Charitymeans Children’s Heartbeat Trust, a registered charity.
GDPRmeans the General Data Protection Regulation.
Responsible Personmeans the CEO of Children’s Heartbeat Trust
Register of Systemsmeans a register of all systems or contexts in which personal data is processed by the Charity.


The Charity is committed to processing data in accordance with its responsibilities under the GDPR.

Article 5 of the GDPR requires that personal data shall be:

  1. processed lawfully, fairly and in a transparent manner in relation to individuals;
  2. collected for specified, explicit and legitimate purposes and not further processed in a manner that is incompatible with those purposes; further processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes shall not be considered to be incompatible with the initial purposes;
  3. adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed;
  4. accurate and, where necessary, kept up to date; every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased or rectified without delay;
  5. kept in a form which permits identification of data subjects for no longer than is necessary for the purposes for which the personal data are processed; personal data may be stored for longer periods insofar as the personal data will be processed solely for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes subject to implementation of the appropriate technical and organisational measures required by the GDPR in order to safeguard the rights and freedoms of individuals; and
  6. processed in a manner that ensures appropriate security of the personal data, including protection against unauthorised or unlawful processing and against accidental loss, destruction or damage, using appropriate technical or organisational measures.”


  1. This policy applies to all personal data processed by the Charity.
  2. The Responsible Person shall take responsibility for the Charity’s ongoing compliance with this policy.
  3. This policy shall be reviewed at least annually.
  4. The Charity shall register with the Information Commissioner’s Office as an organisation that processes personal data.


  1. To ensure its processing of data is lawful, fair and transparent, the Charity shall maintain a Register of Systems.
  2. The Register of Systems shall be reviewed at least annually.
  3. Individuals have the right to access their personal data and any such requests made to the charity shall be dealt with in a timely manner.


  1. All data processed by the Charity must be done on one of the following lawful bases: consent, contract, legal obligation, vital interests, public task or legitimate interests (see ICO guidance for more information).
  2. The Charity shall note the appropriate lawful basis in the Register of Systems.
  3. Where consent is relied upon as a lawful basis for processing data, evidence of opt-in consent shall be kept with the personal data.
  4. Where communications are sent to individuals based on their consent, the option for the individual to revoke their consent should be clearly available and systems should be in place to ensure such revocation is reflected accurately in the Charity’s systems. 


  1. The Charity shall ensure that personal data are adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed.


  1. The Charity shall take reasonable steps to ensure personal data is accurate.
  2. Where necessary for the lawful basis on which data is processed, steps shall be put in place to ensure that personal data is kept up to date.


  1. To ensure that personal data is kept for no longer than necessary, the Charity shall put in place an archiving policy for each area in which personal data is processed and review this process annually.
  2. The archiving policy shall consider what data should/must be retained, for how long, and why.


  1. The Charity shall ensure that personal data is stored securely using modern software that is kept-up-to-date. 
  2. Access to personal data shall be limited to personnel who need access and appropriate security should be in place to avoid unauthorised sharing of information.
  3. When personal data is deleted this should be done safely such that the data is irrecoverable.
  4. Appropriate back-up and disaster recovery solutions shall be in place.


In the event of a breach of security leading to the accidental or unlawful destruction, loss, alteration, unauthorised disclosure of, or access to, personal data, the Charity shall promptly assess the risk to people’s rights and freedoms and if appropriate report this breach to the ICO (more information on the ICO website).

Privacy Notice

Children’s Heartbeat Trust has been working since 1984 to provide practical, emotional and financial support to children and young people living with heart disease and their families.

If you would like to chat to us about how we use your personal information, please contact;

Chief Executive Officer
Children’s Heartbeat Trust

Howard Building
Twin Spire Centre
155 Northumberland Street
Belfast BT13 2JF
Tel: 028 9031 2228
[email protected]

We can ensure that:

We are only collecting essential personal data, in order for us to carry out tasks related to our service. This will include sensitive data relating to children.

Children’s Heartbeat Trust is the ‘data controller’ – and we will be completely open and transparent about how we use your data.

We will never sell your personal data to third parties, ever.

We only keep your data for personal information for as long as we are permitted to do so by law.

  • Service User or Family of a Service User – up to seven years from the last point of contact with the charity.
  • Campaigner, donor or fundraiser – up to seven years from last point of contact with the charity.
  • Gift Aid – Up to six years, in compliance with HMRC regulations
  • Volunteer – Up to seven years.

You can opt out of receiving communications from us at any time.

You can request to access, change, or delete your information at any time.

To safely store your information, we on occasion use Third Parties (i.e. use their services to complete a task) we will ensure your data is safely stored and disposed of after use. Third party services include:

  • CRM system (to be decided) will be used to track donations, service users and volunteers;
  • Survey Monkey – a tool to help us run surveys and evaluate services;
  • Mailchimp – a service that helps us send out emails to all our volunteers, families, supporters and patrons.
  • Professional Advisors including advocacy advisors employed by the charity.
  • Volunteers may have access to information within their voluntary roles with the charity.  Any such access will be compliant with the charity’s privacy policies.

We will protect your personal data by:

  1. Keeping it only for as long as necessary
  2. Appropriately and securely disposing of it once these time limits have passed
  3. Restricting access to this information to only those who need to use it
  4. Ensuring our security is up to date.
  5. Keeping a clean desk policy
  6. Acting upon any requests to view, change, or delete your information, within 30 days.

If you are unhappy with how we’ve handled your personal information, or a complaint you’ve made in respect of this, you have the right to contact the Information Commissioner’s Office.


Your information, or that of your child will be sent on to Children’s Heartbeat Trust, with your permission, by your nurse. We will only accept contacts that have permission from the parent/guardian to share this information with us.

The data we collect on users of our service is the following:

  • Parent Name
  • Parent Telephone
  • Parent Email
  • Parent Address
  • Service User Name
  • Service User Address
  • Service User brief Medical Information

This information is stored on Excel and used to help provide a service to the child and their family.


If you host or take part in a fundraiser on behalf of the Children’s Heartbeat Trust we may collect some information relating to your donation, to help better understand how to improve our fundraising in the future, as well as comply with some laws – especially Gift Aid.


We will not add you to our mailing list without explicit consent. At any point you can unsubscribe from the mailing list by using the links at the bottom of emails. Alternatively, you can contact Children’s Heartbeat Trust directly to ask for this information to be removed.


In order to arrange events and activities, we will hold a small amount of detail on volunteers, including: Name, Address, Email, Phone Number and their volunteering interests. We promise to never share this data with other volunteers or third parties without your permission.


You have the right to:

  • Ask us for the data we hold on you – and be provided with that information
  • Ask to amend, update or alter any inaccurate information we hold about you
  • Withdraw your consent for us to use your information, unless specified by law
  • Ask us to delete your information entirely, unless specified by law
  • Make a complaint or ask any other question in relation to your information

If you would like to do any of the above, or find out more about your rights – please contact Children’s Heartbeat Trust at:

Chief Executive Officer
Children’s Heartbeat Trust

Howard Building
Twin Spire Centre
155 Northumberland Street
Belfast BT13 2JF
Tel: 028 9031 2228
[email protected]

You can also contact the Information Commissioner’s Office if you have any query about how we are handling your data, at