The Stroke Association (“we”, “us”, “our”) will keep any personal information you share with us safe and will only process it in accordance with this policy and not for any purpose you might not reasonably expect.

Personal information is information that can be used to identify you. It can include your name, date of birth, email address, postal address, telephone number and credit/debit card details. The personal information we hold allows us to provide services, goods and information supporters are interested in and to better understand and improve how we engage, communicate and fundraise for the benefit of people affected by stroke

This privacy policy explains:

  • how we come to hold your personal information
  • what personal information we collect and how we use it
  • how we keep your personal information safe
  • who we share information with
  • how we keep your personal information up to date
  • your right to know what information we hold about you.

How we come to hold your personal information

We will only hold information about you if you have agreed we can hold it or have agreed your information may be shared with organisations including us. This can happen in a number of ways:

  • giving us your information directly eg when you request a service, sign up for an event, make a donation, purchase goods or communicate with us
  • giving us your details indirectly eg when you sign up for an event or fundraise for us through a third party such as the London Marathon or through fundraising sites such as JustGiving. These organisations will only pass on your details to us if you have agreed they can do so
  • you may have provided permission for a company or other organisation to share your details with third parties, including charities. This could be when you buy a product or service, register for an online competition or sign up with a comparison site.

What personal information do we collect and how do we use it

The type of information we collect from you varies depending on the nature of your engagement with us but may include:

  • name
  • contact details including address, phone number and email address
  • date of birth
  • bank or credit card details (only for the purposes of processing donations or purchases).

We may ask for additional information such as an emergency contact and relevant health information if you are receiving Life After Stroke services or you are taking part in a high-risk event.

We will mainly use your personal information to:

  • provide you with services, products or information
  • administer your donation or support your fundraising, including processing gift aid
  • support your volunteering activities for us
  • keep a record of your relationship with us
  • ensure we know how you prefer to be contacted
  • understand how we can improve our services, products or information.

We may also collect and retain your information if you send feedback about our services or make a complaint. 

Below is further detail about how your information is used to support the charity’s work and support your engagement with the charity.

Building profiles of supporters and targeting communications

We use profiling and screening techniques to better understand our supporters’ characteristics and ensure communications are relevant and timely. When building a profile we may analyse geographic, demographic and other information relating to you in order to better understand your interests and preferences. Sending the right communications to the right people reduces our costs allowing more to be spent on supporting stroke survivors.  

We also use these techniques to identify supporters who may be able to give more to help conquer stroke. This type of profiling is often referred to as wealth profiling. In doing this, we may use additional information from third party sources when it is available. Such information is compiled using publicly available information about you, for example addresses, listed Directorships or typical earnings in a given area. We will only use your information for wealth profiling if you have given us your express consent.

Direct marketing

Through our work preventing strokes and supporting stroke survivors and their families by providing services, campaigning, education and research we aim to reach as many people as possible.

With your consent, we will contact you to let you know about the progress we are making and to ask for donations or other support. Occasionally, we may include information from partner organisations or organisations that support us in these communications. We make it easy for you to tell us how you want us to communicate, in a way that suits you. Our supporter recruitment forms have clear marketing preference questions and we include information on how to opt out when we send you fundraising appeals and newsletters. If you don’t want to hear from us, that’s fine. Just let us know when you provide your information or contact us on 030 0330 0740 or supportercare@stroke.org.uk

We do not sell or share personal details to third parties for the purposes of marketing.

Life After Stroke Services

We provide a range of Life After Stroke Services to support individuals affected by stroke which include our Information, Advice and Support Service, Communication Support Service, Stroke Prevention Service, Getting Back to Life Service and Carer Support Service. We collect personal information (including sensitive health information) in order to support the delivery of those services. We may also use your information in an anonymised form for training, quality monitoring or evaluating the services we provide. 

Life After Stroke grants

We provide Life After Stroke grants to fund products and services for stroke survivors which help and aid their recovery. Our grants are means-tested to ensure we're helping those most in need. We collect personal information including financial information in order to administer these grants.

Stroke Helpline and Information Service

Our Stroke Helpline and Information Service provides information and advice to stroke survivors and those affected by stroke. We collect information, including health information, in order to respond fully to enquiries and keep a record of advice offered so we are better able to respond to future queries.

TalkStroke forum

TalkStroke is an online forum where you can meet other people affected by stroke, share stories and experiences, find out what has worked for others and provide each other with support and information. We use your information to create and administer your TalkStroke account. 

My Stroke Guide

My Stroke Guide is our digital self-management tool to support people in their recovery following a stroke. We use your personal information to create and administer your My Stroke Guide account. 

Children’s personal information

There are occasions where we may collect and manage information about children. We aim to manage it in a way which is appropriate to the age of the child. Information is usually collected when children attend our events or fundraise for us. But, we may collect sensitive personal information in respect of children who are supported by a Life After Stroke service, have contacted the Stroke Helpline and Information Service or have been nominated for a Life After Stroke Award.

Where possible and appropriate we will seek consent from a parent or guardian before collecting information about children. Our events have specific rules about whether children can participate, and we‘ll make sure advertising for those events is age appropriate.

Keeping your personal information safe

We strive to do all we can to keep your personal information safe. We ensure there are appropriate technical controls in place to protect your information and prevent unauthorised access. We test our IT security including our firewall annually and adhere to information security standards including the NHS Information Governance standard.

Personal information is available to staff, volunteers and contractors on a ‘need to know’ basis only and we regularly review who has access to what information.

Where we use external companies to collect or process information (including personal information) on our behalf, we do comprehensive checks on these companies before we work with them, and put a contract in place that sets out our expectations and requirements; especially regarding how they manage the personal information they have collect or have access to.

Without your consent, we will only share your details in exceptional circumstances for instance in a medical emergency or where legally required, for example where a child reports abuse or someone reports serious self-harm or a serious intention of harming someone else.

Keeping your details up to date

Where possible we use publicly available sources to keep your records up to date; for example, the Post Office’s National Change of Address database and information provided to us by other organisations as described above.

Please let us know if your contact details change.

Your rights over the information we hold about you

You have a right to ask us to stop using your personal information, and if it’s not necessary for the purpose you provided it to us for (e.g. processing your donation or registering you for an event) we will do so. If you ask us to stop using your personal information we will keep a record of your request so we respect your request now and in the future. Contact us on 030 0330 0740 or supportercare@stroke.org.uk if you have any concerns.

You have a right to ask for a copy of the information we hold about you, although we may charge £10 to cover the costs involved and will require proof of your identity before we will release the information to you.

Changes to this privacy policy

We may change this privacy policy from time to time. If we make any significant changes in the way we treat your personal information we will make this clear on the our website or by contacting you directly. 

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