About data sharing with the NHS

Why does Amaze share data with the NHS?

The Amaze ND Family Support Service is funded by the NHS, this includes Amaze NDP Family Training and Navigation Service, Parent Groups & Befriending and Amazing Futures.  To enable the NHS to monitor the service and its impact on children and young people, we are required to submit information about who is accessing our service, to the Mental Health Services Data Set (MHSDS) via NHS Digital.

If you access one of these services, we will tell you about this and direct you to this document so that you are clear what is being shared.  As Amaze want to be transparent, we give you the option to opt-out, but it is really important for Amaze to keep these services running.

If you have already chosen not to opt-out for one child and then tell us about your other child/ren with SEND you would like support around, we will assume your choice extends to them as well.

What information will you collect about me?

Parent carers

We share the following personal details about your child or young person with NHS Digital (names and full addresses are not shared):

  • postcode
  • date of birth
  • GP practice
  • gender
  • whether their gender is the same as assigned at birth
  • ethnicity
  • the main reason (primary health need) for accessing the service, such as your child’s autism or another neurodevelopmental condition

In addition, we report on the dates of any groups or one-to-one contacts you have with the service, absolutely no other details of the sessions are included.

Young people

We share the following personal details with NHS Digital (names and full addresses are not shared):

  • postcode
  • date of birth
  • GP practice
  • gender
  • whether your gender is the same as the gender assigned at birth
  • ethnicity
  • the main reason (primary health need) you are accessing Amaze

In addition, we provide details of how long you were supported by our service, when you attended a session (absolutely no information about what was discussed at these contacts is passed on) and the reason for ending support with us.

Who manages the information shared with the NHS?

The information collected about you/your young person is managed by NHS Digital, the national provider of information, data and IT systems in health and social care. The role of NHS Digital is to ensure that high quality information is used appropriately to improve patient care. It publishes key statistics and shares information to support important research and commissioning.

What is the data used for?

This is part of a national strategy called the Mental Health Services Data Set (MHSDS) which aims to deliver nationally consistent and comparable person-based information for children, young people and adults who are in contact with mental health or learning disability services. The data collected is passed to NHS Digital and supports evidence-based clinical practice and helps the NHS to demonstrate improved outcomes. It is also used to inform service improvements and monitor service performance and outcomes.

National NHS Data Opt-out

The NHS allows you to opt-out of any data they hold about you (not just for the MHSDS) being used for secondary healthcare research and planning.  If you would like to opt-out of this, please visit National Data Opt-Out – NHS England Digital.

How do I find out more?

If you have any queries about what NHS Digital does with your information or would like to know more please get in touch:

If you would like to know more about what Amaze does with your data, please read our privacy policy or contact us on [email protected].

This information was updated in February 2026