Running the survey

The purpose of collecting and analysing data via the Neonatal Care Experience Survey is to:

• Support continuous improvement by building on evidence from parents’ feedback.

• Enable local neonatal services, Operational Delivery Networks (ODNs), and commissioners to assess their performance and identify areas for improvement.

• Provide NHS England with an up-to-date overview of parents’ experiences of neonatal care across England.

• Highlight variation in care experience across trusts, ODNs, regions, and nationally, and by different groups of people e.g. by ethnicity or age.

• Ensure parents’ voices are central to decisions about how neonatal care is delivered.

There are important direct benefits for participating NHS trusts:

• Providers will gain an understanding of parents’ experiences of neonatal care, including results broken down by sub-groups (e.g. age or ethnicity).

• Providers will be able to use results to benchmark their neonatal services against other providers locally, regionally, and nationally and inform decision-making.

Noting that reporting will be provided at ODN and ICS level, with confirmation on trust‑level reporting to be given once we have a better understanding of the number of responses.

The survey will include all NHS trusts in England that provide neonatal services.

Parents of babies who received neonatal care between June 2025 and August 2025 will be invited to take part. This includes babies admitted to neonatal units for any level of care (special care, high dependency, or intensive care).

Eligibility is determined by discharge dates that fall within the defined survey window. Trusts will identify eligible mothers and babies and provide the sample to Picker, who will manage the survey process on behalf of NHS England.

The survey is adopting a census approach therefore all mothers and babies who meet the inclusion and exclusion criteria should be included in your sample.

Please email the Neonatal project team with any queries you have about the survey:

Neonatal.Survey@pickereurope.ac.uk

NHS trusts providing neonatal services are asked to follow the survey instructions provided by Picker to put together a list of eligible parents. This includes removing the details of any families whose baby has sadly died, or who do not meet the eligibility criteria.

Trusts are also asked to respond promptly to any queries Picker may have about their parent/carer list (within two working days) to avoid delays in approval.

All other survey activity such as removing duplicates, DBS checks, sending invitations and reminders, data entry, and producing reports will be carried out by Picker.

Picker will work with NHS trusts to put in place the required data security agreements.

You can use the contact us page to get in touch with Picker and they will tell you how to return the survey.

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…”

No. The Department of Health and Social Care has confirmed that the National Data Guardian Opt Out does not apply to this survey.

The list of exemptions and policy postponements provides more information.

Yes. Patients can opt out of the survey ahead of their details being shared with Picker. They can do this by responding to the fair processing notice presented by the NHS trust. NHS 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 Picker.

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 Picker’s contact details to allow them to opt out of the survey. Should patients contact the NHS trust and ask to be opted out of the survey instead, please notify Picker.

Ahead of contacting NHS trusts to share patient data for the purposes of the survey, NHS England and Picker ensure that approval under Section 251 of the NHS Act 2006 is in place. Section 251 approval allows us to carry out the survey without requiring consent. However, patients must be given the opportunity to opt out, and this is achieved via fair processing notices displayed by the NHS trust in neonatal units.

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

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 is 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 ensure that patient personal data is shared securely with Picker by following the guidance provided in the sampling handbook / guidance manual.