If you wish to make a Subject Access Request, please click here for a step-by-step guide.
If you wish to request that we erase your data (the "Right to be Forgotten"), please click here for a step-by-step guide.
If you wish to make a request that we restrict the processing of your data, please click here for a step-by-step guide. 
*Please note that completion of the above forms is not compulsory, and you can exercise your rights in whichever way you feel happy with. It does, however, help us with fulfilling your request by ensuring that the information we need is supplied.

Data Protection Privacy Notice (Clinical)

Forget Me Not Children’s Hospice is committed to protecting and respecting your privacy, and the privacy of the children and families that we care for.

This policy tells you what information we collect, what we do with it, how we will keep it secure and who it might be shared with. For the purposes of clarity, this policy is written within the context that it is read by the parent/guardian of a child receiving care from us.

We offer a wide range of services, and this policy applies when you:

  • Seek care, support or assistance from us (including when you make a referral);
  • Speak to, or enquire, with our care team, which includes our care administrators and family support team;
  • Provide us with personal information relating to a clinical admission, including sensitive information about your physical or mental health (including that of the child).

If you are looking for privacy information for when you support or donate to us, use or website, contact us about a non-clinical matter, or buy something in our shops or online, please read our non-clinical Privacy Policy. This can be found on the website by clicking ‘Privacy Policy’ at the bottom of the page, or by contacting us using the details below.

Who are we?

Forget Me Not Children’s Hospice supports children with life-shortening conditions and their families across West Yorkshire and North Manchester. Forget Me Not Children’s Hospice is a registered charity (no. 1110457). The registered address is Forget Me Not Children’s Hospice, Russell House, Fell Greave Road, Huddersfield, HD2 1NH.

We are the Data Controller, which means we decide how, when and why personal data of you and the child will be used. This is explained in more detail later in this policy.

If you have any questions, please contact us by:

  • Emailing: dataprotection@forgetmenotchild.co.uk
  • Telephoning: 01484 411040
  • Writing to us: Forget Me Not Children’s Hospice, Russell House, Fell Greave Road, Huddersfield, HD2 1NH

How and why do we collect information from you?

The care and services that we offer may apply to more than one child in a family, and we may also support the wider family (for example parents). In the context of this policy, each child has their own clinical record, and this record also contains details of any support we provide to the wider family, including siblings.

We gather information about you and the child from yourself, the child, family members and any other people involved in their care. This includes consultants, GPs, care professionals and social workers.  When seeking support from us, the information is initially collected from the referral form which is completed by the person making the referral (for example a parent). On an ongoing basis, you provide this information to us through discussions and appointments that you have with our care and family support teams, and further information on keeping information accurate and up-to-date can be found later in this policy.

We use this information to allow us to deliver, direct and manage care of the child, and provide support for the wider family. This includes ensuring that:

  • Those involved in the care of the child (including doctors, nurses and care staff) have access to accurate and up-to-date information to assess the health of the child and provide the most appropriate care;
  • We can work well with other organisations that may be involved with the care of the child;
  • Our Family Support teams have access to the information needed to ensure the support we provide to your family is suitable; and
  • Any concerns can be properly investigated.

What type of information do we collect?

The personal information we collect includes:

  • Personal details of the child (including name, address, date of birth, NHS number, language and school information, along with parent/guardian or legal representative details);
  • Information about the child’s care, including appointments and telephone calls, along with details of any professionals involved in the child’s care (such as GP’s and Consultants);
  • Notes and reports about the child’s medical health, diagnosis and treatment, including any allergies;
  • Results of x-rays, scans and laboratory tests;
  • Contact details of the person referring the child to our services (such as the relationship or job title of the referrer); and
  • Any relevant information from people who cares for, or knows the child well (for example meal choices, wishes and preferences).

The nature of our service means we collect sensitive (special category) information, which includes information on the child’s health and ethnic group. Where we collect this information, we will treat it with extra care and only for the purpose we tell you about, and will only do so where we have received explicit consent. Likewise, this information will always be processed in accordance with this Privacy Policy, and all information will be kept secure, and held for no longer than necessary.

As an organisation, we adhere to the Records Management Code of Practice for Health and Social Care 2016, which shows how to effectively manage medical records, and sets legal and professional best practice. For further information on the code of practice, please visit: https://www.gov.uk/government/publications/records-management-code-of-practice-for-health-and-social-care

We retain these records in accordance with the NHS Records Retention Schedule, which sets out the appropriate length of time each type of record should be retained. We will never keep records for longer than necessary, and will always ensure that all records are destroyed confidentially once their retention period has been met and the decision made that the records are no longer required.

If you agreed to it, we collect your e-mail address to allow us to send you information on upcoming family events that you may be interested in. You can opt-out at any time by e-mailing dataprotection@forgetmenotchild.co.uk, or by writing to us using the address at the top of this page.

When you visit our hospice, footage may be recorded on our CCTV system for the purposes of crime prevention and public safety.

The legal basis for processing information

The legal basis that we rely on for processing information will depend on the circumstances in which it is being collected and used. You can ask us which lawful basis applies to each processing activity, however we have included a description and examples of the different lawful reasons that we rely on below:

  • Where you have provided your consent for us to use the data in the way that we have explained. Please note: In order for us to process sensitive information (such as health information), we seek explicit consent, which provides you with an opportunity to choose whether you agree to us processing this type of information. This is done on the form you complete when signing up to our services, and we break down each processing activity to give you a real choice into whether you wish us to process information in this way.
  • Where we need to process your information to carry out our legal obligations, such as responding to information requests from our regulators (including the Care Quality Commission).
  • We may need to process information for the purposes of fulfilling our legitimate interests. Broadly speaking, legitimate interests means we may process your personal information where we have a genuine and legitimate reason, and are not harming any of your rights or interests. When we process your information for our legitimate interests, we will always consider and balance any potential impact on your rights. As such, we will never use information for activities where our interests are overridden by the impact on you.
  • We may also need to process information for the performance of a contract between you and ourselves.

Who has access to this information, and is it shared with other professionals?

Our staff and clinical support clerks have access to this information, and may share and discuss relevant information about you or the child with each other. This includes our nurses, doctors, therapists, administrators and family support teams. This is to allow us to provide the best care and support to the child and wider family. On occasions, this information may include health and social care students or trainees who are working in our team.

We often need to share relevant information about the child’s medical records with health or social care professionals in other settings who are directly involved in their care. For example, we may need to share information with GP’s, hospital teams, ambulance staff or social care services. Where we do this, it will only be for medical and care purposes, and where they have a genuine need for it (or if we are under a legal obligation to do so). You have the choice into whether you wish us to share information in this way, and we will respect this. However, please note that we can only do this where we are not prohibited from doing so by any legal obligation, and this may affect the child’s care (although we will discuss this with you if this applies). Likewise, sometimes disclosure may be justified in the public interest, with this decision made by the Director of Care.

We may also need to share information about you and/or the child with our regulatory body (the Care Quality Commission) or NHS organisations who commission services from us. This may be to carry out audits of our care, respond to complaints, incidents or near-misses, or seek feedback from you about the services we offer. We may also share this information with local organisations or commissioners to gain commissioned care funding. However, if you do not want us to share this information, we will respect this decision and the organisation seeking it will aim (where possible) to carry out their checks without looking at this information.

Sometimes, we are required by law to share records, and this may mean we are unable to respect your wish not to share the records. Examples include if a formal court order has been made, or we find an infectious disease that may put others in danger, or if other organisations (i.e. the police/social services) need it to prevent serious crime or where a child is at risk of abuse or neglect.

Some non-identifiable information (meaning we have anonymised the data) may be shared with other professionals or relevant organisations. This may be for statistical or research purposes, and to help support the teaching of health or social care professionals. Again, if you would rather that we didn’t share information in this way, we will fully respect this.


When the child is referred to us, we ask for consent to allow us to contact the professionals involved in the child’s care (typically the GP and consultant paediatrician). This consent will authorise us to gather this information, which in turn allows us to ensure we are providing the best care and support possible. We will also ask for consent to share information that we have recorded here (such as if we have made any clinical observations) with other organisations involved in the care of the child. Whilst we will always endeavour to care for children and families who choose not to give consent, the range of services that we offer may become more limited (for example we may be unable to safely make clinical decisions), so we will inform you if decisions about consent have implications for the provision of care or treatment.

 If, at any time, you wish to withdraw this consent, please contact Sharon Burton (Director of Care) by e-mailing sharon.burton@forgetmenotchild.co.uk, or by writing to Sharon Burton, Forget Me Not Children’s Hospice, Fell Greave Road, Huddersfield HD2 1NH.

Please note that where the legal basis for processing information relies on a statutory law, duty or power, the right to withdraw consent may not be possible (such as if we legally have to transmit information for legal purposes).

Accessing and updating information, or finding out more

The accuracy of your information, and information of the child, is important to us. If you need to correct any information that we hold, please contact us using the details at the top of this page. We will always complete assessments, plans and records in conjunction with you where possible. Therefore, it is important to keep these records up to date when requested by the care team, which in turn helps us ensure that we have accurate plans in accordance with you and the child’s wishes.

We can also tell you what information we hold about you or the child, and how it is processed. To do this, please complete a Subject Access Request form, which can be found by visiting our website or emailing us at dataprotection@forgetmenotchild.co.uk.

You can also ask us about how we use or handle information about you or the child, including:

  • How we have decided how, why and when we process personal information;
  • What categories of personal data we collect, store and process, including the purpose and legal basis for this processing;
  • If we intend to transfer the personal data to a country outside of the European Economic Area, information about how we ensure this is done securely;
  • How long we will store this data.

Photographs and films of children in our care

We may, from time-to-time, photograph or video film children in our care and use these for publicity purposes. However, we will always obtain consent from the parent/guardian before we do this, and they have the right to request that we stop processing this information at any time.

Your rights

You have the right to object to processing that we may carry out. This includes requesting that we stop, erase or restrict the processing of information about you or the child. You can do this by writing, e-mailing or telephoning us using the details provided at the top of this page. However, please bear in mind that this may affect our ability to carry out care or support, and we may be prevented from actioning your request in certain circumstances (for example if we are lawfully required to retain the information). Where this occurs, we will inform you in writing.

You also have the right to request that data is provided electronically to allow transfer to another organisation (Data Portability).

How we protect information

When you give us personal information, we take steps to ensure that it’s treated securely. All those involved with the child’s care undergo strict Information Governance training, and all those working or supporting us has a legal duty to keep records confidential. Our Caldicott Guardian (Sharon Burton, Director of Care) who is the senior clinician responsible for ensuring that rights to confidentiality are respected, can be contacted by the following methods:

Sharon Burton, Caldicott Guardian

Making a complaint

You have the right to make a complaint about how we (or any third parties) use personal data of you or the child. As a local charity, we encourage people to come forward with any suggestions and queries, and welcome people challenging us if they feel that the use of information is unfair, misleading or inappropriate. You can contact us by using the details at the top of this policy.

You also have the right to make a complaint directly to the supervisory authority, which is the ICO. They can be contacted by telephone on 0303 123 1113. Alternatively, please visit their website: https://ico.org.uk/concerns

Reviewing this policy

We regularly review this policy to ensure it reflects how we use and handle information, and it was last updated in November 2018. We may, from time to time, change this policy, however we will inform you of any changes to how we use personal information.