Privacy policy

At Demelza Hospice Care for Children ("Demelza") we are committed to ensuring that your privacy, whether your family uses our services and facilities at one of our hospices or you are a supporter of our charity, is protected and respected.

Please read the following statement which sets out the basis on which any personal information collected about you or your family, or that you provide to us, will be processed by us.

  • To always store your personal details securely.
  • We will never exchange or sell your information to another organisation.
  • To only hold your information for as long as necessary.
  • To make sure you are always in control of how we use your information, and that you will always have the right to ask us to stop using it, which we will do promptly.
  • We will only contact you in the ways that you wish, making use of what you've told us and publicly available information (which we may obtain from suppliers) to tailor our communications, so that they are more appropriate and relevant to your interests.

Vin Jarrett

 

Lavinia Jarrett, Acting Chief Executive

lavinia.jarrett@demelza.org.uk

01795 845200

Demelza Hospice Care for Children, Demelza House, Rook Lane, Bobbing, Sittingbourne, Kent, ME9 8DZ.


Demelza is a registered charity providing respite and end of life care to seriously ill babies, children and young people, as well as providing support for their families. Our registered charity number is 1039651.

As an organisation, Demelza is registered with the Information Commissioner in accordance with the General Data Protection Regulations.


By using our website, social media pages or providing your information, you consent to our collection and use of the information you provide in the way(s) set out in this policy. If you do not agree to this policy please consider carefully if you should use our website, social media pages or services.

We may make changes to this policy from time to time. If we do so, we will post the changes on this page and make sure it’s publicised clearly on our website. These changes will apply from the time we post them. This policy was last changed on 26 May 2021.


Personal data is information that can be used to help identify an individual, such as name, address, phone number, email address, and now online identifiers (such as Cookies (www.demelza.org.uk/cookies) and IP Address, which is the location of your computer on the internet).

The personal data that is processed by Demelza will include Special category data. This is data in relation to health, medical conditions and of children and is regarded as high risk in terms of data privacy and protection.  We ensure there are robust controls in terms of the privacy and protection of this data and in full compliance with our legal requirements, but also our obligations to those who share this data with us.


It's important that you read the full policy to understand what information we hold, how we may use it, and what your rights are - but if you don't have time to read it all now, here's a quick summary:

  • We collect information that is either personal data (as outlined above) or non-personal data (such as webpages accessed).
  • We collect information about the families and children we provide care and support to, supporters, customers, users, volunteers and employees.
  • We collect information to provide services or goods, to provide information, to fundraise for our vital work, for administration, profiling, analysis, and for the prevention and detection of crime.
  • We will make sure that we update your data, when you tell us to do so.
  • We only collect the information that we need or that would be useful to us to provide you with the best possible service and experience.
  • We do our very best to keep personal information secure, including SSL technology (secure server software) wherever we collect personal data online.
  • We never sell your data and we will never share it with another company or charity for marketing purposes.
  • We only share data where we are required by law or with carefully selected partners who we work with. All our partners are required by their contract to treat your data as carefully as we would, to only use it as instructed, and to allow us to check that they do this.
  • Our websites use Cookies - for more information check our Cookies policy.

They are the basics, but don't forget to come back later and read the full policy (below), so you've got all the details you need.

The Full Policy:

This policy applies to all the websites we operate, our use of emails and text messages for marketing purposes, and any other methods we use for collecting information. It covers what we collect and why, what we do with the information, what we won't do with the information, and what rights you have.

We will only ever collect the information we need – including data that will be useful to help improve our services. We collect information as follows:

  1. Personal information such as name, postal address, phone number, email address, date of birth (where appropriate), information about your interests and hobbies etc. Personal data has now been extended to include online identifiers, such as IP addresses (the location of the computer on the internet),

  2. Non-personal information such as pages accessed and files downloaded. This helps us to determine how many people use our website, how many people visit on a regular basis, and how popular our pages are. This information doesn't tell us anything about who you are or where you live. It simply allows us to monitor and improve our services.

We collect this information in connection with specific activities, such as newsletter requests, event registration, product purchases (such as our Lottery), feedback, donations, etc. The information is either needed to fulfil your request or to enable us to provide you with a more personalised service.

You don't have to disclose any of this information to browse our website. However, if you do choose to withhold requested information, we may not be able to provide you with complete or particular services.

You may give us information about you when you:

  • Register with us or set up an online account

  • Make-a-donation, fundraise on our behalf or register for an event

  • Order products or services from us

  • Make an enquiry about our activities, services or products

  • Seek care, support and assistance from us (e.g. by contacting our referrals team)

  • Request publications, newsletters or other information from us

  • Volunteer with us or apply for a job (including sending us your CV)

  • Report a problem with our website

  • Otherwise give us personal information (e.g. sensitive information such as your physical or mental health or condition)

You may give us this information when you correspond with us by our website, phone, email or otherwise.

Information we receive from other sources:
We may also obtain personal information about you from other sources, such as if a family member, a friend or your GP contacts us on your behalf, or if a fundraiser passes on your details to us. We may also combine your personal information with other information we collect from third parties (e.g. for fundraising purposes). We will notify you when we receive information about you from them and the purposes for which we intend to use that information.

If you are aged 16 or under, you must get your parent/guardian’s permission before you provide any personal information to us.


We use Cookies on our website, for full details see our Cookies policy (www.demelza.org.uk/cookies).


We will use the information you provide to:

  • Fulfil your requests – such as applications for membership of our Lottery, donations, participation in campaigns and provision of information.

  • Process sales transactions, donations or other payments and verify financial transactions. Claim Gift Aid on your donations.

  • Handle orders, deliver products and communicate with you about orders.

  • Provide a personalised service to you when you visit our websites – this could include customising the content and/or layout of our website and webpages for individual users.

  • Record any contact we have with you.

  • Provide you with information about other services, events and products we offer that are similar to those that you have already purchased or enquired about.

  • Prevent or detect fraud or abuses of our websites and enable third parties to carry out technical, logistical or other functions on our behalf.

  • To carry out research on the demographics, interests and behaviour of our users and supporters, to help us gain a better understanding of them and to enable us to improve our service. This research may be carried out internally by our employees or we may ask another company to do this work on our behalf.

  • Send you information and communications about what we do and how we can help you, and how you can help us (e.g. our campaigns, volunteering and fundraising).

  • If you have agreed to it, provide you with information that we think may be of interest to you.

  • Carry out our obligations arising from any contracts entered into between you and us.

  • Look into, and respond to, complaints, incidents, near misses, legal matters or any other issues.

  • Send you information and communication around your employment or volunteering role.


We will send marketing information to individuals who have said that they agree to us doing this or have a legitimate interest in our work, and we will only do so in the way(s) you have agreed to. We do also undertake online remarketing activity, where you have visited Demelza’s website.

If you are not currently receiving marketing communications from us and wish to do so, please let us know by contacting our Supporter Services team fundraising@demelza.org.uk or by calling 0300 365 3653 (Monday-Friday, 9am-5pm).

All of our email marketing activity will include an unsubscribe link. If you would like to stop receiving this marketing activity from us, you can tell us via this link.


Demelza Hospice Care for Children will process personal information for certain legitimate organisational purposes. This is because when you, for example, request to receive services or products from Demelza, we have a legitimate organisational interest to use your personal information to respond to you and where there is no overriding prejudice to you by using your personal information for this purpose. This also includes some or all of the following:

  • Where the processing enables us to enhance, modify, personalise or otherwise improve our services / communications for the benefit of our “customers”.

  • To identify and prevent fraud

  • To enhance the security of our network and information services

  • To better understand how our “customers” interact with our website

  • To provide postal communications which we believe will be of interest to you

  • To determine the effectiveness of promotional campaigns and advertising.

Wherever Demelza process data for these purposes, we will always ensure that your own personal rights take precedence and take account of these rights. You have the right, at any time, to object to Demelza processing your data in this way. Demelza will always provide you with ways to update your communication preferences. This is the case, for example, where we seek to obtain your consent to receive “Marketing” Communications via email about Demelza. 

Privacy and your information

For those we provide care and support to.

Note: we understand that our care may apply to more than one child in a family, and also the support of the wider family, so for the context of this policy, each child will have their own ‘Record’ and each member of the wider family we offer support to, including  siblings, will have their own ‘Record’.

What you need to know about your records and those of your child at Demelza Hospice Care for Children below.


We receive information about your child from your child, you, your family and from other people involved their care (e.g. GP, hospital doctors and nurses). We use this information to keep records about their care (Records).

These Records are stored electronically or on paper and may include:

  • Personal details like their name, address, date of birth, parent/guardian, legal representative.

  • Contacts we have with you like appointments and telephone calls.

  • Notes and reports about their health, treatment and care.

  • Results of x-rays and laboratory tests.

  • Relevant information from people who care for them or know them well

  • Things we are told about wishes and preferences


It is important that all necessary teams at Demelza have access to up to date and accurate Records about your child. This helps us ensure that they receive the best possible care. It also means that your concerns can be investigated properly if you have a complaint about your child’s care.


Members of the Demelza team looking after your child may share relevant information from their Records with each other. This team may include doctors, nurses, therapists, pharmacists, administration staff and people providing emotional and practical family support. It may also include students or trainees in medicine or health and social care who are working with our team.

Often it is necessary to share relevant information from your child’s Records with health or social care professionals in other organisations who are directly involved in their care. Such professionals may include GPs or district nurses, hospital teams, ambulance staff or social care services.

In these circumstances, we only share relevant information from their Records for medical purposes and if these people have a genuine need for it, or if we are under a legal obligation to do so. If you give us any specific instructions not to share their Records in this way, we will respect this to the extent we are not prohibited from doing so by any legal obligation, although this may affect your child’s care. If it will affect care, we will let you know.


Your child’s Records help us to review the care we provide and to make sure that it is of the highest possible standard. This includes routine audits of our care or investigating and responding to complaints, incidents or near misses. Our regulatory body, the Care Quality Commission (CQC), or NHS organisations who commission services from us, may also ask to view relevant information from these Records and/or seek feedback from you about the service we provide. We may also share information with local organisations, or commissioners, to gain Commissioned care funding, which Demelza is not currently accessing.

If you don’t want us to share relevant information from your child’s Records with these organisations or you don’t want to provide feedback, they will respect your wishes where it is possible to carry out their checks without looking at relevant information from Records and/or contacting you for feedback.

Some relevant information in your child’s Records may also be shared with other professionals or other organisations. This might be to help teach health or social care professionals, to provide statistical information to national organisations with interests in health care or health care research. When relevant information from your child’s Records are shared in this way, we remove or disguise any personal or identifiable information about you wherever possible. Your wishes will be respected, and if you do not want us to share your child’s Records in this way it will not affect their care.

Occasionally, we are required by law to share Records and may therefore be prevented from respecting your wishes not to share these Records. This includes when:

  • Our regulator, the CQC, is carrying out an audit.

  • We find an infectious disease (like meningitis or measles) which may put others in danger.

  • A formal court order has been made.

  • Other organisations like the police or social services need it to prevent serious crime or where there is a child or adult at risk of abuse or neglect.


The national data opt-out was introduced on 25 May 2018, enabling individuals to opt-out from the use of their data for research or planning purposes. Demelza will not share your data or information for research purposes, and will only share your data for reasons outlined in this policy and for the purposes of providing individual or direct care.

For more information on the national data opt-out, please visit www.digital.nhs.uk/services/national-data-opt-out. You can find details here for how you can view and manage your choices.


You can help us by giving us the right details about yourself and your child, and by letting us know if you have any particular wishes about sharing your Records. You can also help by letting us know when any of these details change.


We take our obligations to keep your child’s Records safe very seriously. Everyone working for us, or who has received their Records from us, has a legal duty to keep Records confidential. They are monitored by the Caldicott Guardian, a senior clinician responsible for ensuring that people’s rights to confidentiality are respected.


Liz Bray

 

Liz Bray, Director of Clinical Services

liz.bray@demelza.org.uk

01795 845200

Demelza Hospice Care for Children, Demelza House, Rook Lane, Bobbing, Sittingbourne, Kent, ME9 8DZ.

Sharing your information

  • We are legally required to do so, e.g. by a law enforcement agency legitimately exercising a power or if compelled by a Court order.

  • We believe it is necessary to protect or defend our rights, property or the personal safety of our staff and volunteers, or visitors to our premises or websites.

  • We are working with a carefully-selected partner that is carrying out work on our behalf. These partners may 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 the General Data Protection Regulations.

    • Treat your information as 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.


Information is stored by us on computers located in the UK. We may transfer the information to other offices and to other reputable third party organisations as explained above. We may also store information in paper files.

The personal information that we collect from or about you may be transferred to, and stored at, a destination outside the European Economic Area (EEA) . For example, we may share your data with third party suppliers for fundraising events that are outside the EEA, or in order to process credit/debit card transactions, the bank or card processing agency may require verification of your personal details for authorisation outside the EEA.

Whenever we transfer your personal data out of the EEA, we ensure a similar degree of data privacy and protection is afforded to it by ensuring at least one of the following safeguards is implemented:

  • We will only transfer your personal data to countries that have been deemed to provide an adequate level of protection for personal data by the UK and European Commission. For further details, see European Commission: Adequacy of the protection of personal data in non-EU countries.

  • Where we use service providers who are not in territories approved by the UK or EU commission, we will look to additional safeguards such as Standard Contractual Clauses (SCCs) approved by the European Commission which give personal data the same protection it has in Europe. For further details, see European Commission: Model contracts for the transfer of personal data to third countries

  • Where we use providers based in the US, we formerly would have relied upon the assurances of the US Privacy Shield. However, from July 2020 we will now apply additional safeguards as outlined above

By submitting your personal information, you accept to this transfer, storing or processing. We will take all steps reasonably necessary to ensure that your personal information is treated securely and in accordance with this privacy notice. 

We place great importance on the security of all personal data and information associated with our supporters, customers and beneficiaries. We have security measures in place to protect against the loss, misuse and alteration of personal data under our control. For example, only authorised personnel are permitted to access user information and we use secure server software (SSL) to encrypt financial and personal information you input before it is sent to us.

While we cannot ensure or guarantee that loss, misuse or alteration of data will not occur while it is under our control, we use our best efforts to try to prevent this.

We will keep your information only for as long as we need it to provide you with the goods, services or information you have requested, to administer your relationship with us, or the preferences of our supporters, to comply with the law, or to ensure we do not communicate with you if you have asked us not to do so. When we no longer need information we will always dispose of it securely, as outlined in our data retention policy.


We never sell or share your information to other organisations to use for their own purposes.


You retain control of how we use your data and you have the right to ask us to stop processing your personal information, which we will do. In some circumstances, we may legally be required to retain your personal information for legal or audit purposes. However, this will be discussed with you depending on your requirements. Please contact dataprotection@demelza.org.uk or call us on 01795 845200 if you have any concerns.

You also have the right to request a copy of the information we hold about you. If you wish to access your information, please complete and return a Subject Access Request form to us at: Care Data and Administration Manager, Demelza Hospice Care for Children, Rook Lane, Bobbing, Sittingbourne, Kent, ME9 8DZ.

The General Data Protection Regulations gives you certain rights over your data and how we use it. These include:

  • The right in certain circumstances to have inaccurate personal data rectified, blocked, erased or destroyed.

  • The right to ask for your data to be moved, copied or transferred to another organisation.

  • The right to prevent your data being used for marketing purposes

  • The right of access to a copy of the information we hold about you (known as a subject access request – see above).

If you wish to exercise any of these rights, please contact us in writing at Data Protection Lead, Demelza Hospice Care for Children, Demelza House, Rook Lane, Bobbing, Sittingbourne, Kent, ME9 8DZ, by emailing dataprotection@demelza.org.uk or calling 01795 845200.


To help us to promote our products and services to appropriate individuals, and to provide our supporters with the best experience possible, we may from time to time undertake profiling and automated decision-making activities, to target key individuals to to whom we will market specific  products and services to.

Before we do this, we will:

  • Carry out a Data Protection Impact Assessment to consider and address the risks before we start any new automated decision-making or profiling.

  • Tell our supporters about the profiling and automated decision-making we carry out, what information we use to create the profiles and where we get this information from.

  • Use anonymised data in our profiling activities.

You will always have the right to opt out of any or all forms of processing by Demelza. 

As a fundraising organisation we may also use information from publicly available sources such as Companies House, the Electoral Register, the internet and the media to carry out research to assess your inclination and capacity to support the charity financially. We may carry out wealth screening, a process which uses trusted third-party partners to automate some of this work. You will always have the right to opt out of this processing. 

We may use information gathered from public sources alongside the information you provide to undertake analysis of who might support the Charity and to understand the preferences of our donors about events, communication and services. By doing this, we can focus 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.  

If you would prefer that we do not use your personal information in this way, please let us know in writing at Data Protection Lead, Demelza Hospice Care for Children, Demelza House, Rook Lane, Bobbing, Sittingbourne, Kent, ME9 8DZ, by emailing dataprotection@demelza.org.uk or calling 01795 845200.


Facebook marketing:
We may participate in Facebook’s ‘Custom Audience’ programme which enables us to display ads to our existing supporters when they visit Facebook. We provide your email address, mobile number and address to Facebook so they can determine whether you are a registered account holder with them. Our adverts may then appear when you access Facebook. Your data is sent in an encrypted format that is deleted by Facebook if it does not match with a Facebook account. 

For more information please see https://www.facebook.com/business/help/744354708981227 and Facebook’s Data Policy at https://en-gb.facebook.com/policy.php.


When you make a payment or donation via our website with a credit or debit card, please be assured that any payment transactions are encrypted using either:


For more information about your rights under the General Data Protection Regulations, go to the website of the Information Commissioner’s Office at www.ico.org.uk.

Demelza is not a ‘public authority’ as defined under the Freedom of Information Act and we will therefore not respond to requests for information made under this Act; using the funds generously donated to us by our supporters for such activities is not in accordance with our charitable purposes.


If you would like to make a complaint about how we process your personal data, please contact our Data Controller. You can contact us to make a complaint by emailing complaints@demelza.org.uk , writing to:
Complaints,
Demelza Hospice Care for Children,
Rook Lane,
Bobbing,
Kent,
ME9 8DZ
or telephone 01795 845200. In the event of a complaint, Demelza will aim to respond to you within three working days.

If you are not happy with how your complaint is dealt with, you should contact the Information Commissioner’s Office (www.ico.org.uk).  Alternatively, you are entitled to make a complaint to the Information Commissioner’s Office without first referring your complaint to us.

For further information please see the Information Commissioner's guidance.