Meningitis Now Privacy Policy

At Meningitis Now we are committed to protecting your privacy

Data Statement

This statement informs you about how we process, store and use personal information.

The Data Controller is Meningitis Now, who is registered with the Information Commissioners Office (registration number Z6858537). The Data Protection lead is the Charity’s Chief Executive Officer (CEO), Dr Tom Nutt, who can be contacted at dataprotection@meningitisnow.org or call 01453 768 000.

Meningitis Now is also a Company Limited by Guarantee (registered number 2469130) in England and Wales. This company acts as a data processor in relation to any personal information that is passed to it from the charity solely to enable it to fulfil its commercial and other obligations. There is also a trading arm called Meningitis Trust Trading Ltd (registered number 02567713) which operates under the same policies as the charity. 

If you would like to make a complaint about how your personal information has been used please contact us by emailing dataprotection@meningitisnow.org, calling 01453 768 000 or visiting our Complaints page. If you do not believe that your complaint has been dealt with satisfactorily, you can contact the Information Commissioners Office at https://ico.org.uk/concerns or call 0303 123 1113.

The information we collect

Meningitis Now collects data that has been given directly by you to the charity, for example when you make a donation, enquire about or participate in our services or activities, register for an event, provide feedback for evaluation purposes, purchase items via a third party or otherwise provide the charity with your personal information. This is across all channels for example phone, email and social media. Information that is stored may include your name, postal address, email address, telephone number, date of birth, meningitis experience, relationship to others, donation and Gift Aid declaration, volunteering activity, event participant information and any other aspect of your relationship or correspondence with the charity.

We may also receive information directly from interested individuals such as family members. Occasionally we use publicly available sources of information including social media and the press to identify and reach out to individuals on a one to one basis who have experienced meningitis to offer our support and to update information about our current supporters.

Information we obtain from other organisations

Your information may also be given to us by third parties; for example, online fundraising platforms, card processing companies and other charities or organisations that have referred you on to us (for example, JustGiving, Virgin Giving, PayPal Giving Fund). You should check the third party’s Privacy Policy when you provide your information to them to understand fully how they will process your data.

To enable us to process personal information for each of our operational activities (purposes) we rely on one of six legal bases – Consent, Contractual, Legal Obligation, Protect a Person, Public Interest or Legitimate Interest.  Read more about these legal bases.

We use consent as the legal basis for processing all personal information for direct marketing purposes, including most fundraising and campaigning activities, as well as the general promotion of our activities. You can consent to receive information about meningitis, information about how we support people affected by meningitis and information about how you can support us. You can choose to hear from us by email, post, SMS or telephone.

If you would like to remove yourself from our direct marketing communications, you can do so at any time by either completing our stay in touch form or by contacting dataprotection@meningitisnow.org or calling 01453 768 000.

When working with named individuals at companies or organisations with a clear connection to our cause i.e. the company or organisation is a supplier, supporter, related government department or has a similar objective, we believe we have a legitimate interest to do so and therefore do not rely on consent to process their personal information. 

Where we process personal data relating to your health or your diagnosis, this constitutes special category data and we rely upon Schedule 1(16) of the Data Protection Act 2018 where Meningitis Now is a charity providing support to individuals with a particular disability or medical condition.

We have identified a number of other purposes where we will use an alternative legal basis to process personal information. These activities are described in the relevant sections below. For purposes where we have decided to use our legitimate interest, we have completed a balancing exercise to ensure that individual rights are not compromised. Our balancing exercises are available on request by contacting dataprotection@meningitisnow.org or calling 01453 768 000.

How do we use the information?

Administration and day-to-day activities

When you contact the charity and ask for a reply, we believe it is in our legitimate interest to process your personal information to enable us to do so. In a similar way, if you order materials from us or download information from our website, we believe it is in our legitimate interest to use your personal information to fulfil your request. We will also rely on this legal basis to thank supporters and respond to complaints.

We also believe that it is in our legitimate interest to send personalised correspondence to existing supporters about products or services that may be of particular interest to them, including offering our support services and invitations to specific events such as Family Days and Carol Concerts. Occasionally we will also rely on our legitimate interest to inform groups of supporters about important changes at the charity for example a change of premises or significant changes to the services we provide.

If you do not wish to be contacted by Meningitis Now for any purpose please let us know by contacting dataprotection@meningitisnow.org or calling 01453 768 000.

When we are notified via the Fundraising Preference Service that an individual does not wish to receive any communications from us, we consider this to be a legal obligation so will use this legal basis to process their personal information for this purpose.

Fundraising

The majority of our fundraising activity is classed as direct marketing, so we will only process your personal information for this purpose when we have your consent to do so.

Exceptions include when you register and pay to take part in one of our fundraising events as you have entered a contract with us. We may therefore use this legal basis to give you a welcome call, send you information about the event, send any materials that you have requested, ask you for an update on progress towards achieving your fundraising target and to support you with any related fundraising activities and to safely deliver the event. 

If you order one of our fundraising packs, for example Toddle Waddle or Brew&Bake or enquire about undertaking a community fundraising activity for us, we believe that it is in our legitimate interest to process your personal information to respond to your request. In a similar way, if you set up a Forever Fund (an online memorial to a loved one lost to meningitis), we will process your personal information to send you details about the fund. 

If you set up a Fundraising page for us using an online platform such as Just Giving, Virgin Money Giving or Facebook donate, we have a legitimate interest to process your personal information to thank you and establish if we can assist you in anyway.

If you are an executor of a will in which we are a beneficiary, we will contact you in relation to the bequest as we are legally obliged to do so.

On rare occasions, we may identify and approach individuals on a one-to-one basis if we can establish a clear connection with our cause and when it is in our legitimate interest to do so. This may include sending invitations to one of our events. Where this may involve information relating to an individual’s health or meningitis diagnosis, we rely on Schedule 1(16) of the Data Protection Act 2018 where Meningitis Now is a charity providing support to individuals with a particular disability or medical condition. It may also be where the information has been made public by the individual - for example, a published interview. 

If you accept an invitation to one of our fundraising events, we will use our legitimate interest to process the personal information that you have given us, along with other information from publicly available sources, to inform our conversations with you (for example, to produce briefing notes). 

Processing donations and Gift Aid 

When you make a donation, including setting up a direct debit, we are legally obliged to process your personal information to ensure that we receive the associated funds and keep an accurate record of them. We use third party sites such as WorldPay, Asperato, Go Cardless and PayPal to enable online donations. You should check third parties’ Privacy Policies when you provide information to them to understand fully how they will process your data.  

If you give us your permission to claim Gift Aid, then we are legally obliged to use your personal information to make the relevant claim from Her Majesty’s Revenue and Customs (HMRC).

Support Services 

If you wish to access our services, we believe that it is in our legitimate interest to process the personal information you provide us with to offer you the best support available. Where we process personal data relating to your health or your diagnosis, this constitutes special category data and we rely upon Schedule 1(16) of the Data Protection Act 2018 where Meningitis Now is a charity providing support to individuals with a particular disability or medical condition.

If we pass on your details to a third party such as a support agency, supplier or another charity, we will only do so with your permission or if another legal basis applies i.e. protecting your personal safety. 

We also believe that it is in our legitimate interest to send personalised correspondence about our services to individuals based on their meningitis experience and/or previous relationship with the charity. This may include invitations to Support Events, individual offers of support or information about new services. 

We may also reach out to individuals with an offer of support when we hear about a case of meningitis in publicly available sources such as social media and the press. 

Volunteering 

If you register to become a volunteer with us, we will rely on our legitimate interest to send you information about how you can get involved in this way. This will include information about the charity’s activities, volunteering activities, requests for help including assistance with fundraising activities, sending you details about the tasks you have volunteered to undertake and thanking you for your support. We may also ask you for feedback about your volunteering experience.

If we put you in contact with another volunteer or third party to enable you to carry out a volunteering task, we will only do so with your permission.

If you are a registered volunteer and you do not wish for your personal information to be processed in this way please contact the volunteering team at Volunteering@meningitisnow.org.

Campaigns to recruit new volunteers are considered to be direct marketing so we will only process your personal information for this purpose when we have your consent to do so.

Campaigning 

When we tell you about our campaigns and ask you to support these, this is classed as direct marketing. We will only process your personal information for this purpose when we have your consent to do so.

An exception to this is sending information to government officials, policy-makers or employees at organisations that have a mutual interest in the subject matter, in which case we consider the communication to be in our legitimate interest. 

Press and PR purposes 

We often use the stories of those who have experienced meningitis to demonstrate the impact it can have on people’s lives and how the services we provide can help in the fight against the disease. We only use this information in the press, on social media, on our website or in PR materials when we have permission from those involved to do so. This information could also include photography and video content that you have taken part in creating i.e. a Meningitis Now photo/video shoot or material that you have issued to the charity for publicity purposes.

Monitoring, evaluation and reporting 

To ensure that we can effectively achieve our vision of a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need, we monitor and evaluate the effectiveness of our activities. This may involve working with third parties with specialist knowledge in this area, under contract. We also need to report back to those who have funded our work. In both instances, we believe it is in our legitimate interest to process personal information for this purpose. This means that we may use the information that you give us to understand the effectiveness of our campaigns and fundraising activities, to obtain a better picture of the geographic spread of our supporters or to improve participation in our activities. This includes processing any information that you share with us via feedback forms or surveys. We only share information about you with our funders if it is anonymised or if we have your permission.

If you do not want your personal information to be processed for monitoring and evaluation purposes please contact dataprotection@meningitisnow.org or call 01453 768 000.

Human Resources 

If you are a member of staff at Meningitis Now, we have legal and contractual obligations to process your personal information for a number of purposes including payroll, pensions, insurance, notifying Her Majesty’s Revenue and Customs (HMRC) of your employment status and ensuring health and safety requirements are met.

Information disclosure

Do we disclose information to third parties?

We will only disclose your personal information to service providers who are operating under written contract with us to help us fulfil one of our activities, such as a mailing house, database provider, online shop, Christmas card fulfillment, courier, suppliers or to help with the effective evaluation of our services. With the exception of the Rebuilding Futures Fund

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process, where we need to pass on your name and address to commercial suppliers who are providing approved goods or services. We will not share or sell your personal information with any other organisation for their marketing, promotional or commercial benefit. 

Please note that we may be obliged to disclose your personal information to relevant authorities if it is in the public interest or if we are required to by law, for example for safeguarding purposes.

Information we hold

How can you find out what information we hold about you?

We only hold information for as long as it is necessary for us to fulfil our charitable activities. Our Retention and Deletions policy is available by contacting dataprotection@meningitisnow.org or by calling 01453 768 000.

You have a right to ask for a copy of the information we hold about you. If there are any inaccuracies in the information we provide, please let us know and we will correct them.

If you want to access your information please send a description of the information you want to see to dataprotection@meningitisnow.org or call 01453 768 000.

Personal data storage

How can you stop us from processing your personal information?

You have a right to ask us to stop or restrict the processing of your personal data and if it’s not necessary for the purpose you provided it to us for (for example, processing a donation or registering you for an event) we will do so. You also have the right to ask us to delete your data. Please note these are not absolute rights and there may be circumstances where these rights do not apply e.g. where we have a legal obligation to retain personal data.

Please contact us at dataprotection@meningitisnow.org or call 01453 768 000 if this is something that you would like us to do.

Profiling

Do we carry out any automated decision-making or profiling?

We do not carry out any automated decision-making but we may profile your personal information so that we can communicate with you in a relevant way. We do not buy additional information about you from third parties.

Information security

How do we keep your information safe?

We ensure that there are appropriate technical controls in place to protect your personal details. For example, our online forms are encrypted and our network is protected and routinely monitored by a specialist IT provider. 

We undertake regular reviews of who has access to the information that we hold to ensure that your information is only accessible by appropriately trained staff, volunteers and contractors.

When we use third parties to fulfil a service that requires the processing of your personal information such as couriers or mailing houses, we put a contract in place that sets out our expectations and requirements regarding how they manage and dispose of the personal information that they have access to.  

Some of our suppliers run their operations outside of the European Economic Area (EEA).  Although they may not be subject to the same data protection laws as companies based in the UK, we will take steps to make sure they provide an adequate level of protection in accordance with UK data protection law.

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This Policy was last updated in January 2020.