Privacy policy - health and social care

Read our health and social care privacy policy.

1. What is the purpose of this Privacy Notice?

Sue Ryder is committed to protecting the privacy and security of your personal information.

This privacy notice explains how we collect and use personal information about you when you are referred to our services, or when you are the next of kin, family member or carer of someone who receives care whether in one of our hospices, care centres, in the community or supported living; or whether you are using any of our services including family or bereavement support or bereavement counselling.

Sue Ryder is a "data controller". This means that we are responsible for deciding how we hold and use personal information about you. We are required under data protection legislation to notify you of the information contained in this privacy notice.

2. What are the data protection principles?

We will comply with data protection law. This says that the personal information we hold about you 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.

3. How do we collect information and what personal information do we hold about you?

Personal data, or personal information, means any information which relates to a living person who can be identified from that data. It does not include data where the identity has been removed (anonymous data).

There are "special categories" of more sensitive personal data which require a higher level of protection and this includes the health information referred to in the services listed below.

We collect, store and use the following information about you in the course of using our services:

When using our palliative care services

  • When you visit one of our hospices as an inpatient or attend a day hospice or receive care in the community from our hospice at home team or our community nurse specialist, or use one of our related services (e.g. Goldline), then we collect your name, address, telephone or other contact details, date of birth, next of kin contact details, details of your GP, health information, details of any Lasting Power of Attorney (LPA), Independent Mental Capacity Advocate (IMCA), ethnicity or religious beliefs where you choose to give this to us.
  • If you access one of our hospice telephone services then we may record the call for training and governance purposes.
  • If you are the next of kin of a person receiving care in the community from our hospice at home team or our community nurse specialist, then we may use your contact details to  contact you about our work and how to support us. Our lawful basis for doing so and how you can manage your marketing preferences is set out below.
  • If you are the next of kin or a family member of someone who has died in one of our services then we will share your contact details, with your consent, with an independent medical examiner. This is an independent senior doctor whose role is to scrutinise causes of death.

When using our neurological care services

  • When you are a resident in one of our centres, or live in one of our supported living units or attend a day service, then we collect your name, date of birth, telephone or other contact details; GP, health information, care wishes, lasting Power of Attorney (LPA), Independent Mental Capacity Act (IMCA), next of kin contact details, ethnicity or religious beliefs where you choose to give this information to us.

When using our Homecare services in Scotland

When you receive our Homecare service we collect your name, address, telephone or other contact details, date of birth, next of kin contact details, GP, health information, and care wishes.

When accessing the following support services:

  • Bereavement counselling

When receiving bereavement counselling we collect your name, address, telephone number and case records.

  • Befriending service

We collect name, address and telephone number to provide our befriending service.

  • Family support (counselling, social work, chaplaincy, bereavement, children and young people)

If you are receiving family or bereavement support we will collect name, address, contact details and case notes. We may also collect date of birth (if under 18), details of agencies supporting you, GP, health information and other background information you choose to provide to help us provide the support required.  We may collect your ethnicity or religious beliefs where you choose to give this information to us. We may use your contact details to ask for and use your feedback to improve our services. Our lawful basis for doing so and how you manage your marketing preferences is set out below.

  • When you sign up to our Sue Ryder Grief Coach text-based service

We will need to collect your name, mobile number, gender, date of birth, context of grief, and any other information you provide related to the deceased and your relationship to them, or the person you are supporting through their grief, to enable the text based service to provide tailored support messages to you. Our lawful basis for doing this is contractual necessity on the mandatory information, and consent on the non-mandatory information. 

When you sign up to the Sue Ryder Grief Coach text service as a supporter of a bereaved person, then we will need to collect your name, mobile number, gender and relationship to the person you are supporting, and the deceased person, and any other information that will enable a more tailored text based service to be provided. Our lawful basis is contractual necessity for the mandatory information and consent for any additional information.

We will also use the mobile number to send you surveys about the service to enable us to improve the service.  Our lawful basis for doing this is legitimate interest.

We share the information provided above with where relevant to the third party technology platforms to enable the service to be provided, and with the following data processors to enable this service to be provided to you: Grief Coach (platform provider), Mailgun Technologies (communication service), Twilio, Slack Technologies.    

Case studies

With your explicit consent, we may use your photograph and/or case studies to promote Sue Ryder by including them in fundraising material, annual report etc.


We may collect your images on CCTV when you visit one of our hospices, clinics or care centres.

In order to promote the safety of our service users we may operate CCTV in service users’ bedrooms, at entrances and exits to our premises and in communal areas. We will not use CCTV in service users’ bathrooms or toilets. We will use CCTV recording where required to ensure individuals in our care are kept safe. Visitors’ images may be captured on CCTV as a result of this practice.

For service users we do this on the basis of consent. For visitors, employee and volunteers our legal basis is legitimate interests.

Signage will be displayed wherever this takes place.

Marketing preferences (next of kin - for anyone accessing our services)

We will only use your information for electronic marketing purposes if we have your consent. 

We may send marketing information by post or telephone you for marketing purposes, unless you have previously opted out or said that you don’t want to be contacted. Our legal basis for doing this is legitimate interests.

Where your details have been provided by your family member or friend, we will contact you within 30 days to provide you with the information in this privacy policy so that you know how your information is being used and how you can change your marketing preferences. 

You can change your marketing preferences at any time by emailing or telephoning 0808 164 4572.

Additional information

We will collect additional personal information about you and, to a limited extent, those who care for you or know you well, in the course of providing our services to you. We may also collect personal information from third parties e.g. from your GP or another hospital or relevant information from your relatives or those who care for you and know you well; financial information to support your financial transactions.

4. How do we use your personal information?

We use your personal information:

  • to provide you with the support services and other services requested
  • to create your health record, plan your care and provide you with a high standard of care
  • to contact you or your next of kin
  • to record the contact or care you are receiving from our services
  • to provide health and social care professionals who are involved in your care with relevant, accurate and up-to-date details about your health and other needs
  • to investigate any incidents, concerns or complaints you may have about your care or the standards of any health or social care professionals looking after you
  • to check and make improvements to our services
  • to invoice you where you are self-funding
  • to protect the health and safety of our staff, visitors, service users and buildings
  • in some cases, to use your anonymised information (by removing anything that identifies you) for research purposes and to help us improve the quality of our services
  • to let you know about our work and how you can support us.

5. Who might we share your information with?

Other healthcare professionals – e.g. GP, district nurse and on referrals to hospital – to explain about the care we have provided and also the care we are asking them to provide.

In our family and bereavement support services, we may, with your consent contact external agencies (eg school and GP) to be better able to provide support to you and your family. If there were safeguarding concerns, we may contact external agencies without your consent.

With your consent we will share your information with third parties who are providing a service that you wish to receive.

We may also need to provide your information to our contractors and suppliers who provide services on our behalf, e.g. occupational therapists, speech therapists, physiotherapists.

We use various health record systems, some of which are hosted by third parties and which in palliative care, also allow records to be input directly into your centralised health care record. These are all hosted by third parties who also comply with the legislation.

We may also need to provide your information to regulatory bodies such as the Care Quality Commission, who govern our services, and Local Authorities and Clinical Commissioning Groups, who commission our services under contracts.

We may also need to share your health information with a coroner or medical examiner when you die.

6. Our lawful grounds for processing

The data protection legislation requires us to rely on one or more lawful ground to process your personal information. These are the grounds we consider relevant:

Processing is necessary for the purpose of the legitimate interest pursued by us or a third party, except where your rights as a data subject override our legitimate interest.

The legitimate interest we rely on are:

  1. To fulfil the charitable purpose of Sue Ryder as a health and social care provider. If we are unable to process your personal data we will be unable to provide you with the services you need and we will not be able to meet our contractual obligations with our commissioners (CCGs and Local Authorities) or meet out legal obligations with our regulators (CQC).
  2. To fulfil the charitable purposes of Sue Ryder. If we are unable to fundraise then we will not be able to continue to provide our palliative, neurological and bereavement support.
  3. The health and safety of our visitors, service users and sites.

Processing is necessary for compliance with our legal obligations in relation to our regulators.

We process special category information (under GDPR we need to have an additional justification for collecting and storing this information):

  1. in limited circumstances, with your explicit consent (as mentioned above)
  2. in other cases, we rely on our legitimate interest in that as a charity providing health and social care services, we would not be able to provide the services that you require unless we were able to process your personal information and where the processing is necessary to provide health and social care services.

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

  1. Where we need to protect your vital interests (or someone else's interests), for example in a medical emergency where your information needs to be shared with the ambulance service
  2. Where it is needed in the public interest or for official purposes.

We may also need to provide your information to our infection prevention and control advisory services at NHS trusts. Other purposes for sharing your information with healthcare partner organisations include public health monitoring and statistics, NHS resource planning, public vaccination programmes, responding to threats to public health (such as epidemics, pandemics or new research findings), clinical trials of drugs or medical devices, regulatory approval of drugs or medical devices and reviewing standards of clinical practice.

Where you have given your consent, you still have the right to withdraw it.

To withdraw your consent, please contact the Service Director related to your service.

8. How long do we keep your information for?

We keep your information for no longer than is necessary, as set out in our Data Retention Schedule, a copy of which can be obtained from the Service Director or by writing to the Data Protection Officer (see below).

Where we are not under a legal obligation to retain your information, we will determine what is necessary by reference to the lawful basis for processing set out above and our legitimate interests.

If you have any questions about how long we keep your information, write to: Sue Ryder, Kings House, King Street, Sudbury, Suffolk, CO10 2ED for attention of the Data Protection Officer or email

9. How do we protect personal information?

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 employees, agents, contractors and other third parties who have a business need to know.

They will 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.

10. What are your rights?

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. You may be asked to correct the information yourself.
  • 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. This includes the right to prevent us from processing your data for the purposes of marketing.
  • 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 contact the Data Protection Officer in writing at the Sudbury Office (Kings House, King Street, Sudbury, Suffolk, CO10 2ED) or email

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.

You have a right to report any of your concerns about our use of your data to the Information Commissioner’s Office. You may do so by calling their helpline at 0303 123 1113.

11. 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.

12. Changes to this policy

Any changes we may make to this privacy policy in the future will be posted here at Significant changes will be brought to your attention.

13. Contact us

If you would like more information, or have any questions about this privacy policy, please contact the Service Director or write to the Data Protection officer at the following address:

Sue Ryder 
Kings House 
King Street 
CO10 2ED

or email:

This Privacy Policy was last updated on 8th June 2023.

National Data Opt Out

Sue Ryder only uses your confidential patient information (information that identifies you and says something about your health, care and treatment) to provide you with direct care, and it is only shared with others for the purposes of providing care as set out in our privacy policy. 

Find out more about how the NHS and care services use your data