Specialists in palliative care

Privacy Notice

Using Your Information

Who we are

St John’s Hospice is a charity that provides palliative and end of life care in North Lancashire, South Lakes and parts of North Yorkshire

We raise funds through donations, gifts in Wills, the St John’s Hospice Lottery and other activities supported by our local community. Funds are also raised from the sale of donated goods in our charity shops, the Courtyard Gift Shop and the Courtyard Café. In addition, a funding contribution is made by the NHS.

St John's Hospice North Lancashire and South Lakes is a charitable incorporated organisation registered in England with charity number 1157030

Within the context of this notice, ‘we’ means both the charity and its subsidiaries. Each of these organisations are data controllers under data protection regulations.

Under data protection regulations, we are required to appoint a Data Protection Officer who ensures your information is handled securely at all times and in accordance with the law we have a Data Protection Officer.

Should you wish to contact us about the way we use your information, you can contact St John’s Hospice on tel: 01524 382538, by email at  [email protected] or by post at: St John’s Hospice, Slyne Road, Lancaster, LA2 6ST

What information do we collect and how do we use it?

Personal information is any information that can be used to identify you, such as a name, address, telephone number, email address, or more rarely – bank account details, NHS number, and even electronic identifiers such as your internet protocol (IP) address. The amount of information we collect and use about you will vary depending on your relationship to the hospice. We always make sure there is a legal basis in data protection law before we start collecting and using your information. The main legal bases we rely on are:

  1. Consent - Where you have given us clear and informed permission
  2. Contractual - Where there is a contract between you and us
  3. Legal obligation - Where a law says we have to
  4. Legitimate interests - Where it is necessary for our charitable aims and the benefits have been carefully balanced against respect for your privacy, your information rights and your expectations
  5. Vital interests - Where we need to process your personal data to protect you and where you may not be capable of agreeing to the processing.

When processing your sensitive (special category) personal data we will only do so in the following circumstances:

  1. Where explicit consent has been given
  2. To protect the vital interests of an individual
  3. For the defence of legal claims
  4. For reasons of substantial public interest
  5. Where the processing is necessary for the delivery of care

Patients and hospice service users

If you are a patient accessing care services, we collect information about your health and wellbeing in order to manage your care needs. This may include details about your diagnosis, medical history, medication, test results and notes from other care providers about the care and support you are currently receiving or care you have received in the past. This information is usually provided to us by other care providers who have referred you to our services. When you begin accessing our services, we check this information with you to make sure it is accurate, and we ask your permission to continue sharing your health information with other care providers into the future, so that everyone involved in your holistic (wrap around) care has accurate details about you. The types of care providers we normally share with include for example GPs, hospitals, community nursing services, counsellors, therapists, hospice social workers etc. We may also need to share some of your details with local health and social care partners, such as Integrated Care Systems and Local Authorities to support planning of local health and social care services and funding. Where possible, information shared with these partners will be anonymised or pseudonymised to protect your privacy.

Patients’ Families

If you are a relative of a patient accessing support services, we collect information about your health and wellbeing in order to manage your support needs. This may include details about your emotional wellbeing, mental health, family circumstances and welfare entitlements. We will only collect this information from you directly, and we won’t share it with anyone unless you give us your permission.

We collect your health information only where you have consented to this for the delivery of care.  Using this information enables us to deliver the best possible care to you and your loved ones, and improve our services going forward. You have the right to object to us collecting and using this information, however it may not be possible to continue providing care and support services to you and your family without it.

We recognise your health information is sensitive and we take great care to keep it secure. Only those who need to use your information to deliver effective and high-quality care are allowed access to it. This will include clinicians such as nurses, doctors, therapists and officers, but also non-clinicians such as administrators, auditors and data analysts. When sharing your information with other care providers, we make sure the recipient needs that information for care purposes before doing so, and only send it using secure channels.

Donors, supporters and customers - using your information for marketing:

Headline Information

Marketing information may include information from St John’s Hospice, St John’s Hospice Shops and the Courtyard Cafe about the goods and services sold, fundraising appeals by St John’s Hospice, and information about work in the Hospice and in the community.

We may send you communications about our news, activities and appeals by post or phone unless you have previously told us that you do not want to be contacted in this way. At the point we obtain donor, supporter and customer details we advise people that their information would be used for marketing and give people the opportunity to ‘opt out’. Because of this, we rely on legitimate interest for this processing as we believe St John’s Hospice has a legitimate interest in promoting our charitable work and therefore the fundraising which funds this work.

We have a consent-only communication policy. Where you have consented, we may send you information about our fundraising campaigns and activities and ways in which you can support us. These messages may be by email, SMS or phone depending on your communication preferences. We may also contact you by post unless you have asked us not to. You can change your preferences at any time by either clicking on the unsubscribe link in the electronic messages or by contacting us using the detail in this notice.

If you do not wish to be contacted by mail and telephone you need to ‘opt out’.

You can unsubscribe from our communications at any time by use the unsubscribe form on our website or the unsubscribe link on our marketing communications to withdraw your consent.

You can also add, amend, or remove your marketing preferences at any time by:

  • clicking the unsubscribe option at the bottom of all marketing emails
  • calling our Supporter Care Team on weekdays, 9am–4pm on 01524 382538

If you ask us to stop sending marketing information, we will update your record and do so as quickly as we can but please note that occasionally you may receive further mailings that were already in progress.

The Detail

If you donate money or goods to us or participate in fundraising or publicity activities in our aid, we collect administrative information about the support you have provided to us. This may include contact details, payment history (including bank details in some cases), communication history, event participation details, pledges you have made and publicity photos or case studies you have provided. This information is always given to us by you, either directly or indirectly (with your permission) via online giving services e.g. Just Giving.

If we work with you to produce specific patient and family case studies, patient stories and photos these are generally shared by you via email, in person, social media channels, telephone, SMS, WhatsApp and/or in person, for your approval. If you choose to support us in this way by getting involved in publicity work, we collect your photographs and case studies using a consent form or written or verbal approval. These patient and family stories help the community understand what hospice care really is, helps us communicate our charitable aims to the public, and therefore build support. You can withdraw your consent for your photographs, film clips in which you feature or case studies to be used at any time by contacting [email protected].

We may share your personal contact data (but not publicity information without your additional consent) with companies who support us in our fundraising activities, such as mailing houses who are acting on our behalf to circulate our publicity materials. We will never sell your information.

We will process your payment card details if you choose to donate to us or pay for something in our shops by credit card or debit card. Your payment card details are only used for the immediate payment being made; the details are erased from any paperwork immediately afterwards. Only trained staff and volunteers are allowed to handle your payment card details.

We may ask you if you wish to register for Gift Aid as a way of increasing the value of your donation, at no cost to you. This can apply to either the monetary sales value of a stock donation, or a straightforward monetary donation. These are managed through two separate Gift Aid systems. For your Gift Aid registrations to be valid, we will require your name and address details. Information from Gift Aid forms is only ever shared with HM Revenue and Customs.

We collect your fundraising information on the basis of legitimate interests and consent. Using this information enables us to build a lasting relationship with you and the community at large and make financial forecasts to assist with care planning. You have the right to object to us collecting this information or restricting the way we use it, although this may limit the amount of any fundraising you are able to do for us.

If you would prefer us not to use your data in this way, please email us at [email protected] or call the Supporter Care Team on 01524 382538

We like to keep our donors and supporters updated with news about the charity and upcoming events. If you would rather not receive marketing information from us, you can let us know at any time, either by contacting the Supporter Care Team on 01524 382538 or [email protected].  You can also register your communication preferences with the national Fundraising Preference Service. We will give you the opportunity to update your communication preferences whenever we send you marketing by email or post, or whenever we speak to you on the telephone about donating.


St John’s Hospice carries out research to help us to understand more about patient and family requirements, income generation opportunities (because we are a charity) and learn more about our community and individuals to assist with future planning. This also helps the Hospice to focus any conversations we have with you about fundraising and volunteering, in the most effective way and ensure that we provide you with an experience as a donor or potential donor, which is appropriate for you.

Occasionally we engage specialist research agencies to support our research e.g. FlexMR and Lancaster University.

Invitations to take part in research may be sent to you via email.

Information about business associates and partners

If you are a company who has a business relationship with us, we collect administrative information about your representatives, plus your payment details and history. This may include contact information, communication history and bank details. This information is always provided by you directly. We do not share your information with anyone externally, except our external financial auditors who may need to look at payment histories to carry out their regulatory audit.

We collect your information on the basis of purchase agreements, which are a type of contract. Using this information ensures the goods and services we are buying from you, or selling to you, are delivered in the agreed way and paid as required. You do not have the right to object to us collecting this information, or restricting how it is used, because you have already agreed to us having and using it as part of the purchase agreement.

Keeping your information secure

We take the security of your personal information very seriously. All staff and volunteers who handle personal information are required to complete training on information security once per year at a minimum. We also carry out regular audits and inspections to make sure our security controls are effective and reliable. Within the organisation, access to information is controlled, so that no one can use personal information unless they have a business reason to do so. If information needs to be taken outside our premises, we take extra precautions to keep it as safe as we can. When information is no longer required, it is archived or securely destroyed in accordance with the law.

Responsibilities and accountabilities for information security are clearly defined. We have a Data Protection Officer responsible for compliance with data protection regulations. We have a Caldicott Guardian who is responsible for protecting people’s confidentiality, in accordance with NHS information sharing rules. Our Caldicott Guardian is Maddy Bass, Director of Nursing and Quality. We also have a Senior Information Risk Owner (SIRO) who is responsible for promoting and raising awareness of information governance issues. Our SIRO is Vicki Askham, Director of Finance and Resources. We also have a Clinical Governance Lead, who is Roz McMeeking, Associate Director of Clinical Governance & Improvement.

We value transparency and improvement. If we think your personal information may have been misused, we will investigate the incident and let you know about it. In the most severe cases, we may also notify regulatory bodies such as the Information Commissioner’s Office or the Care Quality Commission, as required by law. As a regulated healthcare provider, we have a Duty of Candour to inform you about mistakes, apologise for them, and support you while we work to resolve them.

Sharing your information

Where we have indicated above that information may be shared, we always ensure the people receiving your information uphold the same information security standards as we do. This will often be specified in writing as part of a contract or information sharing agreement. All staff, volunteers and agents of St John’s Hospice are bound by strict duties of confidentiality.

In rare circumstances, we may be obliged to share your information without forewarning. For example, if we believe you may be at risk of harm or there is a public health risk, we may have a legal or professional duty to share information about you with the authorities. In all such cases, the sharing will be reviewed by our Caldicott Guardian and will only happen if they believe it is absolutely necessary.

Keeping your health information

We only keep your information as long as is necessary for the purpose it was collected for. Depending on the details, your information could be used and securely disposed of very quickly, or it could be necessary for us to keep your information for many years to comply with archiving or insurance requirements. The Hospice adheres to the detailed retention schedule in Appendix 3 of the Records Management Code of Practice for Health and Social Care 2016 via the following link https://digital.nhs.uk/codes-of-practice-handling-information

A third party may be involved in the storage or destruction of your records. For example, we may use a company to digitise paper records so they can be retained more securely and easily, or we may use a company to bring shredding equipment to the hospice for secure disposal of paper records in bulk. Whenever we use a third party, the companies are vetted and are bound by contracts containing strict confidentiality and data protection requirements.

However long we need to keep information, we ensure that only the minimum amount of data required will be kept.

Your individual rights

Under data protection regulations, you have rights over how your personal information is used by others.

Your other legal rights

Data protection legislation also provides you with certain other rights. These are not always absolute rights and must be considered in the wider scope of the legislation. These rights are:

  • right to erasure, also known as the right to be forgotten. The broad principle underpinning this right is to enable an individual to request the deletion or removal of personal data where there is no compelling reason for its continued processing. In some circumstances this is not an absolute right;
  • right to restrict processing. You have the right to ‘block’ or suppress processing of personal data. Again, this is not an absolute right and will depend on the circumstances and any other legal/statutory obligations we may have;
  • right to data portability – this is the right to have information provided in a structured, commonly used machine-readable format;
  • right to object to processing based on legitimate interests or the performance of a task in the public interest/exercise of official authority (including profiling);
  • rights related to automated decision making including profiling.

If you believe we have infringed your rights, we encourage you to contact our Data Protection Officer who will work with you to resolve the matter in a way that satisfies both you and the law. If for any reason you are unable to resolve the matter with us, you can escalate your concerns to the Information Commissioner’s Office, who is the UK’s independent authority responsible for upholding information rights in the public interest.


If you, or someone you know, wish to receive this privacy notice in a different format, such as large print, braille, audio recording, or translated into a different language, please contact us by telephone on 01524 382538 or by email at  [email protected] or by post at: St John’s Hospice, Slyne Road, Lancaster, LA2 6ST

Changes to this notice

From time to time, we may need to change this notice in response to different ways of working, or new regulations. The revision date at the bottom of this notice will tell you when it was last reviewed. As a minimum we will review the notice every three years.

We will notify you if there are any substantial changes to this notice that could affect your information rights.

Last updated April 2024