Last updated: 28/08/2026

Dying to Help CIC supports people with death, dying, funerals, grief and end of life planning. We also run community events, education and online services.

This Privacy Notice explains what personal information we may collect, why we use it, how we protect it and the rights you have.

1. Who we are

Dying to Help Community Interest Company is the data controller for the personal information covered by this notice. This means we are responsible for deciding why and how that information is used.

Organisation: Dying to Help Community Interest Company
Company number: 15265878
Privacy contact: Emma Satchell, Executive Director
Email: [email protected]
Website: www.dyingtohelp.co.uk

2. Who this notice covers

This notice applies to clients, prospective clients, relatives, chosen family, carers, funeral arrangers, event and workshop participants, supporters, website visitors and other living people whose information Dying to Help receives through its work.

Separate information may sometimes be provided for particular services, mailing lists or cookies where needed.

3. What information we may collect

The information we need depends on why you are in contact with us. It may include:

your name and contact details;

your preferred way to communicate;

enquiries, appointments, service agreements and correspondence;

attendance at events, workshops or other activities;

invoices and payment records;

end of life wishes, priorities, values and relationships;

communication or accessibility needs;

relevant health, disability, medication, mobility, symptoms or care information where this is needed to support you safely;

emergency contacts or relevant professionals;

funeral arrangements, family contributions, life stories, ceremony drafts, readings, music and other funeral information;

case notes, safeguarding concerns, incidents or complaints;

photographs, audio, video, testimonials or stories where there is an appropriate basis for their use; and

technical information produced when you use our website or digital services, such as IP address, browser information and website activity where applicable.

Some of the information we handle may be particularly sensitive, sometimes called special category information. This may include information about health, disability, racial or ethnic origin, religion or belief, sex life or sexual orientation.

4. How we receive information

We usually receive information directly from you.

We may also receive it from somebody involved in your support or arrangements, such as a relative, chosen family member, funeral director, care professional, commissioning organisation, referrer or another person involved in the work.

If you give us information about somebody else, please avoid sharing more than is necessary and, where appropriate, let them know that you have shared their information with us.

5. Why we use your information

We only use personal information where we have a lawful reason to do so.

We may use it to:

respond to enquiries;

arrange and provide doula, funeral, end of life planning, bereavement, education or community services;

communicate with you and keep appropriate records;

provide safe, relevant and person-led support;

manage appointments, invoices, payments, accounting and administration;

respond to safeguarding concerns, emergencies or serious risks;

meet legal, insurance and governance responsibilities;

maintain professional standards, mentoring and reflective practice;

deal with complaints or requests about your information; and

use photographs, recordings, testimonials or stories for an agreed purpose where an appropriate lawful basis and permission are in place.

Depending on what we are doing, our lawful basis may include contract, steps taken before entering into a contract, legal obligation, legitimate interests, recognised legitimate interests, vital interests or consent.

Where special category information is involved, an additional legal condition will also apply.

The ICO requires organisations to explain both why personal data is used and the lawful basis relied upon.

6. Funeral information and people who have died

Information solely about someone who has died is not personal data under UK GDPR. We nevertheless treat funeral information, life stories and family material respectfully and securely.

Information about someone who has died can also reveal personal or sensitive information about somebody who is still living. For example, information about relationships, health, beliefs or family circumstances may identify or reveal information about another person.

Where this happens, data protection law applies to the living person's information.

Before sensitive information about an identifiable living person is recorded, included in a ceremony, livestreamed, recorded or otherwise shared publicly, Dying to Help will consider whether this is necessary, appropriate and lawful. Agreement from the person arranging a funeral does not automatically authorise disclosure of sensitive information about everybody else.

7. Who we may share information with

We only share information where there is a justified reason and only share what is necessary.

Depending on the circumstances, this may include:

a person you have asked us to involve;

relatives, chosen family members or carers;

funeral directors;

health and care professionals;

authorised Dying to Help contractors or associates;

professional mentors, including End of Life Doula UK mentoring, using anonymised or minimised information wherever possible;

carefully selected service providers that host, store, transmit or help manage information;

accountants, insurers or legal advisers; and

local authorities, emergency services, regulators, courts or other bodies where disclosure is required or justified.

We do not disclose information to relatives or professionals simply because they ask for it or because they are involved. We consider your wishes, the purpose, lawful authority and the minimum information required.

We do not sell your personal information.

8. AI, transcription and digital tools

Dying to Help may use digital tools to support tasks such as administration, transcription or drafting.

We will not enter identifiable or confidential client information into consumer AI services, personal note applications or other unapproved external systems.

Before an external AI or transcription service is approved for identifiable information, we will consider why it is needed, what information is transferred, the provider's security and terms, retention, international transfers, confidentiality, human oversight and your rights.

Where practicable, information will be anonymised or minimised.

AI-generated material will be checked by a person. AI will not replace Dying to Help's professional judgement or independently make significant decisions about you.

9. Photographs, recordings and stories

Agreeing to receive a service from Dying to Help does not automatically give us permission to photograph or record you, publish your information, tag you on social media or tell your story publicly.

Where permission is required, we will explain the proposed purpose, audience and platform.

You may refuse publicity without losing access to a service.

Permission can normally be withdrawn for future use, although material that has already been lawfully published or distributed may not always be fully recoverable.

10. Website forms, mailing lists and cookies

If you contact us through the website, book a service, make a purchase, register for an event or join a mailing list, we may collect the information needed to deal with that request.

Marketing emails will only be sent where we have an appropriate lawful basis, and you can unsubscribe from marketing communications at any time.

Our website also uses cookies and similar technologies. Some cookies are essential for the website to work. Where cookies are not strictly necessary, we will obtain permission where required.

You can also manage cookies through your browser or the cookie controls available on the website.

The ICO requires website visitors to be told when cookies are being used and, for cookies that are not strictly necessary, consent is generally required.

11. How we protect your information

We use proportionate safeguards including:

access-controlled accounts;

strong passwords;

multi-factor authentication where available;

supported and secured devices;

secure digital storage;

careful information sharing;

locked or access-controlled storage for paper records; and

confidential shredding and secure deletion.

No system can remove every possible risk. If a personal data breach occurs, we will contain and investigate it, document our decision and notify affected people or the Information Commissioner's Office where the law requires this.

12. Information processed outside the UK

Some technology providers may process information outside the UK.

Where this happens, Dying to Help will ensure that an appropriate legal transfer mechanism and safeguards apply and will consider the practical risks associated with the transfer.

13. How long we keep information

We keep personal information only for as long as it is reasonably needed.

Our normal starting points are:

Preliminary or unsuccessful enquiries
Normally up to 12 months after the last meaningful contact, unless the information is needed for a complaint, safeguarding matter or legal claim.

Client, doula, end of life planning and funeral records
Normally seven years after the service or support ends, subject to the needs of the particular record and any legal, safeguarding, insurance or complaint issue.

Financial and accounting records
Normally six years after the end of the relevant financial year, or longer where the law requires.

Photographs, publicity permissions and published material
For the agreed purpose and review period.

Safeguarding, incidents, complaints and legal matters
For the period justified by the nature of the issue and any legal, insurance or regulatory requirements.

When information is no longer required, paper records are confidentially shredded and digital information is securely deleted or anonymised where appropriate.

14. Your data protection rights

Depending on the circumstances, you may have the right to:

be informed about how your information is used;

ask for a copy of your personal information;

have inaccurate or incomplete information corrected;

ask for information to be erased;

ask for the use of information to be restricted;

object to certain processing, including direct marketing;

receive certain information in a portable format; and

receive appropriate safeguards where a significant decision is made solely by automated means.

These rights are not absolute. Which rights apply will depend on the information, purpose and lawful basis involved.

You do not need to use legal language or complete a particular form.

To exercise your rights, contact [email protected]. We may ask for proportionate evidence of identity.

15. Data protection complaints

If you believe Dying to Help has mishandled your personal information, you can make a data protection complaint by emailing:

[email protected]

You do not need to use legal terminology or identify a particular piece of legislation when making a complaint.

We will:

provide an accessible way for you to raise your complaint;

acknowledge your complaint within 30 days;

take appropriate steps to investigate it without undue delay;

keep you informed where appropriate; and

communicate the outcome of our investigation without undue delay.

These requirements apply to organisations handling personal information under the Data (Use and Access) Act 2025.

You can also complain to the Information Commissioner's Office (ICO).

Telephone: 0303 123 1113
Website: ico.org.uk/make-a-complaint

16. Links to other websites

Our website may contain links to websites or services operated by other organisations.

Dying to Help is not responsible for the privacy practices of those organisations. We recommend checking their own privacy information before providing personal information to them.

17. Changes to this notice

We will review this Privacy Notice at least annually and sooner if our services, systems or legal obligations change.

If an important change significantly affects how we use information we have already collected, we will take reasonable steps to bring it to the attention of affected people.