Northern Ireland’s Multiple Sclerosis charity


Action MS is committed to treating you with respect and to protecting your privacy and to making every effort to ensure that your personal information is processed in a fair, open and transparent manner.

This Privacy Policy sets out how we collect, use and store your personal information and your rights in relation to our processing of this information.

Who we are

The Multiple Sclerosis Action Group Northern Ireland (Action MS) is a charity registered with the Charity Commission for Northern Ireland Reg. No. NIC101829. Action MS provides a range of social care services to individuals living with multiple sclerosis, their families and carers. Action MS does not receive any statutory or government funding towards the provision of its services and relies entirely on donations and its own fundraising efforts to support its work.

Action MS is a “data controller” for the purposes of the Data Protection Act 1998 and from 25th May 2018 the EU General Data Protection Regulation (GDPR). This means that we are responsible for and control the processing of your personal data.

Where we collect your personal information from

We may collect personal information about you in a number of ways:

  • When you contact us to access our services.
  • When you support us by making a donation directly to Action MS or indirectly through websites such as Justgiving.
  • When you fundraise for Action MS.
  • When you become a member or volunteer.
  • When you apply to take part in a fundraising event.
  • When you contact us via a social media platform e.g. Facebook, Twitter etc.
  • When you supply services to the charity.
  • When you make an application to work or volunteer for Action MS.
  • When you become an employee or volunteer with Action MS.

Personal information we may collect

The personal information we normally collect may include details such as your name, address and contact details such a telephone number or email address. We will only ask you to supply the information that we need in order to provide the service or information you have requested.

You may also have given us information such as your name, address and contact details whilst making a donation or fundraising for Action MS.

We may ask for additional information where relevant and appropriate to do so, for example:

  • Age or date of birth
  • How you would like us to contact you
  • Bank details
  • National insurance number
  • Your profession
  • Medical history
  • Information about your MS or the treatments you receive to help us to provide relevant information or support and to tailor our services to meet your needs
  • Financial information
  • Information about family members and / or carers

This information may be retained in a number formats within Action MS, for example:

  • On a database
  • On a client record sheet
  • Notes of telephone conversations or meetings
  • Copies of emails/letters or other documentation
  • In a personnel file
  • In financial and accounting records including gift aid records

Sensitive Personal Information

Data Protection law recognizes some categories of personal information as more sensitive. This can include information about a person’s health, medical history, medical treatments and personal circumstances as well as information relating to a person’s race, ethnic origin, political opinions, sex life, sexual orientation or religious beliefs.

In order to provide you with one or more of our services, we may also collect this type of information. If you provide us with any sensitive information we will treat that information with extra care and confidentiality and always in accordance with this Privacy Policy.

How we use your personal information

We will use your personal information:

  • To provide the service/s that you have requested.
  • To process your donation or other payments, to claim gift aid on your donation where applicable and to verify any financial transactions.
  • To update you with information about your donation, an event or services you have requested.
  • To keep a record of your relationship with us.
  • To comply with legislation and/or the requirements of statutory agencies such as HMRC.
  • To follow the recommendations of the official regulator of charities, The Charity Commission for Northern Ireland, which require us to identify and verify the identity of supporters who make major gifts, so we can assess any risks associated with accepting their donations.

We may also use your personal information to contact you about our work and how you can support Action MS.

Any information you provide to us will not be used in any other way unless you have been informed and we have your specific consent.

Legal basis for using your information

In some cases, we will only use your personal information where we have your consent. However, there are legal reasons that allow us to process your personal information and one of those is called ‘legitimate interests’. This means that there is a legitimate interest for Action MS to process your information to help us achieve our aims and objectives.

Whenever we process your personal information under the ‘legitimate interest’ lawful basis we make sure that we take into account your rights and interests and will not process your personal information if we feel there is an imbalance.

Some examples where we have a legitimate interest to process your personal information are where we contact you about our work by post, improving our services, for legal purposes (e.g. dealing with complaints) or for complying with guidance from the Charity Commission for Northern Ireland.


We will only contact you about our work and how you can support Action MS by phone, email, or text message if you have agreed for us to contact you in this manner. However, if you have provided us with a postal address we may send you information about our work and how you can support Action MS by mail unless you have told us that you would prefer not to hear from us in that way.

You can update your choices to stop us sending these communications at any time by contacting info [at] or clicking the unsubscribe link at the bottom of the relevant communication.

Sharing your information

The staff of Action MS have access to the information you provide to us. However, the information which individual staff have access to is controlled and they can only access information where it is necessary and relevant to do so.

We use third party software in our day to day activities including for cloud storage, administration and accounting and our IT consultants may have access to your information in the course of providing IT support to us.

In the course of our work, it may be helpful to share the personal stories and experiences of people living with multiple sclerosis and the stories of those making donations to Action MS or fundraising on behalf of the charity. We will not share your story with others without your express consent that you are happy for us to do so.

We will not share your data with any other third parties without your knowledge or consent except in exceptional circumstances e.g. where your personal safety or the safety of others is at risk or where legally required to do so.

We will never sell or share your personal information with organisations so that they can contact you for marketing activities.

Keeping your information safe

Action MS takes looking after your information very seriously. We have implemented appropriate physical, technical and organisational measures to protect the personal information we have under our control, both on and off-line, from improper access, use, alteration, destruction and loss. Examples of these safeguards include password protected and encrypted computers.

The transmission of information using the internet is not completely secure. Although Action MS does its best to protect the personal information sent to us or by us in this way, we cannot guarantee the security of data transmitted electronically.

Any debit or credit card details payments which we receive are processed securely according to the Payment Card Industry Security Standards. We do not save debit or credit card details for future use.

How long do we keep your information for?

Action MS has statutory and legal obligations to keep certain information for a period of time after it has been used. Where a statutory or legal obligation does not existing, we will only keep information for as long as is reasonable and relevant to do so.

Once information is no longer required it will be erased from our system or destroyed in a controlled and secure manner.

Your rights

You have various rights in respect of the personal information we hold about you. These are set out in more detail below. If at any time you have a query, or you are unhappy with how Action MS has processed your data please contact:

Rachel McCoubrey, Executive Director
Tel: 028 9079 0707
Email: rachel [at]
Address: Action MS, Knockbracken Healthcare Park, Saintfield Road, Belfast BT8 8BH.

You can also make a complaint to the data protection supervisory authority, the Information Commissioner’s Office, further details of which can be found on the ICO website at

Access to your personal information

You have the right to request access to a copy of the personal information that we hold about you, along with information on what personal information we use, why we use it, who we share it with, how long we keep it for and whether it has been used for any automated decision making. You can make a request for access free of charge. Please make all requests for access in writing and provide us with evidence of your identity.

Right to object

You can object to our processing of your personal information where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground. You also have the right to object where we are processing your personal information for direct marketing purposes. Please contact us as noted above, providing details of your objection.


If you have given us your consent to use personal information (for example, for marketing), you can withdraw your consent at any time.


You can ask us to change or complete any inaccurate or incomplete personal information held about you.


You can ask us to delete your personal information where it is no longer necessary for us to use it, you have withdrawn consent, or where we have no lawful basis for keeping it.


You can ask us to provide you or a third party with some of the personal information that we hold about you in a structured, commonly used, electronic form, so it can be easily transferred.


You can ask us to restrict the personal information we use about you where you have asked for it to be erased or where you have objected to our use of it.

No automated-decision making

Automated decision-making takes place when an electronic system uses personal information to make a decision without human intervention. You have the right not to be subject to automated decisions that will create legal effects or have a similar significant impact on you, unless you have given us your consent, it is necessary for a contract between you and us or is otherwise permitted by law. You also have certain rights to challenge decisions made about you.

We do not currently carry out any automated decision-making.

Please note, some of these rights only apply in certain circumstances and we may not be able to fulfil every request.


A ‘cookie’ is a name for a small file, usually of letters and numbers, which is downloaded onto your device, like your computer, mobile phone or tablet when you visit a website. Cookies let websites recognise your device, so that the sites can work more effectively, and also gather information about how you use the site. A cookie, by itself, can’t be used to identify you.

We use cookies to distinguish you from other users of our website. This helps us to provide you with a good experience when you come to our website and also allows us to improve the user experience.

You can opt out of all our cookies (except the strictly necessary ones). You can find out how to control and delete cookies in your browser. If you choose to refuse all cookies, our website may not function for you as we would like it to.

Cookies used on the Action MS website:

Cookie Name Description Expires
WordPress_test _cookie Session Cookie Duration of user session
_catAccCookies cookie / Privacy Notice Plugin Used to store response of user when asked to accept Cookie Policy when the site first opens. 30 days
_ga Google Analytics – used to distinguish users 2 years
_gid Google Analytics – used to distinguish users 24 hours

If you have any questions about how we use cookies, please contact us.


Your communications with our teams (including by telephone or email) may be monitored for training, quality control and compliance purposes to ensure that we continuously improve our customer service standards.


This Privacy Policy may change so please remember to check back from time to time. This version was last updated on 29 May 2018.

Where we have made changes to our Privacy Policy we will make this clear on our website or contact you about any changes.