Demelza provides short breaks, practical and emotional support, creative therapies, and care towards the end of life for children and young people with serious or life-limiting conditions, and their families.


We understand that our care may apply to more than one child in a family, and also the support of the wider family, so for the context of this policy, each child will have their own ‘Record’ and each member of the wider family we offer support to, including siblings, will have their own ‘Record’

We receive information about your child from your child, you, your family and from other people involved their care (e.g. GP, hospital doctors and nurses). We use this information to keep records about their care (Records).

These Records are stored electronically or on paper and may include:

  • personal details like their name, address, date of birth, parent/guardian, legal representative
  • contacts we have with you like appointments and telephone calls
  • notes and reports about their health, treatment and care
  • results of x-rays and laboratory tests
  • relevant information from people who care for them or know them well
  • things we are told about wishes and preferences.

It is important that all necessary teams at Demelza have access to up to date and accurate Records about your child. This helps us ensure that they receive the best possible care. It also means that your concerns can be investigated properly if you have a complaint about your child’s care.


The data we will process is of a high risk (referred to as Special Category data within Data Protection Legislation) and we rely upon the following legal basis to process this data:


  • Consent – where necessary we will seek your or your parent / guardians’ explicit consent to use the data
  • Legal permitted exemptions as per GDPR article 9 and Data Protection Act 2018 Schedule 1. For example, where the data processed is necessary for the:
    • purposes of carrying out the obligations in the field of social security and social protection law GDPR article 9,2 (b); or
    • purposes necessary to protect the vital interests of the data subject GDPR article 9,2 (c); or
    • purposes of preventive or occupational medicine, medical diagnosis, the provision of health or social care or treatment GDPR article 9,2 (h)
  • Legitimate interest – where the processing is of interest or beneficial to you in the services we provide
  • Legal requirement – as a hospice and care provider, data must be processed to fulfil our legal safeguarding and care requirements
  • Performance of services – and for some areas of processing it will be as part of your agreement with us for the care provided.

Members of the Demelza team looking after your child may share relevant information from their Records with each other. This team may include doctors, nurses, therapists, pharmacists, administration staff and people providing emotional and practical family support. It may also include students or trainees in medicine or health and social care who are working with our team.

Often it is necessary to share relevant information from your child’s Records with health or social care professionals in other organisations who are directly involved in their care. Such professionals may include GPs or district nurses, hospital teams, ambulance staff or social care services.

In these circumstances, we only share relevant information from their Records for medical purposes and if these people have a genuine need for it, or if we are under a legal obligation to do so. If you give us any specific instructions not to share their Records in this way, we will respect this to the extent we are not prohibited from doing so by any legal obligation, although this may affect your child’s care. If it affects care, we will let you know.

Your child’s Records help us to review the care we provide and to make sure that it is of the highest possible standard. This includes routine audits of our care or investigating and responding to complaints, incidents or near misses. Our regulatory body, the Care Quality Commission (CQC), or NHS organisations who commission services from us, may also ask to view relevant information from these Records and/or seek feedback from you about the service we provide. We may also share information with local organisations, or commissioners, to gain commissioned care funding, which Demelza is not currently accessing.

If you don’t want us to share relevant information from your child’s Records with these organisations or you don’t want to provide feedback, they will respect your wishes where it is possible to carry out their checks without looking at relevant information from Records and/or contacting you for feedback.

Some relevant information in your child’s Records may also be shared with other professionals or other organisations. This might be to help teach health or social care professionals, to provide statistical information to national organisations with interests in health care or health care research. When relevant information from your child’s Records are shared in this way, we remove or disguise any personal or identifiable information about you wherever possible. Your wishes will be respected, and if you do not want us to share your child’s Records in this way it will not affect their care.

Occasionally, we are required by law to share Records and may therefore be prevented from respecting your wishes not to share these Records. This includes when:

  • our regulator, the CQC, is carrying out an audit
  • we find an infectious disease (like meningitis or measles) which may put others in danger
  • a formal court order has been made
  • other organisations like the police or social services need it to prevent serious crime or where there is a child or adult at risk of abuse or neglect.

We take our obligations to keep your child’s Records safe very seriously. Everyone working for us, or who has received their Records from us, has a legal duty to keep Records confidential. They are monitored by the Caldicott Guardian, a senior clinician responsible for ensuring that people’s rights to confidentiality are respected.


The retention of these records is mostly governed by legal requirements. For specific details of our Retention Policy please contact

Liz Bray

Liz Bray, Director of Quality Improvement and Clinical Governance

01795 845200

Demelza Hospice Care for Children, Demelza House, Rook Lane, Bobbing, Sittingbourne, Kent, ME9 8DZ.