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Privacy and Cookies Policy

Please read our Privacy Policy below which also contains information about how we use cookies

Privacy and Cookies Policy

The Brain & Spine Foundation (BSF) is committed to protecting your privacy. The purpose of this statement is to explain how BSF process your data, whether you are using our helpline service, interested in fundraising, making a donation or just browsing our website. 

The Brain & Spine Foundation is a registered charity (1098528) and a company limited by guarantee (4432677). We have one office in London, a team of around 15 staff and a large number of volunteers working to raise funds, increase awareness and support people affected by neurological problems around the UK.

BSF takes appropriate technical and organisational measures to keep your data safe.  We do use “cloud-based” applications to process some types of personal data and therefore your data may be stored outside of the European Economic Area. These countries may not have similar data protection laws to the UK. Where we engage processors from outside the EEA, we ensure that they are certified under the EU-U.S Privacy Shield framework or are otherwise bound to uphold EU Data Protection laws. By submitting your personal data, you are agreeing to this transfer, storing or processing.

More information about the Privacy Shield framework is available here:

As the service we provide changes, we may need to alter our privacy policy from time to time, so users are urged to check this policy regularly for changes. In the case of any significant alterations to the way we use your data, we will notify you. If you have any queries about this statement please contact the Data Protection Officer at BSF, Fourth Floor, CAN Mezzanine, 7-14 Great Dover Street, London SE1 4YR or email at [email protected].

If you use BSF’s services

We provide helpline services and online support groups to support individuals and their families affected by neurological conditions. The Helpline team collect sensitive personal data about your health when you speak, email or write to them. They will use this information to answer questions and provide information and support. Any notes taken when they talk to you are shredded at the end of the call. Copies of emails and letters are securely stored for reference for 12 months. After this period they are permanently deleted or shredded.

We also collect audit information such as age, gender, the condition you enquired about, and your location. This is to monitor and evaluate our services. Audit information is stored anonymously and securely. If it is shared with third parties, for example in reports about our work to funders, it is only done in aggregate, so that your individual data will never be identifiable.

We don’t record your phone calls to the helpline but from time to time helpline staff may listen in to calls for training or support purposes. This would be explained to you at the start of your conversation, and if you would prefer the other person not to be present, please tell us.

If you request a booklet or any other information, we will ask if you would like to stay in touch with us, so you receive other information about our work. If you agree, we will retain your contact details. If you don’t agree, these details will be destroyed after the information has been sent to you.

Any personal information you provide via our helpline services or post on our social media channels will not be passed on to anyone else without express permission except in exceptional circumstances in line with our safeguarding policy or to comply with the law.

We would only need to say or do something if:

  • You directly ask us to pass on information about you to someone else
  • We believe your life or someone else’s life is in immediate danger
  • You tell us that you’re seriously harming another person
  • You identify someone who has or says they are going to harm to someone else
  • A terrorist threat is reported
  • We are required to do so by law
  • You compromise the delivery of our service or threaten the safety of our staff

Our online support groups and forum provide a space for people to get in touch with each other and to provide mutual support. When you join a group you are agreeing for that platform to have access to your data and you should check the privacy policy of the relevant provider (currently Facebook and Health Unlocked) as well as your own privacy settings. You should remember that any information you choose to share can be seen by other users of the group. We are not responsible for the privacy of any identifiable information that you post in our online support groups and forum.

If there are any incidents in relation to use of the online support groups and forum, we will record details of these in line with the group guidelines to support future moderation. These records may include your personal details and will be held in a secure file and destroyed after 12 months.

If you volunteer with BSF

If you are interested in volunteering with BSF, you will be asked to give us your personal details on a volunteer form or in a CV. This includes anyone who contributes to development of our information resources.

We will use this information to tell you about and organise any volunteering opportunities, to assist you with any queries you might have regarding your volunteering application and ask you about your experience of applying to volunteer with us. We will keep in touch with you through our monthly e-newsletter, in order to keep you up to date with the charity’s work, although you may opt out of this at any time through a link at the bottom of the email.

BSF will keep your personal information confidential, unless we are required to disclose it in connection with a police investigation and/or we have reason to believe that you may present a risk of harm to others. We will provide a reference on request. 

If you donate to BSF

Developing a better understanding of our supporters through their personal data allows us to make better decisions, fundraise more efficiently and ultimately helps us to reach our goal to help more people affected by neurological conditions across the UK.

When you donate money to BSF, we will collect and process information about you. This information may include your financial details, name, email address, postal address, telephone/ mobile number, date of birth, information about your work and other interests. Some of this information may come from external sources including publicly available information.

We may use your information for a number of purposes including:

  • To process donations you have made;

  • To update you about our work and activities.  From time to time these updates may include requests for financial support.  

  • For administration purposes (for example, we may contact you regarding a donation you have made or the event you have registered for);

  • To claim gift aid on your donation, if you have agreed that we can do so;

  • For internal record keeping, including the management of any feedback or complaints;

  • To invite you to participate in surveys or research (this is voluntary)

  • To send you appropriate communications based on your interests; we may segment data and develop profiles for individual donors as part of this.

When you make a donation via our website, the data is stored on a secure server. We also take appropriate measures to ensure the information disclosed to us is kept protected and up to date.  You can also donate to BSF via a number of online providers such as PayPal, Worldpay, Virgin Money Giving or Just Giving websites. These providers have their own separate privacy statements, which we recommend that you read before using. 

Ways we may use your personal information

If you donate to us, we will ask you if we can stay in touch and keep you up to date with our fundraising activities and the work of the charity. We will also ask you how you would like us to stay in touch – by mail, telephone or email. 

  • If you have given us your postal address, we may send you direct marketing by post unless you have told us that you would prefer not to receive information in this way.

  • If you have given us your telephone number, we may telephone you about our work unless you have told us that you prefer not to be contacted in this way.

  • If you are registered with the Telephone Preference Service, we will only call you if you have told us that you are happy to receive telephone calls from us.

  • If you have given us your email address, we will add you to our e-newsletter list to keep you up-to-date with the work of the organisation, unless you have told us you don’t want to receive this. We will tell you how you can opt out of further communications.

To improve our communications with you and the information we provide to you through our website, services and products, we may use profiling and screening methods to increase our understanding of our supporters and provide a better service and experience for you.

We may carry out targeted fundraising activities using profiling techniques based on the information we hold about you. We may work with third party organisations who provide additional insight, this may include wealth screening information or identifying general information about you that is publicly available.

This information can be included in our records so that we can make appropriate requests to you based on what may interest you and what is appropriate to ask you.

In some cases we will use your personal information where we have your consent. There will be times when we will process your personal information under the lawful reason called ‘legitimate interests’. This means that we may process your information because there is a legitimate interest for BSF to do so to help us achieve our mission to improve the quality of life of people affected by neurological problems. We also know you have taken an interest in this vision which is why we have your personal information. For example we might process your information to write to you about our work, or to conduct research to understand our supporters more and to improve our services.

As part of processing your personal information under the lawful basis of ‘legitimate interests' we will make sure to take into account your rights and interests and will not process your personal information if we feel that there is not a balanced reason.

You have the right to object to any of these methods of contact and we will give you easy ways to opt out of any contact at any time. See below section for more information about keeping your details up to date.

We work with some event / challenge organisers and fundraising platforms that collect your personal information as part of the registration process (e.g. Skyline, Virgin Money Giving and Just Giving).  If you have consented to contact from BSF as part of registration, your contact details will be passed to us and we will contact you as referenced by the third party supplier.

From time to time, BSF works with fundraising agencies, which provide data processing services.  For example, this may be a company that provides printing and postage services to send postal communications to our supporters.

In such cases we may share your personal information with these suppliers.  When we do this, we do not give these organisations any rights to use your personal information (or contact you) except in accordance with our instructions. We also require these third parties to comply with Data Protection legislation, and we make sure that appropriate safeguards are in place.

Where personal information is passed from BSF to our contracted suppliers, this is transferred securely and is only used for the specific purpose as confirmed by our agreement with them and they agree to delete your information after they have completed this work.

If you have made a Gift Aid declaration, we may disclose the information you have provided as part of the declaration to HMRC for the purpose of reclaiming Gift Aid on your donation(s).

We do not ever share or sell personal information to third parties for marketing purposes.

If you have indicated that you do not wish to be contacted, we will retain your details on a suppression list to help ensure that we do not continue to contact you.

Keeping your information up to date

If you’ve provided us with your details, but decide later that you no longer want to receive information from us or your contact details have changed, simply let us know by contacting:

Data Protection Officer, BSF, Fourth Floor, CAN Mezzanine, 7-14 Great Dover Street, London SE1 4YR or by emailing [email protected] or telephone: 020 3096 7880

Using our website

Cookie policy

What are cookies?

Like most websites, we use cookies. Cookies are tiny pieces of data saved on your computer or mobile device. There are several types of cookie and they each have different functions or uses.

How do we use cookies?

We use cookies for a variety of reasons:

(a) Essential cookies – these are required for the operation of our website, for example to enable you to log in to secure areas of the website or make use of a shopping cart and e-payment services.

(b) Analytic/performance cookies – these allow us to recognise and count the number of visitors and to see how visitors move around our website when they are using it. This helps us to improve the way our website works, for example, by ensuring that users are finding what they are looking for easily.

(c) Functionality cookies – these are used to recognise you when you return to our website so that we can personalise our content for you and remember your preferences, e.g. whether you are signed up to email alerts.

(d) Targeting cookies – these record your visit to our website, pages you have visited and links you have followed. We may use this information to make our website and the advertising displayed to you more relevant to your interests, and may share this information with third parties for this purpose.

Third party websites and social networks

If you click on a hyperlink from our website to any third party websites (e.g. if you ‘share’ content from our website with friends or colleagues on social media), you may be sent cookies from these third party websites. They will do so pursuant to their own policies on privacy and cookies. It’s a good idea to check their privacy policies to fully understand their use of cookies.

Some of the content on our website is provided by third parties. This includes but is not limited to: Google Maps for interactive mapping, YouTube or Vimeo for hosted video and Flickr for images. When you visit a page containing content from one of these sites a cookie may be set. We do not have any control over these cookies and they will be set pursuant to the third party’s own policies on privacy and cookies.

Disabling cookies

By using our website you consent to our use of cookies as updated from time to time and the cookies we use will be stored on your device (unless rejected or disabled by your browser).

Internet browsers normally accept cookies by default. However, it is possible to set an internet browser to reject cookies. If you do not accept our use of cookies as set out in this policy, please set your internet browser to reject cookies. This may impair your ability to use our website so that some features may not work.

Changes to this policy and further information

We may update our use of cookies, and this policy, from time to time, so please check this policy regularly.

You can find out more about cookies generally and how to disable them at

If you subscribe to BSF’s e-newsletter or single issue emails

You can sign up to receive our monthly e-newsletter, which includes information about BSF services and events, the latest research into neurological conditions, other neuro news and fundraising information. You can sign up in a variety of ways including through our website, when making a donation, at events or via other methods. We will ask you to give us your name and email address and we may ask for other personal data depending on the context.

Your contact data is stored with our third party email service provider, MailChimp. We will only use your contact details to send you the information that you have requested from us.

If you are in touch with BSF for other reasons such as volunteering or making a donation, you should also refer to the relevant section of this privacy statement.

How to unsubscribe from receiving e-newsletters

Should you wish to stop receiving emails from us, you can unsubscribe directly through an Unsubscribe link provided within every BSF e-newsletter. It is usually located at the bottom of the email. By clicking this link, you will be automatically unsubscribed from all future e-newsletters.

How to notify us of a change in details

If your personal details change, please help us to keep your information up to date by contacting us to let us know.

Do we use email tracking?

BSF uses MailChimp, which is a web based email service provider, to send out mass emails such as our e-newsletters. Emails sent by Mailchimp use email tracking technology to help provide you with the best experience we can. The technology places an invisible single pixel gif image (also called a web beacon) in emails to detect when they have been opened and when links within emails have been clicked. Web beacons allow us to collect information about when you open the email, your IP address, your browser or email client type and other similar details. We use this data to create reports about who has or hasn’t opened emails or clicked links and this information helps us to improve our email content so you receive more useful and relevant information from us.

Survey responders

If you take part in a survey run by BSF you will use an online service called SurveyMonkey which holds data in the EU, and is signed up to the EU-US Privacy Shield and Swiss-U.S. Privacy Shield. SurveyMonkey may share information with third parties. For more information, read SurveyMonkey’s Privacy Policy. We will hold survey data for 12 months after which the raw data will be deleted and an anonymised summary retained for future reference.

We will only contact you following a survey if you have given us your consent and will only display your responses publicly (for example in funding applications or on our website) if you have told us that we can do so.

If you want to complain

BSF aims to support our service users to the highest possible standard at all times. To help achieve this, we encourage anyone who is not completely happy with the service they have received in any aspect of our work to let us know immediately, using the complaints policy which is available on the website or by contacting the office.  

It is important that you give as much information as possible in order to fully investigate your complaint. Your information will not be passed on to anyone outside of BSF unless absolutely necessary, in which case we will let you know before we do so.  You can read the full Complaints Procedure here.

The information relating to your complaint will be stored for reference in a secure location and will be destroyed after 12 months.

Right of subject access

You have the right under the Data Protection Act 1998 to ask for a copy of the information we hold about you and to have any inaccuracies in your information corrected.  If you wish to make a subject access request we will ask you to:

  • Put the request in writing, to the Data Protection Officer, Brain & Spine Foundation, Fourth Floor, CAN Mezzanine, 7-14 Great Dover Street, London SE1 4YR.
  • Provide proof of identity including your name and postal address.

For your information we will only send a response to a subject access request to you by registered mail at a postal address. It will take up to 28 days for us to provide this information to you in this way.

You should also note that if we are unable to verify your identity, for example if you contact the service anonymously or use a different name to do so, it may not be possible to provide you with the information requested.