Privacy policy

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 six principles of the General Data Protection Regulations 2016. 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.

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

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 Team), 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.


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.

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 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.
• 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.

o 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.

o We may use your personal information to look into, and respond to complaints, legal claims or other issues raised with us.
o 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).
o 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.

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.

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.

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.

For our full privacy notice please visit our website at:

V4.0 May 2018