Shine Privacy Policy


Shine is committed to protecting your personal information and being transparent about what we do with it.  This statement describes how Shine collects and uses your personal information in accordance with current legislation and best practice.

Shine (“we”) promises to respect any personal data you share with us, or that we receive from other organisations, and keep it safe.  We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect.

Developing a better understanding of our supporters through their personal data allows us to make better decisions, target our services more efficiently and, ultimately, helps us take action against the effects of spina bifida or hydrocephalus by providing information, emotional support, campaigning and a voice for all affected.

This Privacy Policy sets out how and why we obtain, use and protect your personal information.

Key points:

  • We will only send you marketing information electronically, by email, if you specifically agree to us doing so.
  • You can change your marketing preferences at any time by emailing [email protected] or by calling us on 01733 555988.
  • If you ask us to stop sending marketing information we will update our records to stop further mailing as quickly as possible.  However, for up to 28 days you may still receive further mailings which were already in progress prior to you asking us to stop.
  • We may send you marketing information by post unless you have previously opted out or said that you don’t want to be contacted.  Prior to carrying out postal mailings we may check against the Mail Preference Service.  We also use a data cleaning company based in the UK to ensure that our address records are as accurate and up to date, and to stop mailing to people who are deceased.
  • We collect personal data, for example, your name, postal and email addresses, when you give them to us for various purposes, such as donating, seeking advice, signing up for an event, or applying for a job.
  • We gather information about traffic to and on our website to improve the site and for marketing purposes.  We use cookies and tags on our website. Please see our Cookie Policy for further information.
  • We provide links to other websites whose privacy practices are outside our control.  You should check the privacy practices of any third-party website before disclosing personal information.
  • We use the information you give us for segmentation of our databases, for example, by analysing information such as the postcodes of supporters, names, and addresses.  This enables us to tailor our communications to you and in a fundraising context, enabling us to raise more funds and to notify you of any events where you can meet and connect with professionals and peers.
  • If we rely on your consent to process your data, you can withdraw your consent at any time.

This policy is written in accordance with the General Data Protection Regulation.  Shine is registered as a Data Controller with the Information Commissioner’s Office under number Z5727904.  Shine subsidiary company Shine (Trading) Ltd will also process your information in accordance with this privacy policy.

If you have any questions about this Privacy Policy, please contact our Data Protection Officer, Laura Threadingham in writing at Shine, Unit 4, The Forum, Minerva Business Park, Peterborough, Cambridgeshire, PE2 6FT, or by email [email protected]

This Privacy Policy was last updated in July 2019.

  1. Why we use your information

We will only use your information where we have a legal basis to do so and will always respect your rights.

Unless you have previously consented, we will use your information because we consider we have a legitimate interest to do so.  Where we do rely on legitimate interest to use your information, we will always ensure this is done in a way not to be intrusive or cause distress and respecting your rights.

In compliance with Privacy and Electronic Communications Regulation (PECR) we will not email you for marketing purposes unless you have consented us to do so. 

Other reasons we may use your information include, because you have consented us do so, we have a legal obligation or because we have to fulfil contractual obligations.

Some examples of how we use your information can be found below:

  • You have given us your consent to use the information for a specified purpose, such as sending you marketing emails.
  • We have a legal obligation to use your information, for example, to claim Gift Aid.
  • We need to use your information to fulfil a contract with you, for example, suppliers and contractors.
  • We are using your information under legitimate interest to:
  1. To deliver our mission and vision
  2. To tell you about the work Shine is doing
  3. To notify you of news, research and developments relevant to your condition
  4. To invite you to events where you can meet and connect with professionals and peers
  5. To share good news and success stories from the Spina Bifida and Hydrocephalus communities
  6. To gather views on upcoming plans and projects
  7. To manage our financial transactions and prevent fraud
  8. To ensure we meet our regulatory requirements as a charity


2. What information we collect

Personal information is any information that can be used to identify you.  For example, it can include information such as your name, postal address, telephone number(s), email addresses, data of birth, IP address, credit/debit card details and information relating to your health and personal circumstances.

Data protection law recognises that certain categories of personal information are more sensitive.  These are known as ‘special category data’ and include information relating to health, race, ethnic origin, religious beliefs, genetics, and sexual orientation.  We collect special category data where there is a need to do so such as when we are giving you advice, to ascertain what services are relevant to you or to cater other services and support you.

2.1       Members

We recognise that all members should be able to access our services in confidence and we are committed to this principle.

Shine has three specific types of Membership

  • Disabled members – those with spina bifida and/or hydrocephalus who’s lives have been affected by anencephaly and encephalocele
  • Family/friends – this is a close member of the family including siblings and extended family members who support the member.
  • Associate members – professionals working in allied professions, i.e. medical, education etc. This may also include interested people who have supported Shine’s members, including former staff and committee members who sign up to become members.

If you are a member of Shine who accesses our services, we will usually collect the following information to enable Shine to provide an effective service to you:

  • Your/your child’s name
  • Your contact details (address, email address, telephone number(s))
  • Your/your child’s date of birth
  • Information relating to your/your child’s medical condition, education or other needs if appropriate


2.2          Supporters


If you are a supporter of Shine, for example you fundraise, make a donation, volunteer, or sign up for an event - we will usually collect the following information:

  • Your/your child’s name
  • Your contact details (address, email address, telephone number(s))
  • Your bank or credit card details (if any transaction is involved)
  • Why you have decided to support Shine.   We will never make this question mandatory and only want to know the answer if you are comfortable telling us.

2.3 Children’s Data

We will always seek consent from a parent/guardian before collecting information about children under the age of 16. This includes when a young person under 16 gives us their contact preferences and tells us they want to hear from us. Children under 13 cannot sign up to receive information from us.  However, we may contact children age 13 and over through their parent(s), or directly with the parent’s consent to make contact.

Our fundraising events have specific rules about whether children can participate and we make sure advertising for those events makes this clear and is age appropriate

2.4          Recruitment

If you are applying for a vacancy at Shine, we will usually collect the following information:

  • Your name
  • Your contact details (address, email address, telephone number(s))
  • Employment history
  • Qualifications

2.5          Suppliers and contractors

If you carry out work on behalf of Shine, we will usually collect the following information:

  • Your name
  • Your contact details (address, email address, telephone number(s))
  • References of your work
  • Your insurance details (public liability certificates)
  • Bank details, to enable payment


3. Where we collect information from about   you

We collect information in the following ways:

3.1       When you access services or give it to us DIRECTLY

You may give us your information in order to join Shine and use our services, book on to an event, tell us your story, make a donation, participate in fundraising activities, or communicate with us.

3.2       When you give it to us INDIRECTLY

Your information may be shared with us by independent organisations, 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 Shine and given your consent. You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

3.2       When you give permission to OTHER ORGANISATIONS to share or it is available publicly

You may have provided permission for a company or other organisation to share your data with third parties.  This may include NHS colleagues or local authorities

3.3       When we collect it as you use our WEBSITES OR APPS

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 are 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.

In addition, the type of device you’re using to access our website or apps and the settings on that device may provide us with information about your device, including what type of device it is, what specific device you have, what operating system you’re using, what your device settings are, and why a crash has happened. Your device manufacturer or operating system provider will have more details about what information your device makes available to us.

Shine websites and social media accounts may contain links to other websites. When you click on one of those links you are accessing a website that is not owned, operated or controlled by us or any of our affiliates. The operator of such a site may have its own privacy policy, which we encourage you to read carefully. The policy will govern the collection and use of your data on that site.

4.  How we use your information

How we use your information would depend on why you are providing it.  As an overview, we may use your information in the way set out below:

  • We’ll use your personal information to give you the information, support, services and products you ask for.
  • We use your information to gain a full understanding of your situation so we can develop and offer you the best possible service
  • We’ll use your personal information to claim Gift Aid on your donations
  • To manage our recruitment
  • Direct marketing
    • We’ll use your information to send you communications about our work and how you can help us, for example, information about our campaigns, volunteering, fundraising activities and how you can donate to us.
    • We rely on your consent for marketing and communications by electronic means – including text, email and social media.  We rely on legitimate interest for other means of marketing including post and live calls.
    • You can let us know if you would prefer not to receive these communications at any time by emailing [email protected] or by calling us on 01733 555988.

How we use your information to fulfil your requests and support you

4.1 To respond to or fulfil any requests, complaints, orders or queries you make to us

If you contact us directly, we will use the information you give to us to handle your query or request. This may include responding to your query or feedback, or sending your relevant information, such as health information or fundraising materials.

4.2 To process any donations you make, claim any relevant Gift Aid and maintain a record of your past financial contributions

We keep a record of any donations we receive for audit purposes, and as we are legally required to keep information related to Gift Aid.  We may need to use your information to prevent fraud.

We may receive this information when you contact us directly or indirectly when you give to us through a payroll giving agency or a third-party giving platform or website.

4.3 To provide you with information and support for any services, events, fundraising and campaigning activities or volunteering opportunities you sign up to

If you have completed a form or contacted us to register or enquire about a services, event or activity or campaign, we will consider this as a request to send you details. 

Where you provide contact details, we will provide information and support by post, phone, mobile messaging, email, social media and any other channels for which you have provided your details.

4.4 To manage our recruitment

When applying for a role with us either via our website or through an agency the personal data you provide as part of the recruitment process will only be held and processed for the purpose of the selection process. You will be asked to provide certain information including your name, contact details, employment history and qualification(s).  This information is mandatory for us to consider your application, communicate with you about your application and, where successful, follow up with references.  We may also view social media profiles of applicants, such as LinkedIn, to the extent that is relevant to your application.

Unsuccessful applicant data will be held confidentially for six months.

How we use your information to tell you about our wider work (marketing, fundraising etc)

4.5 To send you marketing communications by email, mobile messaging, or direct message on social media, where you have agreed to do this

Where you have provided an email address, mobile number or details of your social media profile(s) and consented to being contacted in this way, we will send you information by those channels.  This information could cover ways to give or raise money for us, to campaign for us, volunteer, and/or receive updates on our services.

4.6 To contact you by phone and post

Where it is appropriate and relevant, and you have provided us with your telephone number and postal address, we will occasionally write to you to tell you about ways to give or raise money for us, to campaign for us, volunteer, and/or receive updates on our services.  We do this as we consider it is a legitimate interest to promote our charitable cause and communicate with you about way you can support us. We will not contact you by telephone if your number is registered with the Telephone Preference Service, unless you have consented to receive calls from us.

4.7 Digital and social media marketing

Depending on your settings or the privacy policies for social media and messaging services like Facebook and Twitter, you might give us permission to access information from those accounts or services. For example, if we participate in Facebook’s “Custom Audience” program which enables us to display ads to our existing or potential supporters via Facebook. We provide personal information such as your email address to Facebook to enable them to determine if you are a registered account holder with Facebook. Our adverts may then appear when you access Facebook and on your Facebook feed. 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 read Facebook’s Data Policy.

We may use desk research, profiling and screening techniques to analyse your personal information to create a profile of your interests and preferences so that we can contact you with information relevant to you or to help us find others like you who might like to show their support. We do this because it allows us to target our resources more effectively, which donors consistently tell us is a key priority for them. We may make use of additional information about you, including geo- demographic information and measures of affluence, when it is available from third party sources. We may on occasion use third party suppliers to undertake these activities on our behalf and provide them with your information to the extent required.

Such information is compiled using publicly available data about you, for example addresses, listed Directorships, social media posts, newspaper articles or typical earnings in a given industry. This helps us understand the background of the people who do or may support us and helps us to make appropriate requests for gifts to supporters who may be able and willing to give more than they already do and/or leave us a gift in their will. Collating this publicly available information helps us better understand your motivations and preferences enabling us to deliver a more targeted and relevant donor experience. Additionally, it enables us to raise more funds, sooner, and more cost-effectively than we otherwise would.

4.8 Use of any images, videos, or other information you tell us about something you have done for us

If you share information about the fundraising or campaigning activities you have done for us, or your personal experiences, by post, email or over social medial, we may want to use this to help us promote our event, activities and/or services in the future.  We will obtain the necessary permission to use this information

5. Keeping your information up to date

We would appreciate it if you could let us know when your contact details change. You can do this by emailing [email protected] or by calling us on 01733 555988. 

6. Sharing and security of your information with other organisations

We would never share your information with third parties for their own purposes, unless this is explained to you at the time we collect your information, you give us permission to, or we are legally required to do so.

We will only share your details in exceptional circumstances or where legally required, for example where there are allegations of abuse, or risk of serious self-harm or a serious intention of harming someone else.

For example, we are legally required to provide your data to the following types of organisations:

  • HMRC if you have agreed to us claiming Gift Aid on your behalf
  • Law enforcement and regulatory bodies and authorities such as the police, the ICO, the Charity Commission or the Fundraising Regulator
  • Health and Safety authorities and/or professionals where we believe such disclosure is necessary and appropriate to prevent harm

We will never make children’s details available to third parties, other than when necessary as explained in other areas of this Privacy Policy.

6.1 Security of information which is shared

We restrict access to information that we hold about you and/or your child to ensure that it is only accessible by appropriately trained staff and volunteers who need to know the relevant information.

We ensure that there are appropriate technical controls in place to protect your personal details.  For example, our online forms are encrypted, our computer systems are protected and routinely monitored.

The Shine Health Direct service is run in partnership with Bullens Health Care.   Contact data is provided to Shine Health Home Direct to provide members with information about the service.   Bullens staff are honorary employees of Shine for the purposes of the contract and comply with all Shine’s data protection and confidentiality policies.

On occasions, we use external companies to process your details (name and address) on our behalf, for example to assist us with large bulk mailings such as Together magazine. We do comprehensive checks on these companies before we work with them and put a confidentiality agreement in place.

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

7. How long we hold your information

We will hold your information for a period of up to eight years from the end of your relationship with the charity in accordance with our Document Retention Policy. In some circumstances, this will be shorter, unsuccessful job applications will be destroyed after six months.

8. Your rights

Under data protection law, you have rights that we need to make you aware of.  The rights available to you depend on our reason for processing your information.

Your right of access – You have the right to ask us for copies of your personal information. This right always applies.  There are some exemptions, which means you may not always receive all the information we process. ICO - Right of Access

Your right to rectification – You have the right to ask us to rectify any information you think is inaccurate.  You also have the right to ask us to complete information that you think is incomplete.  This right always applies. ICO - Right to Rectification

Your right to erasure – You have the right to ask us to erase your personal information in certain circumstances. ICO - Right to erasure

Your right to restriction of processing – You have the right to ask us to restrict the processing of your information in certain circumstances. ICO - Right to Restrict Processing

Your right to object to processing – You have the right to object to processing if we are able to process your information because the process forms part of our public tasks or is in our legitimate interest. ICO - Right to Object to Processing

Your right to data portability – This only applies to information that you have given us. You have the right to ask that we transfer the information you gave us from one organisation to another or give it to you.  The right only applies if we are processing information based on your consent, or in talks about entering into a contract and the processing is automated. ICO - Right to Data Portability

If you would like to access the personal information we hold about you, write to us at Shine, 42 Park Road, Peterborough, PE1 2UQ, enclosing proof of your identity and a description of the information you would like to see. We do not accept these requests by email in order to ensure that we only provide personal data to the correct person. If there are any discrepancies in the information we provide, please let us know and we will correct them. We will make any changes requested within one month of receipt of the request. For complex rectification requests this period may be extended by up to a further two months.

9. Complaints

If you have any complaints about how we handle your personal data, please contact us so we can resolve the issue, there possible.  You also have the right to lodge a complaint about any use of your information with the Information Commissioner’s Office, the UK data regulator.  Where you have a complain about the way in which we have used your personal information in our fundraising, you can also complain to the Fundraising Regulator.

10. Changes to the Privacy Policy

We may update this policy to reflect changes in how we use your information.  You may wish to check this policy each time you provide us with your information. Where appropriate, we will provide you with notice of any significant changes to how we use your information.

This policy was last updated July 2019.