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Privacy Policy


Spina Bifida Hydrocephalus Scotland (SBH Scotland) is committed to protecting your privacy. This policy explains what happens to any personal data that you provide to us or that we collect when you visit our site and how we use cookies on this website.

By using our website, any of our fundraising, information or support services, including booking a stay at Rebecca Cottage, or providing us with any personal information we will assume you are agreeing to your information being used and disclosed in the ways described in this policy.

We will update this policy from time to time so please do review it regularly. This policy was last reviewed on 18th May 2018.

The links below can be used to navigate your way around this policy:

1) Who we are

2) Data Protection Act

3) What personal data do we collect

4) How do we collect information about you

5) What we do with the collected information

6) How we keep your data safe and who has access

7) Information sharing and disclosure

8) Storing your information

9) The accuracy of your information

10) Treating supporters fairly

11) Changes to the policy

12) Your rights

13) Privacy queries


Spina Bifida Hydrocephalus Scotland (SBH Scotland) provide a lifetime commitment of specialist support and information to all those with the life-long, complex disabilities of spina bifida and/or hydrocephalus, their family members, carers and a range of healthcare and educational professionals in Scotland. We raise money to make this extensive and vital service possible.

Access our 'Why we need your help?' page to find out more about what we do.

Spina Bifida Hydrocephalus Scotland is a trading name of the Scottish Spina Bifida Association. Registered as a charity in Scotland (number SC013328). We are also registered as a company limited by guarantee (number 213050).


We process our data under the General Data Protection Regulation (GDPR) which replaced the Data Protection Act. We take our data protection responsibilities very seriously and we ensure the personal information we obtain is held, used, transferred and otherwise processed in accordance with the regulation and all other applicable data protection laws and regulations including, but not limited to, the Privacy and Electronic Communication Regulations (PECR).

See section 12 on information about your rights.


The type and quantity of information we collect and how we use it depends on why you are providing it. Personal data is collected by SBH Scotland from members, supporters and customers of the charity.

Personal data is any information that can be used to identify you. It can include your name, date of birth, email address, postal address, telephone number, mobile telephone number, fax number, bank account details, credit/debit card details and whether you are a UK tax payer so that we can claim Gift Aid (please rest assured we do not collect information about your actual tax payments, just whether you are a tax payer).

Where there is legal basis under GDPR, and it is relevant to do so, SBH Scotland may store personal data relating to criminal convictions and offences.

Sensitive personal data is defined as data consisting of racial or ethnic origin, political opinions, religious or philosophical beliefs or trade union membership, genetic data, biometric data, data concerning health or data concerning a natural person's sex life or sexual orientation.

Supporters and Customers

If you have made a donation, taken part in a fundraising challenge, attended a fundraising event, signed up for email updates, registered for an online shop account, bought a product, booked a stay at Rebecca Cottage, volunteered with us or have contacted us for further information on SBH Scotland or fundraising for SBH Scotland we will collect relevant personal information about you.

We do not usually collect “sensitive personal information” about you unless there is a clear reason for doing so, such as participation in an event where we need health information to ensure we provide appropriate facilities for you (for example taking place in a high risk event) or depending on the level of volunteering we may need to complete a PVG for you.

Although an answer is never mandatory we may also ask your motivation for supporting or contacting us. We will always make it clear to you when collecting this information as to what information we are collecting and why.

Members of the Charity

Members of the charity, in the context of this Privacy Policy, are classed as all those who benefit from our services: those with spina bifida and/or hydrocephalus or related conditions and, where applicable, their parents, siblings, family members and carers.

In order to provide the best possible information and support service to you, our members, we may collect both ‘personal’ and ‘sensitive personal’ information about you.

When you first contact us for support, in order to provide this support, we will add basic personal information which you have provided to our secure database.

Sensitive personal data can include medical information about your physical and mental wellbeing as well as your condition(s). Particular care is taken when considering what sensitive personal data should be recorded and how it is stored. We only store this information once your permission has been given when we first meet/speak with you.

Many members also choose to fundraise or volunteer for SBH Scotland. In those instances the data you have provided to the fundraising team will be stored in a separate encrypted database. Data is not shared between the fundraising and member databases unless the information relates to a change of contact details or we are notified that communications are no longer required from us. At this stage you do not need to tell us the reason for this but it would be helpful for the organisation in case there is anyway we can improve further communications or services for others.


We collect information in the following ways:

  • When you give it to us directly as either a supporter, a customer or to register as a member of the charity
  • You may give us your information in order to sign up for one of our events, tell us your story, make a donation, purchase our product or communicate with us. Any forms you may fill in have clear marketing preference questions and we include information on how to request no contact (Opt-Out) from us. If you don’t want to hear from us, that’s absolutely fine, please get in touch to let us know and we will make sure your wishes are followed.
  • 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 SBH Scotland and have given your consent. You should check their Privacy Policies when you provide your information to understand fully how they will process your data.
  • When you give permission to other organisations to share it.

For members, you may have given permission to the NHS, school authority or any other agency currently working with you permission to give us relevant information so we can continue to effectively support you.

You may have given permission to third party organisations to share your data with other third parties, including charities. You may do this when you buy a product or service, register with a website that runs competitions or register with a comparison site. The information we get from those services depends on your settings or the responses you give, so you should regularly check and update them.

  • When we collect it as you use our websites
Like most websites, the and sites use 'cookies' to help us make our sites, and the way you use them, better. Cookies mean that a website will remember you. They’re small text files that sites transfer to your computer (or other device such as phone or tablet). The data which is captured and stored by cookies is not personally identifiable information, but merely a log of the user's IP address which is automatically recognised by the web server. This can make interacting with a website faster and easier – for example by automatically filling your name and address in text fields. This information can also be used by SBH Scotland to record visitors to our sites, volumes of usage, support retargeted advertising or help to measure the effectiveness of any online advertising we may do.

Please read our Cookies Policy for more details on the cookies we use, how they work and how you can disable them should you wish to do so.

Our websites contains links to other websites belonging to third parties. All links to other websites are provided as a service to website visitors, but such linking does not constitute endorsement of those sites by Spina Bifida Hydrocephalus Scotland, and as such we are not responsible for the content of external websites. We encourage you to read each third party site’s privacy policies carefully.

  • When you opt in to receiving e-updates
When you opt-in to receiving e-updates from SBH Scotland your email address and/or your first/second name are added into our private data list with a secure online service called Mailchimp. Mailchimp, for some of its processes uses cookies and it aids us in the design of our email newsletters, to send out bulk emails, share them on social networks and integrate with our other services.

Mailchimp automatically places single pixel gifs, also known as web beacons, in every email we send out using their system. These are tiny graphic files that contain unique identifiers that enable Mailchimp and SBH Scotland to recognise when our subscribers have opened an email or clicked certain links. These technologies record each subscribers email address, IP address, date, and time associated with each open and click for a campaign. Mailchimp use this data to create reports for us about how an email campaign performed and what actions subscribers took.

Every email we send through the Mailchimp system has a clear ‘unsubscribe’ option at the bottom.

Read the full Mailchimp Privacy Policy for details.

  • When you interact with our social media channels
Depending on your settings, or the privacy policies, for social media and messaging services like Facebook, Instagram, Pinterest or Twitter, you might give us permission to access information from those accounts or services. We advise you to check all the privacy policies and settings of social media sites/apps that you use.

By submitting any content to any of Spina Bifida Hydrocephalus Scotland’s ‘public’ social media pages including, but not limited to, Facebook, Twitter and Instagram, via posts, comments, photos, links, etc., you understand that this information is publicly available, and that Spina Bifida Hydrocephalus Scotland may use this information in internal and external publications and other communications.

Content posted in ‘closed’ or ‘private’ SBH Scotland Facebook groups will NEVER be used by SBH Scotland in social media, publications and other communications without the full permission of the commenter. Please note that it may be possible for other members of the closed groups to share or save your posted content.


We process data under the basis of legitimate interest whilst making sure to adhere to all other e-privacy laws. Whenever we process your Personal Information under the ‘legitimate interest' lawful basis we make sure that we consider your rights and interests and we will not process your personal information in ways that you would not reasonably expect or where there is no justification for doing so.

This means we may write or call you occasionally for administrative purposes, with relevant direct marketing on a fundraising topic, event or service which we feel would benefit, or be of interest to you, or just to update you on the progress of the charity.

We will only contact you about our work and how you can support SBH Scotland by email or text message, if you have agreed for us to contact you in this manner.

We do not sell or share personal details to third parties for the purposes of marketing. But, if you attend an event run in partnership with another named organisation your details may need to be shared. We will be very clear what will happen to your data in those instances.


Supporters/Customers, with your permission SBH Scotland may collect your personal information for a range of reasons including:

  • to provide you with the fundraising products or information you have requested
  • to process any donation(s) we may receive from you, including Gift Aid
  • to process a holiday booking at Rebecca Cottage
  • to ask you to help our charity with financial and non-financial support, but always in accordance with our supporter commitment;
  • to manage your marketing preferences and interests;
  • tailoring the information you receive to deliver you online targeted advertisements that are more tailored to you based on your browsing activities and inferred interests (“Interest Based Advertising”)
  • to provide you with information about our work or our activities funded with your support
  • to send you any items you have ordered through our shop;
  • to invite you to participate in surveys or research;
  • to keep a record of your relationship with us
  • for administration purposes or part of an existing fundraising conversation e.g. we may contact you about a donation you have made, or event you have taken part in or registered for;
  • for internal record keeping, such as the management of feedback or complaints;
  • to analyse and improve the services we offer;
  • to send you occasional email updates about our charity and fundraising activities;
  • the use of IP addresses to block disruptive use, to record website traffic or to personalise the way our information is presented to you to identify your approximate location


Members, with your permission SBH Scotland may collect your personal information for a range of reasons including:
  • to provide you with the information and support services you have requested
  • to manage your preferences and interests; tailoring the support and services you receive
  • to provide you with information about our work or our activities
  • to invite you to participate in surveys or research;
  • for statistical research (anonymous data)
  • to keep a record of your relationship with us
  • for internal record keeping, such as the management of feedback or complaints;
  • to analyse and improve the services we offer;
  • the use of IP addresses to block disruptive use, to record website traffic or to personalise the way our information is presented to you to identify your approximate location
  • to update your SBH Scotland health and care records

Please remember you can change your communications preferences at any time by contacting the Data Protection Officer at SBH Scotland, The Dan Young Building, 6 Craighalbert Way, Cumbernauld G68 0LS. Telephone: 03455 211 811 or Email.

If you ask us not to use your information for future communications we will respect that. However, we will retain your details on a suppression list to help ensure we do not continue to contact you.


Sharing your story.

Some people choose to tell us about their experiences with spina bifida or hydrocephalus or their engagement with fundraising activities to help further our work. They may allow us to share their story in the press and media. This may include them sharing sensitive information related to their health and life, as well as their contact information.

If we have the explicit and informed consent of these individuals, or their parent/guardian if they are under 18, this information may be made public by us in materials promoting our campaigning and fundraising work, in documents such as our Annual Report and in funding applications.


We ensure that there are appropriate technical controls in place to protect your personal details.

If data transfer in necessary it will only be done via encrypted services.

All our databases are on secure servers and are routinely monitored.

For all areas of our websites which collect personal information, we also use a secure server. Although we cannot 100 per cent guarantee the security of any information you transmit to us online, we enforce strict procedures and security features to protect your information and prevent unauthorised access.

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, volunteers and contractors.

In some circumstances we use external companies to collect or process personal data on our behalf for instance mailing houses are used to post out our annual Source magazine. We do comprehensive checks on these companies before we work with them and make sure they have appropriate licences and policies in place.


We will not sell or swap your information with any third party.

There may be occasion when we enter into research with external organisations such as the NHS. If at any point there is a reason why statistical information should be shared with these third parties the data will be provided in an anonymous form so that individuals cannot be identified.

We may need to disclose your details if required by law 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.


Credit, Debit Card payment information

If you use your credit or debit card to donate to us, buy something or pay online or over the phone, we will ensure that this is done securely and in accordance with the Payment Card Industry Data Security Standard. Find out more information about PCI DSS standards by visiting their website

We do not store your credit or debit card details at all following the completion of your transaction. All card details and validation codes are securely destroyed once the payment or donation has been processed. Only those staff authorised to process payments will be able to see your card details. If we receive an e-mail containing any credit or debit card details, it will be immediately deleted, no payment will be taken and you will be notified about this.


Although most of the information we store and process stays within the UK, some information may be transferred to countries outside the European Economic Area. This may occur if, for example, one of our trusted partner’s servers are located in a country outside the EU. These countries may not have similar data protection laws to the UK however, we will take steps with the aim of ensuring your privacy continues to be protected as outlined in this privacy policy.

We will keep your information for as long as required to enable us to operate our services but we will not keep your information for any longer than is necessary. We will take into consideration our legal obligations and tax and accounting rules when determining how long we should retain your information. When we no longer need to retain your information we will ensure it is securely disposed of, at the appropriate time.


We aim to ensure that all information we hold about you is accurate and, where necessary, kept up to date. If any of the information we hold about you is inaccurate and you advise us we will ensure it is amended and updated as soon as possible.


We recognise the importance of treating all our supporters fairly and protecting those in vulnerable circumstances. SBH Scotland follow the Institute of Fundraising’s ‘Treating Donors Fairly’ policy abiding by the 4 key principles of respect, fairness, responsiveness and accountability.

Our aim is to provide a foundation of awareness and knowledge which enables fundraisers to respond appropriately to people in vulnerable circumstances, putting the needs of the individual first, above and beyond securing a donation. We believe this helps to support our staff and fundraisers who come into contact with supporters in providing high quality customer care, ensuring anyone donating to the charity is in a position to make a free and informed decision.

Under 16’s. If you are aged 16 or under, and would like to participate in an event, make a donation or get involved with us, we will check with you that you have your parent/guardian’s permission before giving us your personal information. When we collect information about a child or young person, we will make it clear as to the reasons for collecting this information and how it will be used.


This policy replaces all previous versions and is correct as of May 2018. We will regularly review and update this Privacy and Data Protection Statement and will update, modify, add or remove sections at our discretion so we would ask you to regularly check back and make sure that you are in agreement with any changes made. We will always tell you in this section when the last changes were made.

Your continued use of our website, any of our services and/or the continued provision of personal information after we have made changes to these terms will be taken to mean you are in agreement with those changes.


You have the right to:

  • request a copy of the information we hold about you
  • update or amend the information we hold about you if it is wrong
  • change your communication preferences at any time
  • ask us to remove your personal information from our records
  • object to the processing of your information for marketing purposes; or raise a concern or complaint about the way in which your information is being used.
If you wish to find out more about these rights, obtain a copy of the information we hold about you or change your communication preferences please contact the: Data Protection Officer, Spina Bifida Hydrocephalus Scotland, The Dan Young Building, 6 Craighalbert Way, Cumbernauld G68 0LS. Telephone: 03455 211 811 or email


If you have any questions or queries about this Privacy and Data Protection Statement, please contact our Data Protection Officer using the above address and contact details.

Support us

Because of you we provide a lifetime commitment of support. Please continue to support us or donate today. Thank you.

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