Trust Guidance for Raising Awareness

The National Cancer Registration and Analysis Service (NCRAS), which is part of NHS England, collects data on all cancer patients being treated by the NHS in England. Information about their disease and the treatment they are receiving helps to:

• improve the quality of care
• plan cancer services
• track cancer rates and establish survival statistics

It's really important that patients know this is happening and we'd like your help to make sure they do.

1. Data about them and their cancer diagnosis is automatically collected and passed to NDRS.
2. This data helps doctors and researchers understand more about cancer, such as how many people have the disease or who might get it in the future and ensure they get the best care possible.
3. They can opt out if they wish and it won't affect the quality of care they receive.

1. Use our form to record who is responsible for the process of informing patients about cancer registration and checking that the guidelines are followed.
2. Use our form to record information about how existing and new staff are told about cancer registration so they can talk about it with patients.
3. Use our form to record the arrangements in your trust for providing information to patients.

1. Every patient diagnosed with cancer should be given our leaflet about cancer registration.
2. Patients prefer to be told about cancer registration by a member of their healthcare team in a face-to-face conversation. As far as is practically possible, patients should be told at the earliest appropriate time after diagnosis.
3. Patients should feel able to ask their healthcare team questions about their rights and the way the data about them and their disease is used. They should be helped to get further information if they want it.

There are a few other ways trusts can raise awareness of cancer registration:

Working with the Patient Advice and Liaison Service (PALS)

Patients may prefer to speak to the PALS about cancer registration. It may help to give your PALS team a copy of the leaflet and FAQ sheet included with this guide. 

Local information materials

Trusts might consider including information about cancer registration in their own patient information materials. The suggested statement below could be included in relevant leaflets, web pages and appointment letters. 

Signposting to other sources of information

There are a number of NDRS and partner led sources of information on cancer registration:

• the Macmillan Cancer Support website provides further information on the review of informed choice for cancer registration 
• general support and guidance on the Macmillan Cancer Support and Cancer Research UK websites
• local information centres, such s Macmillan and Maggie's 
• you can also contact NDRS directly about accessing further support or information on can cancer registration via the NDRS contact us page , email the team at ​​​ [email protected] or speak to your local Data Liaison Manager (see below)

The Data Liaison team within the National Disease Registration Service (NDRS) has a wealth of knowledge on cancer pathways and processes within NHS Trusts. NHS teams submitting data to NDRS can seek advice, support and find out more about the data improvement initiatives available to them directly from the regional Data Liaison Managers:

When a person is diagnosed with cancer in England, information about them is automatically collected by the National Disease Registration Service, which is part of NHS England. This data tells us how many people are diagnosed with cancer, what treatments they are having, what drugs are effective and whether the overall picture is getting better or worse.

This information is vital to help plan cancer services and identify where further progress is needed so that we can improve the lives of all people affected by this disease.

For more information on Cancer Registration in England visit www.ndrs.nhs.uk or pick up a cancer registration leaflet in clinic today.