The Multiple Sclerosis Trust takes great care to preserve your privacy and safeguard any personal details you give to us, whether through our website or by any other means. This privacy notice explains how we collect and use your information.

The main aims of this privacy notice are to let you know:

  • how to get the information you want from us
  • the options for how we communicate with you
  • how the MS Trust ensures that your personal details are well looked after
  • that we will deal with any issues with your data efficiently and effectively.

This helps to ensure that we can offer you a high quality, consistent service.

You can change your communication preferences yourself at any time on our Keeping you up-to-date page.

The Multiple Sclerosis Trust and our education and trading companies (MS Trust (Education) Limited and MS Trust (Trading) Limited) are committed to protecting your privacy, both online and offline, and to that end we follow the requirements of the Data Protection Act 2018, and the seven principles of the UK General Data Protection Regulation (UK GDPR). The MS Trust is registered with the Information Commissioner's Office under the Act as a Data Controller (Z5773463B).

This privacy notice applies to all personal information collected by the MS Trust during the course of our activities, including fundraising, communications and service delivery. This includes the MS Trust websites and associated sites operated by us. This policy covers data stored electronically and on paper, and includes financial data and any personal information collected through enquiries, orders, subscriptions, surveys, events and donations.

By using our website or providing us with your personal information you are agreeing to this notice. We may update the details of this notice at any time, so please check it regularly.

If you have any questions about how we capture, store and use your personal information, please contact our Data Protection lead at the MS Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET, email, or telephone 01462 476700.

If you think we may have made a mistake in our work relating to your personal details or indeed any other aspect of our work and want to complain to us, please read our complaints procedure.

What information do we collect?

Personal information is any information that can be used to identify you. For example, it can include a combination of information such as:

  • your name
  • date of birth
  • email address
  • postal address
  • telephone number
  • credit/debit card details
  • images
  • your connection to other people or organisations that use our services 
  • as well as information relating to your health or personal circumstances
  • recordings of phone calls to our Enquiry Service.

We may collect personal information from you when you ask about our activities, register with us, (e.g. create an online account), order products and services from us (such as publications and newsletters), use our services, (e.g. by contacting our Enquiries Service), make a donation to us, fundraise on our behalf, attend one of our events, or otherwise give us personal information.

We may also obtain personal information about you from other sources, such as publicly available data and from other online fundraising platforms (Virgin Money Giving, for example). They will only be able to share your personal information with the MS Trust with your permission.

The MS Trust endeavours to always collect and use your personal information in a visible and transparent way without assumption or prejudice.

To understand how we use the personal information we gather about the communications devices you use, such as IP address (the location of the computer on the internet) and cookies, please see our How we use cookies page.

Our online (paid search) advertising is anonymously targeted at those websites we think will be of interest to people with MS or will attract new supporters to us. We do not store data received in this way and we place ads according to anonymised online behaviours and interests (using cookies). 

When using Facebook ads we follow their strict advertising policies. We may use Facebook’s demographic data to target ads such as region, age and areas of interest. We may also use ‘likes’ on our page or other anonymised data using cookies. We do not upload any personal data that we hold to Facebook.

We do not currently advertise on Twitter but should we change this we will update our policies to follow the same level of protection.


The MS Trust treats your contacts with us as confidential unless there is a safeguarding or legal reason to do otherwise. In this instance, we may have to pass this information onto a third party such as the emergency services.

To maintain this confidentiality, we recognise your rights as follows. You may:

  • choose what information you get from us and the way that we send it to you.
  • tell us at any time to change what you get and how you get it from us.
  • have errors in any personal information we hold about you corrected.
  • request for us to erase or destroy the information we hold on you.
  • have access to a copy of the personal information we hold about you.

You can change your communication preferences yourself online using the Sign up for updates page. You can also contact us on 01462 476700 and we will be able to help.

To ask us not to use your personal information, have it corrected, erased or to get a copy of it, contact us on 01462 476700 or  Alternatively you can contact our Data Protection team by writing to MS Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET for the attention of The Data Protection team.

How do we keep your information secure?

All personal information held by the MS Trust is done so securely and with rigorous procedures in place to ensure that your privacy and the security of your information is maintained.

We take precautions to prevent the loss, misuse or unauthorised change of any personal information you give to us.

We may communicate with you by phone, post, social media or email. These communication channels are not fully secure means of communication, and while we do our best to keep our systems and communications protected we cannot guarantee their security.

We make no representations about any other websites, and when you access any other website through a link on our website (including sites such as our Virgin Money Giving page, our Christmas card shop and social media sites such as Facebook and Twitter) you should understand that it is independent from us and that we have no control over that website or the way your personal information is collected through those websites.

How do we use your information?

There are different reasons why we might ask you for your personal information. We use your information to:

  • give you the information, support, services, or products you ask us for.
  • send you communications about MS, our work and how you can help us, for example, details of our information, events campaigns, volunteering opportunities and fundraising activities. 
  • carry out internal administrative actions (such as our accounting and record keeping), and to let you know about changes to our services or policies.

To communicate with you, we will:

  • use your email address only with your permission (consent) and only for the reasons set out when you gave us your details (these could include updates on MS, our work, events, how you can get involved, our campaigns and appeals).
  • use your postal address to send you requested publications, and to help us meet our legitimate charitable objectives our quarterly newsletter – Open Door – and from time to time updates on our work, events, how you can get involved, our campaigns and appeals, unless you tell us not to.
  • enable you to change your contact preferences and/or unsubscribe from communications at any time, with simple one-step instructions of how to do so (set out in 3. Confidentiality)
  • not use your personal details to contact you for reasons other than the above communications.
  • not retain the information you have provided for any longer than is necessary as set out in our data retention policy and we will review the information we hold on a regular basis as part of this.

To enable us to correct any information we have recorded about you, and thus carry out a request you have made, we will:

  • check mailing data against public mailing databases to identify people that have moved away and changes of address, and we will contact you for specific consent before continuing to use a new address.
  • use internet searches etc to allow us to rectify partial or incorrect address details so that we can carry out your request to receive information from us.

We will use any information that we hold to:

  • get a general understanding of MS in the UK so that we can improve and develop the activities and services of the MS Trust for people affected by MS.
    • We may do this by combining your information with other information (for example, from public records, demographical trends) to analyse the data we hold in order to identify a) the support needs within a given area / demographic or b) the fundraising potential with a view to reaching out to new supporters. We do this internally and anonymise the personal information we use where possible.
  • gain an understanding of your situation so we can develop and offer you the best possible personalised services and communications about MS and for fundraising purposes or respond to your requests.
    • We may use your personal information to look into, and respond to complaints, legal claims or other issues raised with us.
    • We will use your personal information to claim Gift Aid on your donations, where the criteria for doing so are sufficiently fulfilled and you have indicated that we may do so (and until you tell us we no longer can).
    • We will look at our records to assess projects which could be of interest to you, and to personalise our approach as to how we communicate with you.
  • assess the quality and impact of our services and to develop new products.

We may also analyse your personal information to predict future levels of donation. Finding major donors is a lawful legitimate interest under both the Data Protection Act and the General Data Protection Regulation. How we collect and use data in respect of our major donor list is clearly defined in this Privacy Policy.

The MS Trust may collect publicly accessible data on individuals we believe are capable of making or influencing a charitable donation of £5,000 or more. These individuals are typically in the top 1%-3% by wealth in the UK and would reasonably expect to be contacted by charities where a common interest is revealed from the data available. Major donors expect not-for-profit organisations to be well informed as they are financially aware, busy individuals who would expect research to be carried out on them before any approach for a major donation was made.

The privacy rights and interests of the data subject are not negatively affected; the data used is already easily accessible within the public domain. The interests of the MS Trust and the individual are closely aligned. A Data Protection Impact Assessment has been completed to ensure that the data subject’s rights are considered and protected.

We may also use your personal information for other purposes which we specifically notify you about and, where appropriate, obtain your consent. 

Email, text, social media and telephone

In line with the specific legislation related to the above Privacy and Electronic Communications Regulations (PECR), where you have contacted the MS Trust through social media or email, any email response will give you the opportunity to stay in touch with the work of the MS Trust. We will only use your email address to contact you about your original enquiry unless you consent for us to use it for another purpose, eg our e-newsletter, or e-alerts.

The MS Trust does not undertake any telephone fundraising or marketing. Where telephone numbers are captured, it will only be used to follow up with you about your enquiry or if there is an issue with your enquiry or transaction.

You can text donations to the MS Trust. Our partner for Text-to-Give is Just Giving. No personal data is collected by us through this service, it is anonymous unless you specify that you want your contact information to be passed to us.

From time to time, we may use a different Text-to-Give supplier where telephone numbers are supplied to the MS Trust. This will only be when there is a specific reasons for us to need your phone number. Should we ask you to text to donate to us in this way we will tell you that we will be given your number and what we will do with it. Should you go ahead with this text donation the MS Trust will only use the telephone number you give to us for the sole purpose that it was offered. The MS Trust does not send outbound marketing texts using mobile numbers held on our database.

Financial Information

We will only collect financial information in order to carry out financial transactions such as debit/credit card donations. We will not retain your financial details on our database unless it is for the purpose of a regular donation via Direct Debit. In such cases, you are covered by the Direct Debit Guarantee. Access to this information is restricted to staff members with finance responsibilities.

Our credit card processing is fully compliant with the Payment Card Industry standard.

We retain the date, amount and purpose of any gifts or payments you have made to us for audit and tax purposes, and so that we can acknowledge your gifts and cumulative giving.


At the MS Trust we produce a wide range of materials to support people affected by MS, to tell them about our services, to promote events and for fundraising purposes. To make these materials interesting, we use photographic images (moving and still) and personal stories.

We only use one to one interview images and videos with the informed consent of the people involved.

Photographs and video taken at MS Trust events will be held and used by the MS Trust without seeking individual permissions. Clear signage will be used at all MS Trust events to ensure that participants are aware of this and are able to tell us if they do not want to be included.

When we are filming and taking photographs in public spaces we will try to make it clear that we are doing so as a matter of courtesy, and you can ask us not to use or remove you from any images we do take.

Please tell us if we use your image and you no longer want us to do so. We will stop all future use of the image and remove it from our website. If it has been used in a publication we will not be able to remove it from existing print copies but will ensure it is removed from future versions.

The copyright of any material which is generated as a result of a photographic session with the MS Trust shall be the property of MS Trust.

Who do we share your information with?

We will not swap or share your details to any third parties, with the following exceptions:

  • Where necessary to provide a service using trusted service providers (our agents) who are authorised to act on our behalf (our mailing house to send out information for example)
  • Where necessary to complete a transaction (eg our fulfilment house for Christmas card sales)
  • Where we are legally required to do so (eg the audit of Gift Aid donors by HMRC)
  • In the instance of there being associated organisations who work on our behalf, or with whom we work in partnership to deliver and improve services for people living with MS. This includes organisations who fundraise on our behalf (e.g. Unity Lottery).

We will not sell your details to any third parties.

Contracts and/or specific Data Agreements are put in place with all suppliers where personal information is exchanged to ensure that the MS Trust remains in control of how the information is used and for how long it can be used.

We may also share information with our financial and legal advisers for the purposes of obtaining advice and protecting our legal rights.

Sensitive Information

As a charity which supports people with MS, we will ensure that we use any sensitive information you provide to us in an appropriate way.

We will:

  • keep information that is recorded by our Enquiry Service for a period of 6 years (or 6 months in the case of recordings of phone calls to the Enquiry Service) unless you let us know you do not want us to keep this data. This may include special category data such as health information. It will only be accessible to specific members of staff who are trained to handle such information.
  • record information regarding the nature of your enquiry for statistical purposes, such as whether it related to diagnosis, drugs, symptoms, care etc.
  • not record identifiable information that relates to a third party, given in the course of any conversation. In other words, if you talk to us about a specific person who has MS, but we do not have their permission, we will not record detailed information about them.
  • record your link to MS for statistical purposes, e.g. has MS, has friend with MS, has MS in family or has a professional interest in MS.

Social Media

The social media share buttons on the MS Trust website are enabled using AddThis under their privacy policy. These buttons enable you to share information via external social media websites, all of which have their own approach to privacy and how they use your data. If you choose to access these sites, be aware of their policies as follows:

Privacy and our Online Community

This covers the MS Trust Facebook page (and other social media), our Facebook Group, and comments and contributions on pages of the MS Trust website.

When you post personal information on any of our social media platforms or other messaging boards on our website, your information is publicly accessible. Such information can be viewed online and collected by third parties. We are not responsible for the use of information by such third parties. 

When contributing to a discussion we strongly recommend you avoid sharing any personal information that can be used to identify you (such as your name, age, address or name of employer). We are not responsible for the privacy of any identifiable information that you post in our online community.  

If you're 16 or under

If you're aged 16 or under, you must get your parent/guardian’s permission before you provide any personal information to the MS Trust. If you're a young person living with or affected by MS, we have a section on our website of MS information you may be interested in.

Accessing and updating your personal information

You can request access to any information we hold about you by contacting the Data Protection lead at the MS Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET, email, or telephone 01462 476700.

Please let us know of any changes to your personal information held by the MS Trust so we can maintain accurate records.

Changes to this policy

We may change our privacy policy from time to time so please check back periodically. 

Version 5.0

This policy was last updated October 2021.

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