Help and support

All adult patients (aged 16 and over), with a primary diagnosis of cancer, who have been admitted to hospital as inpatients for cancer related treatment, or who were seen as day case patients for cancer related treatment, and have been discharged between April and June each year will be included in the survey.

No, if you do not want to take part, please return the blank questionnaire. You do not need to use a stamp. If you prefer, please email Picker (cpes20@picker.org) or call the helpline number on the covering letter and Picker will remove you from the current survey mailing list.

Yes, that’s fine. You are able to get help from a family member or friend if you need help to complete the questionnaire. However the answers should be given from your point of view- not the point of view of the person helping you to complete the survey. Picker also provides a Freephone helpline where call advisors are available to complete the survey with you over the telephone (please refer to the covering letter that came with the questionnaire, for information).

Your personal details and some information about your cancer treatment have been used to identify you for this survey and will be used to analyse the results. These details were provided by the NHS trust that treated you. The details have been shared with Picker, who are carrying out the survey on behalf of NHS England. Under data protection legislation NHS England is the controller responsible for the processing of your personal data to conduct the survey. Your personal information will be handled securely, and the results published will not identify you. Each questionnaire has a unique number which is used by Picker to identify who has responded to the survey, and to send reminders to those who have not. Section 251 approval is provided by the Confidentiality Advisory Group (CAG) at the Health Research Agency (HRA) ahead of any personal information being shared by NHS trusts with Picker. The Section 251 approval allows your details to be shared without your consent. The approval also provides the reassurance as it is an independent review of the purposes and governance arrangements for the survey. The 2002 Control of Patient Information Regulations allow the processing of confidential cancer patient information including the monitoring and audit of health and health related care provision.

Picker takes its information security responsibilities very seriously and applies various precautions to ensure your information is protected at all times from loss, theft or misuse. Security precautions include appropriate physical security of offices and controlled and limited access to computer systems. Stringent measures have been taken to ensure personal information is securely stored and seen only by the personnel directly involved in the survey. Picker has regular internal and external audits of its information security controls and working practices, and is accredited to the International Standard for Information Security, ISO 27001. NHS England’s Privacy Notice describes how they use personal data and explains how you can contact them and invoke your rights as a data subject. NHS England will protect your information in line with the requirements of the Data Protection Act 2018. The privacy notice can be found via the following weblink:

• https://www.england.nhs.uk/contact-us/privacy-notice/

You can obtain a copy of this by contacting the NHS England Customer Contact Centre via the details below:

• Telephone: 0300 311 22 33;
• Email: england.contactus@nhs.net;
• Post: NHS England, PO Box 16738, Redditch, B97 9PT.

If you have any questions or concerns, please contact the NHS England Insight & Feedback team on the following email:

• england.insight-queries@nhs.net

If you have any questions relating to data protection, please contact the NHS England’s Data Protection Office on the following email:

• england.dpo@nhs.net

You have the right to make a complaint against NHS England regarding data protection issues with the Information Commissioner’s Office. For more information follow the link below:

• https://ico.org.uk/concerns/

Information on how Picker Institute Europe will process your information is available at the following link:

• https://www.picker.org/cookies-privacy/

Your answers are put together with the answers from other people who take part and used to help understand and improve people's experiences of cancer care services. The results will be published on this website. Nobody will be able to identify you in any results that are published.

By participating in the survey, you give permission for us to send your survey response data to the National Disease Registration Service (NDRS) at NHS Digital where it will be included in the cancer registry (you can find out more at www.ndrs.nhs.uk). The NDRS will link your survey responses to your health data using your NHS number date of birth and postcode. Survey responses linked to data about individual patient’s diagnosis, care and treatment can be used by the NHS and researchers to support the planning of cancer services and other research. NHS Digital take great care to keep the information they hold about people confidential and, as with other medical records, strict ethical and security safeguards are in place and access is strictly controlled.

Cancer registration data, including your survey responses, may be shared with the NHS and researchers through the Data Access Request Service (DARS). DARS makes sure that access to data is according to strict data protection laws and that such data sharing will be of benefit to health and social care.

For more information on how NHS England use the survey results to improve cancer services please refer to the 'How will NHS England use my answers to the survey?' section. If you want more information about how we handle CPES response data you might find NHS England’s Privacy Notice useful: (www.england.nhs.uk/publication/nhs-englands-privacy-notice/). The Privacy Notice has a section titled: Those completing surveys or questionnaires which includes information about CPES.

The survey results are used to understand patient experience and to improve cancer services across England.

NHS England will not receive your name and full address, only your answers to the survey alongside your NHS number, postcode and date of birth. You will not be identified personally by NHS England.

Understanding differences in people’s experiences

Within NHS England, the results will be looked at to understand differences in people’s experiences, for example, to see if people answer differently depending on their ethnic group or their type of cancer. This will help to identify where improvements are most needed and for which groups, communities or populations.

Evaluating the new Rapid Diagnostic Centres

Rapid Diagnostic Centres (RDCs) have been introduced into the NHS to get people diagnosed as early and as quickly as possible, for all patients with cancer symptoms or suspicious test results. The survey results will be linked to data from RDCs using NHS number, postcode and date of birth, to make sure that records are matched correctly but not to identify any individual person.

This will help NHS England to understand how people experience cancer care and treatment when they have been diagnosed via RDC services, and how to make improvements to RDCs in the future. More information on the RDC Programme is available here: https://www.england.nhs.uk/cancer/early-diagnosis

The purpose of collecting and analysing data via this survey is to:

• Secure continuous improvement by building on the results of previous surveys and enable local providers and Cancer Alliances to assess their performance improvement with other providers.
• Enable commissioners to assess local improvements in cancer patient experience.
• Provide NHS England and NHS Improvement with an up to date overview of cancer patient experience across England.
• Enable patients to make informed choices about where to go for cancer treatment.
• Provide NHS England and NHS Improvement with an up to date overview of cancer patient experience variation across England.

This collection is mandated for all adult acute cancer services. NHS foundation trusts are mandated under schedule 6 of their Terms of Authorisation.

The survey will cover all acute and specialist NHS trusts in England that provide adult acute cancer services. All adult patients (aged 16 and over), with a primary diagnosis of cancer, who have been admitted to hospital as inpatients for cancer related treatment, or who were seen as day case patients for cancer related treatment, and have been discharged between April and June each year will be included in the survey.

Aside from the national importance of this survey, there are important direct benefits for your trust in taking part:

• You will receive a bespoke report, where over 20 responses are received, on your trust’s cancer patients’ experience, broken down by cancer type grouping.
• You will be able to benchmark your cancer services within your trust and nationally.
• You will receive a free-text report providing automated semantic and sentiment analysis of written comments received as part of the survey.
• The results will help your trust to meet the requirement to measure patient experience as set out in the Peer Review Measures for Cancer.
• The results could help your trust to populate the Quality Accounts.
• The results will help inform the commissioning of local services.

Following the same process as in previous years, the trust will be asked to put together the list of names of patients that have been treated for cancer and remove the names of any patients who have died or have not been told about a confirmed diagnosis. Carefully tested instructions will be provided, and Picker will provide telephone support as and when it is needed. Trusts will be required to respond to and queries Picker may have regarding their patient list within 2 working days. This is to reduce any delays in approval. All other survey work, including removal of duplicates, DBS checks, printing and posting survey packets and reminders, data entry and producing reports, will be carried out by Picker. Picker will work with NHS trusts to arrange appropriate data security agreements. It would be very helpful if trusts could please:

• Attend one of the webinars being held in August.
• Confirm the expected date of submitting your patient list when prompted by Picker.
• Encourage your cancer leads to support this survey.
• Ensure your patient list is submitted within plenty of time to be approved by the start of fieldwork
• Ensure your Information Systems teams respond to data queries from Picker within 2 days.
• Commit to using the survey results to drive further improvement.

NHS England and NHS Improvement’s lawful basis for carrying out the survey is covered as a ‘public task’ under Article 6(1)(e). This provides a lawful basis for processing personal data where: “…processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”. In addition, NHS England and NHS Improvement’s lawful basis for using special category (health) data to carry out the data is covered under Article 9(2)(h): “9(2)(h) processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3…”

No. The Department of Health and Social Care has confirmed that the survey is exempt from the National Data Guardian opt-out. Therefore, NDG opt outs should not be applied to the cancer patient experience survey.

Yes, patients have always been able to opt out of the survey and this still applies. Patients can opt out of the survey ahead of their details being shared with the survey contractor. They can do this by responding to the fair processing notice presented by the trust. Trusts should keep records of those who have opted out ahead of the survey sample being drawn and ensure that those patients are not included in the sample submitted to the survey contractor. In addition, the survey covering letter, first and second reminder letter, and questionnaire front cover will emphasise that participation in the survey is entirely voluntary and provide details of how to opt out of the survey. Patients will be provided with contact details of the survey contractor to allow them to opt out of the survey. Should patients contact the trust and ask to be opted out of the survey instead, please notify Picker. Please note that patient opt outs of the cancer registry held by the National Cancer Registration and Analysis Service are not applied to the survey.

It is not practicable to seek patient consent before sending out surveys. Therefore, ahead of contacting trusts to share patient data for the purposes of the survey, NHS England and Picker ensure that Section 251 approval is in place. We therefore do not consider that consent is required to include patients in the survey. However, patients must be given the opportunity to opt-out, and this is achieved via fair processing notices displayed in areas where people receive cancer care.

Picker takes its information security responsibilities very seriously and applies various precautions to ensure personal information is protected at all times from loss, theft or misuse. Security precautions include appropriate physical security of offices and controlled and limited access to computer systems. Stringent measures have been taken to ensure personal information is securely stored and seen only by the personnel directly involved in the survey. Picker has regular internal and external audits of its information security controls and working practices, and is accredited to the International Standard for Information Security, ISO 27001. Picker are compliant with the Data Security and Protection Toolkit which enables organisations to demonstrate that the way they hold and process information meets information governance policies and standards. The NHS trust must take steps to ensure that patient personal data shared with Picker is done in a secure way by following the guidance provided by Picker to compile and share your patient sample (available in the sampling handbook/guidance manual).

Feedback can be provided through the Patient Advice and Liaison Service (PALS) or patient services manager for the NHS trust where you received care. A list of relevant contacts can be found at the following site: https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/.

Specific complaints can also be made through the Trust where you received your care. Each Trust has a member of staff responsible for complaints who will try to resolve the matter with you.

If you would prefer to give anonymous feedback you could ask staff at the hospital for information about how to give feedback using the Friends and Family Test (FFT). The FFT is designed to be a quick and easy way to give anonymous feedback that will go directly to the staff providing your care.

Alternatively, you can contact NHS England:

• Email: england.contactus@nhs.net with "For the attention of the complaints team" in the subject line
• Phone: 0300 311 22 33

More information about making a complaint can be found on the following websites:

• https://www.england.nhs.uk/contact-us/complaint/
• http://www.nhs.uk/NHSEngland/complaints-and-feedback/Pages/nhs-complaints.aspx