About this privacy policy

We have sent a survey to you and your parents. It asks questions about your cancer or tumour care.

A privacy policy tells you how we will use and look after the information you tell us.

The law says we have to keep people’s personal information safe.

Personal information tells people who you are.
Things like your name, phone number and address.

This privacy policy tells you:

What information we have about you.

How we will use and look after your information.

Your rights. Your rights are things you are allowed to ask us to do with your information.

How to contact us.

About our survey

We are NHS England. We are in charge of making sure the NHS works well across the whole of England.

It is part of our job to ask people about how to make cancer and tumour care better.

Cancer is a disease people can get. It can be very serious and can make you ill.

Your body is made up of tiny cells.

A tumour is when a group of broken cells grow and stick together in a lump.

Some tumours do not cause harm and
are not cancer.

Your answers help us to make cancer care better for patients in England.

If you take part, you do not have to answer all of the questions.

If you do not want to take part, please let us know.

Phone: 08000 720 069

It is free to phone this number.

What information we might have about you

Your name.

You or your parents’ address, email address and phone number.

Your NHS number. This will be on a letter from the hospital or doctor.

Your sex.

Your ethnic group. Ethnic group is your race and background.

Your date of birth.

The hospital that looked after you.

The dates when you went to hospital. And the dates you left hospital.

The reason you were in hospital.

What kind of cancer or tumour you have or had.

We have this information so we know to send the survey to you and your parents.

We will also get information from your answers to the survey.

Keeping your personal information safe

NHS England have asked a service called Picker to run our survey.

There are rules we must follow to keep your information safe. There are rules we must follow to keep your information safe.

We will keep all your information locked up safely on our computers.

We will keep your information for as long as we need it. Then we will delete it.

If you want us to delete your information sooner, tell us.

What happens after the survey

We will look at everyone’s answers
altogether.

Then we will write some reports about what we have found out.

We will share our reports on our
website:

www.under16cancerexperiencesurvey.
co.uk

We will not use your name in our reports.

That way, nobody can tell it was you who told us.

We will share everything you wrote on the survey with the NHS trust that cared for you.

Contact us

Contact Picker if you have any
questions about the survey.

Or if you want to know more about
how we look after your information.

Phone Picker at: 08000 720 069

It is free to call this number.

Email:
under16cancersurvey@pickereurope.
ac.uk

Write to:
The U16 CPES Team
Picker Institute Europe
Suite 6
Fountain House
1200 Parkway Court
John Smith Drive
Oxford
OX4 2JY

You can also contact NHS England.

Phone: 0300 311 22 33

Email: england.contactus@nhs.net

Or you can email the Data Protection Officer at NHS England:
england.dpo@nhs.net

Write to:
NHS England
PO Box 16738
Redditch
B97 9PT

How to complain

Complain means telling us you are not happy.

You might not be happy with how we
have looked after your information.

You can tell the Information Commissioner’s Office.
It is called ICO for short.

Email: casework@ico.org.uk

Online: ico.org.uk/global/contact-us/