Privacy Policy

Our contact details:

The Lewy body Society

Unity House, Westwood Park, Wigan, WN3 4HE

T: 01942 914 000 | E: | W:

Date of Privacy Notice: May 2023 | Review Date: May 2024


Under the UK General Data Protection Regulation (UK-GDPR), The Lewy body Society is obliged to inform individuals how we use their personal data and why. This privacy notice will outline what data we collect from you, why we need it and how it is processed when you use our website. You will also find details of your rights as individuals under the UK-GDPR.

This privacy notice is aimed at visitors to our website who browse and use the various functions available.

Data Controller

The Lewy body Society is the data controller for the personal information that we process about you; this means that we are responsible for the data we collect and make decisions on how your data is processed.

Although the charity is not required to appoint a Data Protection Officer, we have assigned a responsible person to act as a point of reference for data protection related queries. Any questions regarding the processing of your personal data should be directed to our Data Protection Representative (DPR):

N: Jacqueline Cannon | T: 01942 914 000 |

The type of personal data we collect & why?

The Lewy body Society currently collect the following information when you browse or use the features on our website:

Personal identifiers: your full name, contact number, email, postal address and messages. Some or all of this information is collected when using the following features on our website in order to effectively respond to your request or fulfil your purchase on our online shop:

  • Contact Us Form
  • Subscription to Mail List
  • Donating (including Gift Aid)
  • Online Shop
  • In Memory Page

Payment Information: your credit / debit card details will be processed by our third-party payment processor when you buy an item from our online store or donate. Your bank account number will be collected as part of our ‘Bankers Order’ form should you choose to set up a standing order for donations.

Cookies: our website automatically collects certain data including the IP address of your computer or device to help enhance your user experience and improve the performance of our website. You can easily disable any non-essential cookies, please see our website cookies policy for further information.

The Lewy body Society does not process any special categories of personal data for website users.

How do we get your information?

Most of the personal data that we process is provided directly by you when you input your information into the various features on our website such as the online store and contact form.

Information processed by cookies is automatically collected when you visit and use our website; the IP address of your device and cookie preferences are stored unless you choose to disable non-essential cookies.

Our lawful bases for processing your personal data

Under the UK-GDPR, The Lewy body Society must have a lawful bases for processing your personal data. We currently rely on the following lawful bases for processing personal data via our website:

  • You have given us consent to do so by subscribing to our services
  • We have a legal obligation to process personal data to process ‘Gift Aid’ with the UK Government
  • We have determined that there is a legitimate interest to process your personal data in the interests of our organisation’s operations and development.

Withdrawing consent

Where we have asked for your consent to process personal data, you have the right to withdraw this consent should you change your mind at any point by emailing: You can also unsubscribe from our mail list by clicking the ‘unsubscribe’ link at the bottom of our emails.

Who we share your data with?

The Lewy body Society share your personal data with the following third parties (Data Processors) when you use certain features of our website:

  • PayPal to fulfil your transaction
  • HMRC to process ‘Gift Aid’

In addition, if you or someone on your behalf contacts us via our website for advice and support on ‘Dementia with Lewy Bodies’ we may refer your request to an organisation within our trusted network of health and support professionals. We will clearly explain what data we will provide and gain your consent prior to sharing any details.

Any third parties used by the charity are compliance checked to ensure that the company processing adhere to the same high standards and security levels in place at The Lewy body Society. The charity only processes your personal data with third parties if it is necessary for our operations.

Transferring data internationally

The Lewy body Society do not routinely transfer your data outside of the United Kingdom (UK) unless the law or our policies allow us to do so. Sometimes our third-party providers will store information on servers outside of the UK, where this is apparent, we will ensure that providers do so in line with data protection legislation.

How we store your personal information

Your information is stored securely on our website in electronic format on our server which is located in the United Kingdom.

Any personal data processed on our website is kept securely for a set period of time as outlined in our records management and retention schedule. This allows us to ensure personal data is not being kept for longer than necessary.

As a rule of thumb, any submissions made by you using the contact form on our website will be kept until your enquiry has been met and closed. Cookies data will be kept indefinitely unless you disable the features on your browser. Similarly, your name and email address will be kept until you withdraw your consent if you have subscribed to our mailing list. Financial information processed will be kept for a period of 6years in line with our legal tax obligations.

Data is securely disposed of when it is no longer required in line with our retention schedule.

Your data protection rights

Under data protection law, you have rights including:

  • Your right of access – You have the right to ask us for copies of your personal information.
  • Your right to rectification – You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
  • Your right to erasure – You have the right to ask us to erase your personal information in certain circumstances.
  • Your right to restriction of processing – You have the right to ask us to restrict the processing of your personal information in certain circumstances.
  • Your right to object to processing – You have the the right to object to the processing of your personal information in certain circumstances.
  • Your right to data portability – You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.

You are not required to pay any charge for exercising your rights. If you make a request, we have one calendar month to respond to you.

If you would like to exercise any of your rights, please contact us.


If you have any concerns about our use of your personal information, it would be very much appreciated if you could contact us in the first instance to allow us an opportunity to resolve your complaint.

You can also complain to the ICO if you are unhappy with how we have used your data.

The ICO’s address:           

Information Commissioner’s Office

Wycliffe House

Water Lane




Helpline number: 0303 123 1113

ICO website: