varied needs and cancer can affect all aspects of their life, from relationships to work or finance. Cancer can have a huge emotional impact on the individual and those around them. All patients should be considered for a referral to a social prescriber as part of the cancer care review. As individual needs vary, some people may not require a referral, others may only need limited contact with the social prescriber. However, for others, more regular contact and review/follow up might be necessary.

The aim of social prescribing models is to help people live their lives as well as possible, with a focus on supporting them to take control of and to improve their health, wellbeing, and social welfare. For more information on the role that Social Prescribers can play in supporting people living with cancer and how Primary Care Networks can get the best out of these roles, please download the MacMillan resources below.

MacMillan Social Prescribing for Cancer Patients

MacMillan Top Tips – Social Prescribing