Hospice care in your home or ours


Privacy Notice


Covid-19 (Coronavirus) and your information - Updated on 21st April 2020

Supplementary privacy note on Covid-19 for Patients/Service Users of ellenor

This notice describes how we may use your information to protect you and others during the Covid-19 outbreak. It supplements our main Privacy Notice.

The health and social care system is facing significant pressures due to the Covid-19 outbreak. Health and care information is essential to deliver care to individuals, to support health and social care services and to protect public health. Information will also be vital in researching, monitoring, tracking and managing the outbreak. In the current emergency it has become even more important to share health and care information across relevant organisations.

Existing law which allows confidential patient information to be used and shared appropriately and lawfully in a public health emergency is being used during this outbreak. Using this law the Secretary of State has required NHS Digital; NHS England and Improvement; Arms Length Bodies (such as Public Health England); local authorities; health organisations and GPs to share confidential patient information to respond to the Covid-19 outbreak. Any information used or shared during the Covid-19 outbreak will be limited to the period of the outbreak unless there is another legal basis to use the data. Further information is available on gov.uk and also some FAQs on this law.

During this period of emergency, opt-outs will not generally apply to the data used to support the Covid-19 outbreak, due to the public interest in sharing information. This includes National Data Opt-outs. However, in relation to the Summary Care Record, existing choices will be respected. Where data is used and shared under these laws your right to have personal data erased will also not apply.  It may also take us longer to respond to Subject Access requests, and new opt-out requests whilst we focus our efforts on responding to the outbreak.

In order to look after your health and care needs, we may share your confidential patient information including health and care records with clinical and non clinical staff in other health and care providers, for example neighbouring GP practices, hospitals and NHS 111. We may also use the details we have to send public health messages to you, either by phone, text or email.

During this period of emergency, we may offer you a consultation via telephone or video conferencing. By accepting the invitation and entering the consultation you are consenting to this. Your personal/confidential patient information will be safeguarded in the same way it would with any other consultation.

We will also be required to share personal/confidential patient information with health and care organisations and other bodies engaged in disease surveillance for the purposes of protecting public health, providing healthcare services to the public and monitoring and managing the outbreak. Further information about how health and care data is being used and shared by other NHS and social care organisations in a variety of ways to support the Covid-19 response is available on the NHS website. 

In such circumstances where you tell us you’re experiencing Covid-19 symptoms we may need to collect specific health data about you. Where we need to do so, we will not collect more information than we require, and we will ensure that any information collected is treated with the appropriate safeguards. 

We may amend this privacy notice at any time so please review it frequently. The date at the top of this page will be amended each time this notice is updated. 



ellenor (“we”) promise to respect any personal data you share with us and keep it safe.  We aim to be clear when we collect your data and this privacy notice explains both how we collect and use your information.

There are different reasons why we might need your personal details – the main ones are to provide you support and care, process your donations to us or register you for an event or for recruitment purposes. 

It’s so important that we can communicate with you. We’d like to keep you up to date about the work we’re doing and our vision of supporting more local families facing terminal illness – we don’t ever want to be in a position where we are unable to provide our care free of charge to families who most need it.

Our marketing communications include information about our latest news and events, fundraising campaigns, our ellenor lottery and raffles and our vital work. If you do not want to receive these communications contact our Supporter Care Team on 01322 626 509 or email preferences@ellenor.org.

We keep your personal data active on our fundraising database for a period of five years. When you receive a communication from us you can easily opt out and we will stop contacting you.  You can request to opt out of communications at any time simply by using the details above. After a period of five years if we don’t have your consent to continue contacting you we will securely archive your record on our database. 

Where we collect information about you from

We collect information in the following ways:

  • When you give it to us DIRECTLY

You may give us your information in order to sign up for one of our events, tell us your story, make a donation, apply for a vacancy or to become volunteer, or communicate with us.  With the ellenor lottery your information is collected by an organisation working for us, but we are responsible for your data at all times.

  • When you use our WEBSITE

Like most websites, we use “cookies” to help us make our site – and the way you use it – better. Cookies mean that a website will remember you. They’re small text files that sites transfer to your computer (or phone or tablet). They make interacting with a website faster and easier – for example by automatically filling your name and address in text fields. There are more details in our Cookie Policy.

  • When you give it to us INDIRECTLY

Your information may be shared with us by independent event organisers, for example the London Marathon or fundraising sites like Just Giving or Virgin Money Giving.  These independent third parties will only do so when you have indicated that you wish to support ellenor and with your consent. You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

Information available publicly
This may include information found in places such as Companies House and information that has been published in articles/ newspapers.

What personal data we collect and how we use it

The type and quantity of information we collect and how we use it depends on why you are providing it. 


If you support us, for example make a donation, volunteer, register to fundraise, sign up for an event, register for Gift Aid we will usually collect:

  • Your name
  • Your contact details
  • Your date of birth
  • Your bank or credit card details. 

Where it is appropriate we may also ask for:

  • Information relating to your health (for example if you are taking part in a high risk event) 
  • Why you have decided to donate to us – this question isn’t mandatory and we only want you to answer if you are comfortable telling us.

We will mainly use your data to:

  • Provide you with information on services, products or information that you asked for
  • Send you information on our latest news and events, fundraising campaigns, the ellenor lottery and raffles and our vital work.
  • Administer your donation or support your fundraising, including processing gift aid claims
  • Keep a record of your relationship with us
  • Ensure we know how you prefer to be contacted

Additional information for supporters
We work with carefully-selected partners who carry out work on our behalf. These partners include mailing houses, marketing agencies, IT specialists and research firms. The kind of work we may ask them to do includes processing, packaging, mailing and delivering purchases, answering questions about products or services, sending postal mail, emails and text messages, carrying out research or analysis and processing card payments. We only choose partners we can trust. We will only pass personal data to them if they have signed a contract that requires them to:

  • abide by the requirements of current data protection legislation
  • treat your information carefully as we would only use the information for the purposes it was supplied (and not for their own purposes or the purposes of any other organisation).
  • allow us to carry out checks to ensure they are doing all these things. We will never sell your data to any third party.


We do not sell or share personal details to third parties for the purposes of marketing.  

In relation to regulatory and legal requirements, ellenor use your personal information to verify communications in order to help us reduce fraud and protect your information.


Sharing your story

Some people choose to tell us about their experiences with ellenor. This may include them sharing sensitive information related to their health and family life, in addition to their biographical and contact information. 

If we have the explicit and informed consent of the individuals, or their parent or guardian if they are under 18, this information may be made public by us at our events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report and impact report. 



We ask you for information about yourself so that you can receive proper care and treatment. We keep this information, together with details of your care, because it may be needed if we see you again.

We may use some of this information for other specified reasons:

  • Giving you health care and treatment

  • Looking after and safeguarding the health of the general public

  • Managing and planning services

  • Preparing statistics on performance and activity

  • Investigating complaints or legal claims

  • Helping staff to review the care they provide to make sure it is of

    the highest standard

  • Training and educating staff (but you can choose whether or not to

    be involved personally)

  • Research approved by the Local Research Ethics Committee.(If

    anything to do with the research would involve you personally, you

    will be contacted to see if you are willing to take part. You will not be

    identified in any published results without your agreement).

  • Legal requirements, sometimes the law requires us to pass on

    information such as to notify a death.


Everyone working for ellenor has a legal duty to keep information

about you confidential. Where services are undertaken by non ellenor

staff, agreements are in place to ensure confidentiality.

In the event of a transfer to another health care provider, your medical records will be shared, in order to facilitate your continuing care. You may be receiving care from other health professionals as well. So that we can all work together for your benefit we may need to share some information about you. Whenever we can we shall remove details that identify you. The sharing of some types of very sensitive personal information is strictly controlled by law. Other professionals who receive information from us are also under a legal duty to keep it confidential.

In addition to the information recorded when we first meet you, people attending to your care will request or record information about you which will form an integral part of your patient notes and may be used as detailed above.

You have the right of access to your health records in accordance with the Data Protection Act 1998. You may request a copy of your records at any time. If you become aware of any incorrect information that we are holding about you, then you have the right to request that this information be changed or erased.

Full details can be found in the Patient Leaflet: Your Information - How we use it.

If at any time you have any questions about how we use your information, you can speak to the person in charge of your care or alternatively write to:
Director Of Patient Care, ellenor, Coldharbour Road, Gravesend Kent DA11 7HQ



If you apply for a vacancy or volunteering opportunity we will ask for information about yourself in order to process your application and for preparing statistics.


How we keep your data safe and who has access to it

We ensure that there are appropriate technical controls in place to protect your personal details.  For example our online forms are always encrypted and our network is protected and routinely monitored- we have passed the Government backed industry scheme securing Cyber Essentials Accreditation.  We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained staff and volunteers.

We use external companies to collect our lottery and retail gift aid data and to process personal data for our marketing and fundraising communications. Our Human Resources department use external companies in relation to payroll and pension administration and DBS background checks. We do comprehensive checks on these companies before we work with them, and put a contract in place that sets out our expectations and requirements; especially regarding how they manage the personal data they have collected or have access to.  

We may need to disclose your details if required to the police, regulatory bodies or legal advisors.

We will only ever share your data in other circumstances if we have your explicit and informed consent.


Asking us to stop using your data or finding out more

You have a right to ask us to stop processing your personal data, and if it’s not necessary for the purpose you provided it to us for (e.g. processing your donation or registering you for an event) we will do so.  Simply contact our Database Team on 01474 320007 or email preferences@ellenor.org.

You have a right to ask for a copy of the information we hold about you, although we may charge a small fee to cover the costs involved.  If there are any discrepancies in the information we provide, please let us know and we will correct them.

If you want to access your information, please send a letter with your request to the IG Lead, Tracey Hill and the appropriate forms will be sent for completion.  We will require confirmation of your identity and note that we do not accept these requests by email so we can ensure that we only provide personal data to the right person.  


Changes to our policy

We may change this Privacy Policy from time to time.  If we make any significant changes in the way we treat your personal information we will contact you directly and let people know on our website – www.ellenor.org.


Complaints Policy

If you are not happy with any aspects of how we collect and store private data please tell us - we may be able to provide further explanation of our actions, or improve if our performance is less than it should be. We promise to take all complaints seriously, and to deal with them in a timely manner.

To speak to us about your complaint please contact us on: 
01474 320007 or email info@ellenor.org

There are also other routes you can take if you feel we have not adequately resolved your complaint. These include:

The Charity Commission
The Charity Commission, P.O. Box 1227, Liverpool, L69 3UG
www.charity-commission.gov.uk / Tel. no. 0845 600 8000

Fundraising Regulator
2nd floor, CAN Mezzanine Building, 49-51 East Road, London, N1 6AH
enquiries@fundraisingregulator.org.uk / 0300 999 3407

Care Quality Commission

CQC National Customer Service Centre, Citygate, Gallowgate, Newcastle upon Tyne, NE1 4PA

www.cqc.org.uk/contact-us / 03000 616161

Information Commissioner’s Office

Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow
Cheshire, SK9 5AF

0303 123 1113 (local rate) or 01625 545 745 (national rate)


ellenor is a charity registered in England and Wales (1121561), and a company limited by guarantee (6302132). Registered office at Coldharbour Road, Gravesend, Kent. DA11 7HQ