What is the purpose of this document?

Owen McVeigh is committed to protecting the privacy and security of personal information.

This privacy notice describes how we collect and use personal information about you and your child during and after your relationship with us, in accordance with the General Data Protection Regulation (GDPR) and the Data Protection Act 2018.

It applies to all individuals for whom we collect/process personal information, including volunteers, supporters, fundraiser and service users.

Owen McVeigh Foundation is a “data controller”. This means that we are responsible for deciding how we hold and use personal information about you and your child. We are registered with the Information Commissioner’s Office and our registration number is ZA505404.

We are required under data protection legislation to notify you of the information contained in this privacy notice.

It is important that you read this notice, together with any other privacy notice we may provide on specific occasions when we are collecting or processing personal information about you and your child, so that you are aware of how and why we are using such information.

Data protection principles

We will comply with data protection law. This says that the personal information we hold about you and your child must be:

  1. Used lawfully, fairly and in a transparent way.
  2. Collected only for valid purposes that we have clearly explained to you and not used in any way that is incompatible with those purposes.
  3. Relevant to the purposes we have told you about and limited only to those purposes.
  4. Accurate and kept up to date.
  5. Kept only as long as necessary for the purposes we have told you about.
  6. Kept securely.

An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.

The kind of information we may hold about you and your child

Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data).

Depending on the circumstances, we may collect, store, and use the following categories of personal information about you or your child:

  • Name
  • Title
  • Addresses
  • Telephone numbers
  • Email addresses
  • T-shirt size
  • Alder Hey Number
  • Personal information you provide in our visitors book at our lodge
  • Any other information obtained through electronic means such as telephone recordings, emails and social media accounts

How may your personal information be collected?

We may collect personal information about individuals in a number of different ways such as on sponsorship or registration forms, corresponding with us via post, phone, email or otherwise by any direct interactions between us or you voluntary providing that information to us.

We may also collect personal data which is publicly available on websites.


How we may use information about you

We will only use your personal information when the law allows us to. Most commonly, we may use your personal information in the following circumstances:

  1. For identification purposes
  2. For verification purposes
  3. For contacting you
  4. For Gift Aid purposes
  5. To facilitate fundraising events
  6. To assist in volunteering
  7. To promote the charity
  8. Where we need to comply with a legal obligation
  9. Where it is necessary for our legitimate interests to provide services to you
  10. Sharing your story (see below)
  11. Support for families (see below)

We may also use your personal information in the following situations, which are likely to be rare:

  1. Where it is necessary to protect the vital interests of you or another person.
  2. Where it is needed in the public interest or for official purposes.


Sharing your story

You may also choose to tell us about your experiences in our lodge or share life memories.  This may include sharing Identity, Contact or other Special Category Data, or information relating to your health and family life. If we have your explicit and informed consent (from our consent form), or your parent or guardian’s explicit and informed consent if you are under 16, this information may be made public by us at events and in materials and communications promoting our campaigning and fundraising work or in documents such as our annual report. Where your explicit and informed consent is given, we may share your information so we can promote Owen McVeigh Foundation on the or social media pages.

Support for families

We provide support to individuals and families with children receiving treatment in specialist children’s hospitals, and collect Identity, Contact and other Special Category personal data or information relating to your health and family life, in order to provide those services.

If you fail to provide personal information

If you fail to provide certain information when requested, we may not be able to make contact with you or provide any services with you or we may be prevented from complying with our legal obligations.

Change of purpose

We will only use your personal information for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. If we need to use your personal information for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to do so.

We may process your personal information without your knowledge or consent where this is required or permitted by law.

Automated decision-making

You will not be subject to decisions which have a significant impact on you based solely on automated decision-making, unless we have a lawful basis for doing so and we have notified you.

Data sharing

In the event we need to share your data with third parties we require third parties to respect the security of your data and to treat it in accordance with the law.

Why might you share my personal information with third parties?

We may share your personal information with third parties where required by law, where it is necessary to administer the relationship with you or where we have another legitimate interest in doing so.

Which third-party service providers may process my personal information?

“Third parties” includes third-party service and support providers such as for administration of the charity and events, IT services, accountancy services and HMRC.

How secure is my information with third-party service providers?

All our third-party service providers are required to take appropriate security measures to protect your personal information in line with our policies. We do not allow our third-party service providers to use your personal data for their own purposes. We only permit them to process your personal data for specified purposes and in accordance with our instructions.

What about other third parties?

We may share your personal information with other third parties, for example in the context of the possible restructuring of the charity. We may also need to share your personal information with a regulator or to otherwise comply with the law.

Data security

We have put in place appropriate security measures to prevent your personal information from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal information to those who have a need to know. They may only process your personal information on our instructions and they are subject to a duty of confidentiality.

We have put in place procedures to deal with any suspected data security breach and will notify you and any applicable regulator of a suspected breach where we are legally required to do so.

Data retention

How long will you use my information for?

We will only retain your personal information for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements. To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

In some circumstances we may anonymise your personal information so that it can no longer be associated with you, in which case we may use such information without further notice to you.

We normally keep personal data for a period of 12 months from any last contact with you or as long as is necessary to provide support to you, your child and any family members requiring our support.

Rights of access, correction, erasure, and restriction

Your duty to inform us of changes

It is important that the personal information we hold about you is accurate and current. Please keep us informed if your personal information changes during your relationship with us.

Your rights in connection with personal information

Under certain circumstances, by law you have the right to:

  • Request access to your personal information (commonly known as a “data subject access request”). This enables you to receive a copy of the personal information we hold about you and to check that we are lawfully processing it.
  • Request correction of the personal information that we hold about you. This enables you to have any incomplete or inaccurate information we hold about you corrected.
  • Request erasure of your personal information. This enables you to ask us to delete or remove personal information where there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your personal information where you have exercised your right to object to processing (see below).
  • Object to processing of your personal information where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground. You also have the right to object where we are processing your personal information for direct marketing purposes.
  • Request the restriction of processing of your personal information. This enables you to ask us to suspend the processing of personal information about you, for example if you want us to establish its accuracy or the reason for processing it.
  • Request the transfer of your personal information to another party.

If you want to review, verify, correct or request erasure of your personal information, object to the processing of your personal data, or request that we transfer a copy of your personal information to another party, please write to us at the address below.

No fee usually required

You will not have to pay a fee to access your personal information (or to exercise any of the other rights). However, we may charge a reasonable fee if your request for access is clearly unfounded or excessive. Alternatively, we may refuse to comply with the request in such circumstances.

What we may need from you

We may need to request specific information from you to help us confirm your identity and ensure your right to access the information (or to exercise any of your other rights). This is another appropriate security measure to ensure that personal information is not disclosed to any person who has no right to receive it.

Right to withdraw consent

In the limited circumstances where you may have provided your consent to the collection, processing and transfer of your personal information for a specific purpose, you have the right to withdraw your consent for that specific processing at any time. To withdraw your consent, please write to us at the address below. Once we have received notification that you have withdrawn your consent, we will no longer process your information for the purpose or purposes you originally agreed to, unless we have another legitimate basis for doing so in law.

Data Protection Administrator

Sean McCaldon has been nominated by the Owen McVeigh Foundation to oversee compliance with data protection laws and this privacy notice. If you have any questions about this privacy notice or how we handle your personal information, please contact by email [email protected]. You have the right to make a complaint at any time to the Information Commissioner’s Office (ICO), the UK supervisory authority for data protection issues.

Address for Exercising Your Rights

If you wish to exercise any of your rights listed above or wish to raise any data protection issues please write to:-

Owen Mcveigh Foundation
18 Lapwing Close
L12 0PW

and mark it for the attention of the Data Protection Administrator.

Changes to this privacy notice

We reserve the right to update this privacy notice at any time, and we will provide you with a new privacy notice when we make any substantial updates. We may also notify you in other ways from time to time about the processing of your personal information. If you have any questions about this data protection / privacy notice, please contact us at [email protected].