Why have I been sent a questionnaire?
You have been sent a questionnaire as a parent or carer of a child who has recently received NHS cancer or tumour care or treatment in England. Parents of children aged under 16 at the time of their care, with a diagnosis of cancer or a non-malignant brain, other central nervous system or intracranial tumour, or non-cancerous blood disease, are being contacted. Both children and parents are invited to give feedback. The questionnaire asks about your experiences of children's NHS cancer and tumour care.
Your views are very important in helping us understand how children's NHS cancer and tumour services can be improved. Even if you have filled in a questionnaire before, it's still really important that we hear from you.
There is more information about the survey on the 'About the survey' page.
You will have been sent a survey in the post which can be completed and returned to us in the Freepost envelope provided. The survey can alternatively be completed online here by entering your access code, which can be found on the covering letter that came with the paper survey (see image below).
Do I have to take part?
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 at under16cancersurvey@PickerEurope.ac.uk or call the helpline number (08000 720 069) and Picker will remove you from the current survey mailing list. This will ensure we don’t write to you again about the current survey. You do not need to give us a reason and it will not affect the care you receive from the NHS in any way. If a mailing is already underway then you may receive a reminder letter in the post, but please ignore this. If you have told us you do not want to take part, you will not receive any further reminder letters to complete the questionnaire.
If we do not hear from you in 2-3 weeks, we will send you a reminder.
If your child is aged 8-16, there are two sections to the questionnaire (one for children and one for parents). The questionnaire can be returned with either, both or no sections completed (i.e. we will use responses from parents or children who have completed their section of the questionnaire, even if the other section has not been completed).
If I take part, do I have to answer every question?
No. You don’t have to answer every question if you don’t want to.
I have received a survey, however I don’t have cancer
Anyone who has received treatment or care relating to cancer in the last 12 months could receive a survey. This includes children (and their parents/carers) who:
- currently have cancer
- have had cancer in the past but are now better/in remission/ recovered, and are receiving follow-up care
- have had cancer in the past but are now better/in remission/ recovered, and have recently had an appointment, hospital visit, operation or procedure in relation to their past cancer
- have a non-malignant brain, other central nervous system or intracranial tumour
What will happen to my/my child's personal details?
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 and NHS Improvement. Under data protection legislation NHS England and NHS Improvement is the controller responsible for the processing of your personal data to conduct the survey. Your personal information will be handled securely, and the published results 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 responded.
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 only seen 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.
For information please go to 'I have a question.' If you seek more information about how NHS England and NHS Improvement uses personal data and how you can contact us and invoke your rights as a data subject, please see our privacy notice:
You can obtain a copy of this by contacting our Customer Contact Centre:
Telephone: 0300 311 22 33;
Post: NHS England, PO Box 16738, Redditch, B97 9PT.
Parents’ email address and mobile phone numbers will also be collected where possible to explore future ways of sending the survey.
Picker, and approved NHS England and NHS Improvement staff and researchers, treat individual answers as confidential and adhere to all aspects and provisions of the General Data Protection Regulation and all other relevant legislation, including requirements for secure storage.
NHS staff will not know if you take part or not.
No responses will be published individually: all findings are published either at NHS provider site/ NHS Trust level, Children’s Cancer Network or across England as a whole.
To further protect confidentiality, the data will not be reported for questions where a small number of responses are received. Further information about this can be found with the survey results technical documentation.
The survey data – with NHS Number, postcode and date of birth, but not name and full address – will be shared with Public Health England for further analysis linked to the National Cancer Registration and Analysis Service database.
Information that does not directly identify you may be made available to research organisations. Any research organisation analysing the data will be subject to strict rules for the security and confidentiality of your information. They will not use your details for other purposes.
Your answers and personal information will not be shared with others unless required by law or where there is a clear overriding public interest.
I need help completing the survey
For answers to common questions, please see 'I have a question.'
Please call the Freephone number on: 08000 720 069 if you:
- would like to use interpreter services for helping completing the survey in a different language
- would like the helpline staff to help complete the survey over the phone with you. They will read the survey questions out and record your responses
- have any questions about the survey
External information and support
If you are a child with cancer, or a parent of a child with cancer, and are looking for information and support not related to this survey, please see the support links page for links to organisations which may be able to help.