Privacy notice

This Privacy Notice explains when and why we collect personal information about you, how we use it and the conditions under which we may disclose it to others. Your personal data is defined as any information that can directly or indirectly identify you. This notice also explains how we keep your data safe and secure and includes information you need to know about your rights and how to exercise them. 

This privacy notice is for service users, members, donors, fundraisers, marketing and website users. Employees of End of Life Doula UK have access to our HR Privacy Notice.

 If you have any questions regarding our Privacy Notice and our use of your personal data, or would like to exercise any of your rights, please get in touch via the following information: 

Email us: emmaclare@eol-doula.uk – Emma Clare (Data Protection Lead)

Telephone us: 01137 339100

Data Protection Officer: nesar.khan@hope-may.com Nesar Khan (External Data Protection Officer – Hope & May)

If you are unhappy with the way we process your data, please get in touch by using one of the contact methods above. You can also make a complaint to the Information Commissioner’s Office (ICO) which regulates the use of information in the UK. They can be contacted by: 

Telephone 0303 123 1113 

Write to the ICO: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF 

Or by going online to www.ico.org.uk/concerns 

Who are we? 

We are End of Life Doula UK and for the purposes of UK Data Protection Law we are registered with the ICO under registration number ZB723402. Our purpose is to provide membership and support services to Doulas providing end of life support to dying individuals across the UK. 

In this Notice, ‘EoLDUK’’we’, ‘us’, ‘our’ means: 

End of Life Doula UK, company registration number 12839033 with a registered address at Ground Floor, 66 High Street, Lewes, East Sussex, BN7 1XG

End of Life Doula UK is committed to protecting your privacy. This document explains how we collect and use the personal information you provide to us whether online or via phone, mobile, e-mail, letter or other correspondence and documents.

• This document applies to all personal data processed by End of Life Doula UK
• The Membership Coordinator, Chair and Company Secretary of End of Life Doula UK shall take responsibility for End of Life Doula UK’s ongoing compliance with this policy
• Data subject access requests made to End of Life Doula UK shall be dealt with in a timely manner
• This policy shall be reviewed at least annually

How we collect information about you? 

If you are seeking support from an end of life doula via EoLDUK, information provided by the person seeking support during the initial telephone assessment processes may be: name, date of birth, address, gender, ethnicity, religion, contact details, health conditions, behavioural information, life background, family relationship details. 

If you are joining EoLDUK as a member information provided by you during the service delivery/membership phase will include name, contact details, address and payment details. It may also include details of any support needs and special category data which include health information, sexual orientation, race, ethnic origin, political opinion and religion. If you are providing support to members of the public via EoLDUK they may also contain criminal records information.  

How is your information used? 

We may use your personal information to  

• Carry out a thorough assessment of your needs; 

• Provide an appropriate service which best meets your needs; 

• Provide progress reports to funders

• Monitor and manage risk; 

• Protect yourself and the general public; 

• Safeguarding; 

• Conduct research; 

• Conduct evaluation; 

• Collate anonymised or pseudonymised statistical information for funders, the company and delivery partners

Lawful bases for use of your information

The following table explains the types of data we collect and the applicable lawful bases, under current data protection legislation, on which this data is processed.

We will only use your data in a manner that is appropriate considering the basis on which that data was collected, as set out in the previous table.

We will keep any personal information that you give use safely and securely, in accordance with our processes, the Data Protection Act and General Data Protection Regulations.

To work effectively on your behalf, any appropriate End of Life Doula member, volunteer, freelancer or employee, may access your information.

How we share your information

On the basis of legitimate interest, we may share your personal data with delivery partners in order to provide you with a professional service which best suits your needs. As part of the nature of our relationship with you, we may share your personal data with LWDW Training Ltd. Where this is the case, please note that each organisation acts as individual data controller of your personal information and you should read their privacy notice in addition to this one.

Personal data are not shared with funders. Information to funders are shared only anonymously.  

Wherever possible, we will let you know if we need to share your information with another individual, agency or organisation.

To comply with our duty of care and safeguarding, we may need to pass some information raising safeguarding concern with the authorities. In such circumstances, we apply vital interest and legitimate interest as our lawful basis. Data subjects’ rights and other UK GDPR provisions may be restricted when concerning personal data processed in these circumstances. Exceptions and exemptions are applied on a case by case basis.

Data Storage 

When End of Life Doula UK provides you with a service, your records are maintained and held within the organisation and the End of Life Doula(s) who are supporting you and his/her mentor.  To give you the best possible assistance, an End of Life Doula UK may need to discuss your case with another colleague.

Where a client gives specific permission for other people to be involved (e.g. friend, partner, family member, advocate) we will share information with those parties. We will note that you have given consent in our records and we may, in some cases, ask you to sign a consent form for us to share this information.

We keep records of all clients receiving a service from End of Life Doula UK. Case notes will be kept following client contact. The notes are kept to provide a professional service, maintain continuity of service and in order to reference what has happened or been discussed.

We take the principles of data minimisation and removal seriously and have internal policies in place to ensure that we only ever ask for the minimum amount of data for the associated purpose and delete that data promptly once it is no longer required.

How we secure your information and keep it safe

End of Life Doula UK shall ensure that personal data is stored securely using modern software that is kept-up-to-date.

• Access to personal data shall be limited to personnel who need access and appropriate security should be in place to avoid unauthorised sharing of information.
• When personal data is deleted this should be done safely such that the data is irrecoverable.

• All data processed by End of Life Doula UK should be done on one of the following lawful bases: consent, contract, legal obligation, vital interests, public task or legitimate interests.
• Where consent is relied upon as a lawful basis for processing data, evidence of opt-in consent shall be kept
• Where communications are sent to individuals based on their consent, the option for the individual to revoke their consent should be clearly available and systems should be in place to ensure such revocation is reflected accurately in End of Life Doula UK’s systems

Your rights

Under data protection laws in the UK and EU, you have certain rights over the personal information that we hold about you. If you would like to exercise your rights, please get in contact with our Data Protection Lead at emmaclare@eol-doula.uk. Here is a summary of the rights we think apply:  

• Right to be Informed 

You have the right to be informed as to how we use your data and under what lawful basis we carry out any processing. This Privacy Notice sets this information out however if you would like further information, please get in touch.  

• Right of Erasure – also known as the right to be forgotten 

You may ask us to delete some or all of your information we hold about you. Sometimes where we have a legal obligation we cannot erase your personal data. 

• Right to Object 

You have the right to object to processing where we are using your personal information such as where it is based on legitimate interests or for direct marketing. 

• Inaccurate personal information corrected 

Inaccurate or incomplete information we hold about you can be corrected. The accuracy of your information is important to us and we are working on ways to make this easier for you to review and correct the information that we hold about you. We will also carry out an annual accuracy check. If any of your information is out of date or if you are unsure of this, please get in touch through any of the contact details listed in this notice. 

• Right of restriction 

You have a right to restrict the processing of some or all of your personal information if there is a disagreement about its accuracy, or we are not lawfully allowed to use it. 

• Right to Access your information  

You have a right to request access to a copy of your personal information that we hold about you, along with the information on what personal information we use, why we use it, who we share it with, how long we keep it for and whenever it has been used for automated decision making. You can make a request for access free of charge and proof of identity is required. 

• Automated decision making 

Automated decision-making takes place when an electronic system uses personal information to make a decision without human intervention. You have the right to question the outcome of automated decisions that may create legal effects or create a similar significant impact on you. We currently do not undertake automated decision making.  

• Portability 

You can ask us to provide you or a third party with some of the personal information that we hold about you.  

• Right to withdraw consent  

Where you have provided consent to our use of your data, you also have the right to withdraw that consent at any time. This means that we will stop processing your data 

Transferring your information outside of the United Kingdom 

Where personal data is stored outside of the UK and the EEA, safeguards to protect personal data may include but are not limited to the UK Addendum used in conjunction with the EU Standard Contractual Clauses (SCCs), or UK International Data Transfer Agreement (IDTAs). Such safeguards will be subject to Transfer Risk Assessments (TRAs). 

Website Cookies 

A cookie is a small file of letters and numbers that is downloaded on to your computer when you visit a website. Cookies are used by many websites and can do several things, e. g remembering your preferences, recording what you have put in your shopping basket, and counting the number of people looking at a website.

Where cookies are used to collect personal data, we list these purposes above, along with other personal data that we collect. However, we also use some cookies that do not collect personal information but that do help us collect anonymous information about how people use our website. We use Google Analytics for this purpose. Google Analytics generates statistical and other information about website usage by means of cookies, which are stored on users’ computers. We will always ask for your consent where non-essential cookies are requested. The information collected by Google Analytics about usage of our website is not personally identifiable. The data is collected anonymously, stored by Google and used by us to create reports about website usage. Google’s privacy policy is available at http://www.google.com/privacypolicy.html. For more information about our website cookies, please refer to our Cookies Policy online. 

Links to other websites 

Our website may contain links to other websites of interest. Once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this Privacy Notice. You should exercise caution and look at the Privacy Notice applicable to the website in question. 

Changes to our Privacy Notice 

This privacy notice is kept under regular review.  If we make any significant changes to the way in which we process your information, we’ll make the required changes to this Privacy Notice and will notify you so that you can raise any concerns or objections with us. 

When making less impactful changes, we’ll update this notice and post a summary of the changes on our website. 

This privacy notice was last updated in August 2024.