The Neonatal Care Experience Survey is about your experiences with NHS neonatal care. This survey aims to understand parents’ experiences of neonatal care for their babies across England. We are inviting you to take part so we can learn from your experiences. Your feedback will help NHS England improve neonatal services for babies and their families.

We send text messages to remind people to take part in the survey when we have a mobile number on record. You may receive a text message before your survey letter arrives. This is due to normal variations in postal delivery times. The text and letter are both part of the same official survey process.

Text messages are sent from ‘NHS_Survey’, although this may appear slightly differently depending on your phone provider or device. Each message contains a unique link that allows you to complete the survey online without needing to enter your personal password.

Posters were also displayed in participating trusts, so you may have seen information about the survey.

You are receiving this survey because your baby recently spent time in hospital neonatal care. It is sent to mothers, though there is a section that the other parent may complete.

Picker, an independent research agency, administers the survey for NHS England. NHS England leads the National Health Service (NHS) in England. You can find out more about NHS England on the NHS England website.

Taking part in the survey is voluntary. If you do not want to take part, it will not affect your care or your baby’s care and you do not need to give a reason. If you do not want to take part in the survey, please contact Picker by email at neonatal.survey@pickereurope.ac.uk or by calling the Freephone helpline on the survey invite.

Please answer as many of the questions as you can. The more questions you answer, the better we can understand your experience of neonatal care. This will help NHS England and neonatal services improve care in the future.

If there are any questions you would prefer not to answer, or that make you feel uncomfortable, you can leave them blank.

Yes. Your progress will save automatically when completing the survey online. If you close your browser, any answers you’ve entered so far will be saved.

When you are ready to continue, simply log in again using your password and you can carry on where you left off.

When you reach the section for the baby’s other parent, they may either continue immediately or return to it later. The survey will save automatically at that stage, ensuring no progress is lost.

If the other parent chooses not to complete their section, or if it is not relevant to you, you may simply close the survey. Your responses will already have been submitted

Yes. You can ask someone to help you fill in the survey if you wish. Please make sure the answers reflect your own views and experiences, not those of the person helping you.

A Freephone helpline is also available, 0800 103 2805 (10am to 4pm Monday to Saturday). Call advisors can answer questions or, if needed, complete the survey with you over the phone.

Everyone invited to take part in the Neonatal Care Experience Survey is given a unique password and QR code. A QR code (or ‘quick response’ code) is a type of barcode that leads directly to a website or webpage. Using a unique password or QR code ensures your name and address are kept separate from your answers. This means your feedback can be carefully recorded while keeping your responses confidential.

If you have lost your password, you can request a replacement by contacting Picker, please email with your request and we will email this back to you. It may take a few days as all passwords are held securely.

Or you can also wait for your reminder letter which will be sent to anyone who hasn’t yet completed the survey. Your password will be printed on the first page of the letter.

Each person invited to take part in the survey is given a unique password on their letter that they can use to complete the survey online.

To complete the survey using the QR code, scan the QR code with your smartphone camera and you will be taken directly to the online questionnaire.

Another way to complete the survey online is to use your password which can be found on the first page of your letter with an online link. If you enter the link into your device, you will be asked to enter your password so you can begin the survey.

Invitations will also be sent out by text message to your phone. Just click on the link in the text to take part. The link is unique to you, there is no need to log in or enter a password.

If you have lost your password, please email with your request and we will email this back to you. This may take a few days as all passwords are held securely.

Or you can wait until you receive the next reminder letter, which will be sent to everyone who hasn’t filled in the survey. Your password will be printed on the first page of the letter.  

The survey will close around two months after the first survey invitation is sent out to you. A final date for completing the questionnaire will be included in the final letter and text message about the survey. Survey responses returned after the closing date will not be included and the online login details will stop working.

Once you have filled in the survey, Picker will put your answers together with the answers from other people and publish the results on this website. We will remove any information which could be used to identify you, such as your name, from the answers you give.

We may share your answers with approved researchers, but only in a way that does not identify you and in line with strict rules about data processing. By taking part in the survey, you give permission for your data to be shared in this way. For more information visit: www.england.nhs.uk/contact-us/privacy-notice.

Personal details and some limited information about your baby’s neonatal care have been used to identify you to invite you to take part in the survey and to analyse the results.  These details were provided by the NHS trust that treated your baby.  On advice from the Confidentiality Advisory Group, an independent group which includes members of the public, the Secretary of State for Health and Social Care has given support for confidential patient information to be used to identify babies who received neonatal care, and to invite parents to take part in the survey.

The approval is granted following an independent review of the purposes and governance arrangements for the survey.

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 determine who has responded to the survey, and to send reminders to those who have not.

Picker takes its information security responsibilities seriously and applies various precautions to ensure your information is always protected from loss, theft, or misuse.

Personal details are deleted from Picker systems 12 months after publication of results.

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.

Information on how Picker will process your data is available on their Cookies & privacy page.

NHS England’s lawful basis for carrying out the survey is covered as a ‘public task’ under Article 6(1)(e) of the UK General Data Protection Regulation (GDPR). 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’s lawful basis for using special category (health) data to carry out the data is covered under Article 9(2)(h) of the GDPR:

“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…”

The Department of Health and Social Care has confirmed that this survey has been made exempt from the National Data Opt Out. The list of exemptions and policy postponements provides more information.

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.

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

Telephone: 0300 311 22 33;

Post: NHS England, PO Box 16738, Redditch, B97 9PT.

If you have any questions or concerns, please contact NHS England.

If you have any questions relating to data protection, please contact NHS England’s Data Protection Office.

You have the right to make a complaint against NHS England regarding data protection issues with the Information Commissioner’s Office.

NHS England is committed to hearing about your experience of neonatal care. Invitations were sent to parents and carers whose babies received neonatal care within a specific time window, which is why not everyone will have been invited to take part. If you would like to give feedback but did not receive an invite, there are a number of ways by which you can do this.

Feedback can be provided through the Patient Advice and Liaison Service (PALS) or patient services manager for the NHS trust where your baby received care.

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 enables service providers and commissioners to understand how satisfied people are with the care received and what improvements are needed. It is designed to be a quick and easy way for patients, family, friends and carers to give anonymous feedback that will go directly to the staff providing your baby’s care.

Specific complaints can be made through the NHS trust where you received your care. Each NHS trust has a member of staff responsible for complaints who will try to resolve the matter with you. For more information about making a complaint to the NHS please visit: How to make a complaint to the NHS.