Julia’s House is committed to protecting your privacy and ensuring that the information we hold about you, your child, and your family is used safely, respectfully and lawfully. This privacy statement explains what information we collect, why we collect it, how it is used, and the choices you have about your information.
This notice applies to all babies, children and young people (BCYP) who receive care from Julia’s House, as well as their parents, carers and families.
1. Why we collect information about you and your child
To provide safe, effective and personalised care, we must keep records about your child’s health, care needs and the support your family receives. These records help us:
- Make safe decisions about care with you
- Ensure everyone involved in care has accurate, up‑to‑date information
- Plan, deliver and review the services your child receives
- Coordinate with other professionals supporting your child
- Keep your child safe during routine care and in emergencies
We only collect information that is necessary for these purposes.
2. What information we collect
Depending on your child’s or families needs, we may collect and store:
- Basic details (name, date of birth, address, NHS number)
- Medical history, diagnoses, allergies and care plans
- Daily care notes and records from hospice or community sessions
- Information provided by hospitals, GPs, community teams or schools
- Contact details for parents, carers and people involved in your child’s care
- Relevant family information to help us support you effectively
- Safeguarding information where required
- Copies of consents (care, communication, media, etc.)
We aim to collect information directly from you wherever possible.
3. How we use your information
Your information helps us to:
- Provide the best possible clinical and family support
- Make sure care is safe, coordinated and high‑quality
- Review and improve our services
- Train staff (using anonymised information where possible)
- Respond to concerns, compliments or complaints
- Produce anonymised statistics and reports
- Meet legal obligations (for example, safeguarding or infection control)
Although your information is not normally used for marketing purpose, if you have engaged with us in some fundraising capacity, such as making a direct donation or playing our lottery, marketing materials may be sent to you under the terms of legitimate interest. You can always opt out by contacting our fundraising office on 01202 644220 or email info@juliashouse.org.
4. Who we share information with
We only share information when it is necessary for your child’s care or when we are legally required to do so. Organisations we may share information with include:
Health and care partners
- NHS hospitals and community teams
- Relevant GP practices
- Ambulance and emergency services
- Specialist health providers
- Social care, education and public health teams (with consent)
- Other charities or voluntary organisations directly supporting your child
- NHS Digital or equivalent bodies involved in national reporting
Legal or safeguarding requirements
We may share information without consent only if:
- There is a serious risk of harm to your child or someone else
- We are required to share information to prevent a public health risk
- A court orders us to disclose information
- There is another specific legal requirement
We will always share the minimum information necessary and record our reasons for doing so.
5. How your information is stored
We use secure systems to store and manage your information, including:
- SystmOne, the clinical electronic record used across Julia’s House
- Encrypted electronic communication where needed
- Secure shared care systems, where relevant, to support coordination with partners
- Password‑protected and access‑controlled systems for all digital information
- Secure handling procedures for any physical documents
Only authorised staff who need information to provide care or carry out essential duties can access your records.
6. Your rights
Under UK GDPR and the Data Protection Act 2018, you have the right to:
Access your information
You can request a copy of the information we hold about you or your child.
We will respond within one month, free of charge (unless the request is repetitive or excessive).
Request corrections
If information is wrong or incomplete, you can ask us to put it right.
Ask us to stop sharing information
You can request that we do not share your information with other organisations.
We will explain any implications for your child’s care before making changes.
Withdraw consent
Where consent is required (for example, media or communication consent), you can withdraw it at any time.
Raise concerns
You can ask how your information is being used or raise a concern using the contact details below.
7. How long we keep your information
We keep information only for as long as is necessary, following:
- Legal and regulatory requirements
- NHS and charity sector retention standards
- Our internal Information Governance policies
When information is no longer needed, we dispose of it securely.
8. How to contact us
Data Protection Officer – Julia’s House
Chief Clinical Information Officer – Julia’s House
info@juliashouse.org
01202 644220
www.juliashouse.org/contact-us
If you remain unhappy, you can contact the Information Commissioner’s Office (ICO) at www.ico.org.uk.
9. Updates to this notice
We review this privacy statement regularly.
Any significant changes will be published on our website and communicated to families where needed.
