Facial Palsy UK Privacy Policy

Who are we?

Facial Palsy UK is the national charity for facial palsy in the UK. We provide support and information about the condition to people affected by facial palsy and the health care providers that care for them. We also promote research into causes and treatments as well as raise awareness.

Facial Palsy UK is a charity registered in England and Wales (no. 1148115) and Scotland (no. SC045086), as well as a company limited by guarantee registered in England and Wales (no. 8107184).

Please read this policy carefully along with any other information linked to in this policy to understand how we collect, use and store your personal information. Our Children’s Privacy Notice can be found here.

If you have any questions regarding our Privacy Policy, please write to:

Privacy Officer
Facial Palsy UK
Sunderland Road
Market Deeping

Email: data@facialpalsy.org.uk

Our Privacy Officer is Karen Johnson

What do we do?

Facial Palsy UK launched in 2012, the first charity of its kind specifically supporting people with facial palsy (also known as facial paralysis) due to any cause.

We are dedicated to improving the lives of people affected by facial palsy.

The objectives of the charity are:

  • To provide information and support for people living with facial palsy, their relatives, carers and medical professionals.
  • To establish local support groups throughout the UK.
  • To organise family days for children affected by the condition and their families.
  • To raise funds to support research and training for professionals involved in the diagnosis, management and treatment of facial palsy. This should allow for better treatments, which should be made accessible to all.
  • To publicise the effects of facial palsy and the need for greater services.

Data Protection

Facial Palsy UK takes data protection very seriously.

As you get in touch with us, browse our website, or use our services we collect information. This helps us understand what you are interested in and what information is more relevant to you. This in turn improves the services we deliver and our fundraising communications.

Facial Palsy UK will never exchange or sell your information to another organisation for marketing purposes. We want to reassure you that you’re always in control of how we use your personal information in regards to marketing and fundraising activities.

In some circumstances we do however need to collect and use your personal information for legitimate business purposes, which help ensure we can run Facial Palsy UK efficiently, raise funds effectively and deliver our services. This policy sets out how your personal data will be used, what data we collect, our legal basis for its use, along with outlining your rights in respect of personal data.


In simple terms, your personal information may be used to help us effectively deliver our charitable services or to help us raise funds for those charitable services.

We always strive to provide an honest, clear and transparent approach regarding how and when we may collect and use your personal data. The overview below summarises the different reasons why we do this. We may not use your personal information for all of these purposes – it will depend on the nature of our relationship with you, and how you interact with our services, websites, and fundraising activities.

Purpose and examples of common activities

1. Delivery of charitable services Delivery of our support services will require the recording of clients’ contact details, records of communications, and details about cause of facial palsy, symptoms and treatments. We do not share your personal information without your specific consent. An example of when you might instruct us to share your personal information is if you want to be put in touch with someone who has had a specific surgery that you are considering. If you are interested in being considered for research we will also need to record your details. When you join our community we will record the details you give us and the contact preferences and interests you choose. Our support group volunteers may keep records of your name and email address/telephone number if you attend a local support group, this is so they can send you information about the meeting.
2. Fundraising and Marketing We are a small national charity and intend to grow our fundraising and marketing activities in future. We currently only promote fundraising via our website, social media and e-newsletter. When people join our community they can opt in for postal or telephone communications as well but we will only contact you in line with your preferences. Our fundraising and marketing activities are designed to raise income or promote the aims and objectives of the charity. We may communicate with you about appeals, competitions, commercial trading activities, sponsorships, events or volunteering opportunities. We may also ask if you are able to Gift Aid any of your donations. When you donate or fundraise for the charity we record your details.
3. Management of Volunteers If you are one of our amazing volunteers, we need to use your personal information to manage your volunteering activity, deliver training, involve and update you on our projects and campaigns and to ensure your safety. This may include sending you newsletters or information about our fundraising activities so you can advise the public about our work.
4. Retail trading We operate an e-commerce website and an eBay store. If you interact with these services, we will record your details in our database. We may also use your personal information for the recovery of Gift Aid (where you have completed a Gift Aid declaration).
5. Staff administration We process the personal information of our employees for recruitment, staff administration, remuneration, pensions and performance management purposes.
6. Health Professionals’ website If you register with the Health Professionals’ website we will store your details for the purpose of managing your account and/or taking payment.

Lawful Processing

Facial Palsy UK needs a lawful basis to collect and use your personal data. The law allows for six legitimate ways to process people’s personal data. Only three of these are relevant to charities for the types of purposes listed above.

  • Information is processed on the basis of a person’s consent
  • Information is processed on the basis of a contractual relationship
  • Information is processed on the basis of the ‘legitimate Interests’ of Facial Palsy UK

In extreme situations, we may share your personal details with the emergency services if our employees believe it is in your ‘vital interests’ to do so. For example, this would apply when someone is taken ill at one of our events or on our premises. We may also share your personal information where we are compelled by law to do so.


Facial Palsy UK will ask for your consent to send you marketing and fundraising emails, and text messages. If you register as a Facial Palsy UK volunteer it can be very helpful if you share information on any medical conditions that may affect your ability to perform your voluntary role. This is, of course, voluntary and we will ask for your consent. You can withdraw consent for these channels and activities at any time by contacting our office team.

Contractual Relationships

The vast majority of our relationships with supporters and clients are voluntary and not contractual.

Legitimate Interests

The law allows personal data to be legally collected and used if it is necessary for a legitimate business interest of the organisation – as long as its use is fair and balanced and does not unduly impact the rights of the individual concerned.

There are times when it is just not practical to ask a person for consent. In many situations, the best approach for Facial Palsy UK and our supporters, clients, and volunteers is to process personal data because of our legitimate interests, rather than consent. If you want to change our use of your personal data for marketing and fundraising activities, you can do so at any time by contacting our office team.

What are Facial Palsy UK’s Legitimate Interests?

  • Delivery of our charitable purpose and our charitable objects.
  • Reporting criminal acts and compliance with law enforcement agencies
  • Internal and external audit/independent examination for financial or regulatory compliance purposes
  • Statutory reporting
Publicity & Income Generation
  • In future we may employ conventional direct marketing and other forms of marketing, publicity or advertisement
  • Unsolicited commercial or non-commercial messages, including campaigns, income generation or charitable fundraising
  • Personalisation used to tailor and enhance the customer experience in our digital and postal communications
  • Exercise of the right to freedom of expression or information, including in the media and the arts
  • Analysis to develop corporate strategy and improve communication efficiency
  • Processing for research purposes (including marketing research)
Operational Management
  • Employee and volunteer recording and monitoring for recruitment, safety, performance management or workforce planning purposes
  • Provision and administration of staff benefits such as pensions
  • Physical security, IT and network security
  • Maintenance of suppression files
  • Processing for historical, scientific or statistical purposes
Administrative Purposes
  • Responding to any solicited enquiry from any of our stakeholders
  • Delivery of requested products or information packs
  • Communications for the purpose of providing support
  • Administration of Gift Aid
  • Thank you communications and receipts
  • Administration of existing financial transactions
  • Maintaining “Do not contact lists” (suppression lists)
Financial Management & Control
  • Processing of financial transactions and maintaining financial controls
  • Prevention of fraud, misuse of services, or money laundering
  • Administration of supporters’ estates and/or gifts in Wills where Facial Palsy UK has been named as beneficiary or executor

When we use your personal information, we will always consider if it is fair and balanced to do so and if it is within your reasonable expectations. We will balance your rights and our legitimate interests to ensure that we use your personal information in ways that are not unduly intrusive or unfair.

Data Collected

We collect and use personal information such as name and address details along with other contact information such as email addresses and telephone numbers. We also collect information about the services you use, any purchases or financial transactions you make, or any marketing contact preferences you give. We maintain a record of communications we send to you and we will log any communications that you send to us. We may also ask for other information like date of birth, your interests, and reasons for your support.

If you have kindly Gift Aided your donation, we must record the fact that you are a UK taxpayer and we have to maintain a record of the amount of Gift Aid we have claimed.

Do we process ‘sensitive’ personal information?

Under data protection law, certain categories of personal information are recognised as sensitive, including health information, race, religious beliefs, and political opinions (‘sensitive personal data’). In limited cases, we may collect sensitive personal data about you. We would only collect sensitive personal data if there is a clear reason for doing so, such as where we need this information to ensure that we provide appropriate support, enable you to participate in an athletic event (such as a marathon), or to support you in a volunteering role.

Your credit or debit card information

If you use your credit or debit card to donate to us, or buy something online, we pass your card details securely to our payment-processing partner as part of the payment process. We do this in accordance with the Payment Card Industry Security Standard and don’t store the details on our website or databases.

Where does the information come from?

The vast majority of personal data we hold is given to us directly by our supporters, customers, clients and volunteers in the course of them interacting with our services, websites, or fundraising activities. We may also receive your personal information when you donate to Facial Palsy UK through third party services such as JustGiving, Virgin Money Giving, Charities Aid Foundation or Facebook donations.

We do not use external lead generation agencies.
In some situations we may update our supporters, clients and volunteers personal information using other agencies; for example, to check if you are on the telephone preference service or fundraising preference service.

Data Retention

In general terms we remove identifiable personal data from our records six years after the date of our last interaction. In most cases, this represents six years after the last financial transaction. There are a few exceptions to this rule. If a supporter has kindly left Facial Palsy UK a gift in their will we will maintain our records of that pledge indefinitely to carry out legacy administration and communicate effectively with the families of people leaving us a legacy. If you shared your personal story on our website you will have agreed to publicly share this information over an indefinite period. We will remove personal stories on request. If you contacted Facial Palsy UK for support and did not opt into receiving further communications, we will retain your records for six years after the date of your last communication. For those who opted into further marketing communications we will remove records where a communication has either not been received, responded to or opened after six years.

Data Sharing

Facial Palsy UK will not exchange or sell your personal information to another organisation for their own marketing purposes. However, there are legitimate situations where we may have to share your personal information with other organisations. An example could be where we are using an external service provided via a technical supplier, email broadcaster, or mailing services provider. In these situations, the relationship between Facial Palsy UK and the third party data processor will be governed by a contract and strict security requirements will be in place to protect your personal information. We use Charity Digital (on the DotDigital platform) to send email newsletters, etc., they are based in the UK and data is stored on servers in the UK/Europe. Information entered via our Join our Community signup form is shared with Charity Digital so that we can target mailings appropriately, for example, if someone is interested in a local support group we would only send communications to people geographically close by. Or if someone was interested in Research we may need to target emails via their cause of facial palsy.

Financial transactions relating to our website and services are handled by our payment services providers, Stripe, Go Cardless, Paypal. We will share transaction data with our payment services providers only to the extent necessary for the purposes of processing your payments, refunding such payments and dealing with complaints and queries relating to such payments and refunds. You can find information about the payment services providers’ privacy policies and practices at:

Stripe (URL https://stripe.com/gb/privacy)
GoCardless  (URL https://gocardless.com/legal/privacy/)
Paypal (URL https://www.paypal.com/ie/webapps/mpp/ua/privacy-full)

Your data may also be available to our website provider to enable us and them to deliver their service to us, carry out analysis and research on demographics, interests and behaviour of our users and supporters to help us gain a better understanding of them to enable us to improve our services. This may include connecting data we receive from you on the website to data available from other sources. Your personally identifiable data will only be used where it is necessary for the analysis required, and where your interests for privacy are not deemed to outweigh their legitimate interests in developing new services for us.

Our website provider will not transfer your data to any other third party, or transfer your data outside of the EEA.

Website visitors

We track visitors to our website using Google Analytics. We may also track people who have arrived at our website via our Google Ads Grant. In order to track how many people download our patient guides we are using Google Tag Manager, this is an analytics service provided by Google. Data collected is cookies and usage information, e.g. which geographical area people come from, which of our pages is most popular, what platform you used, etc.

Data Protection Rights

Where Facial Palsy UK is using your personal information on the basis of your consent, you have the right to withdraw that consent at any time. You also have the right to ask Facial Palsy UK to stop using your personal information for direct marketing purposes. Simply contact our office team and they will amend your contact preferences.

Right to be informed You have the right to be told how your personal information will be used. This policy document, and shorter summary statements used on our communications, are intended to be a clear and transparent description of how your data may be used.
Right of Access You can contact us asking what information we hold on you and to request a copy of that information. The General Data Protection Regulation effective from 25 May 2018 gives us 30 days to comply once we are satisfied you have rights to see the requested records and we have successfully confirmed your identity.
Right of Erasure From May 2018, you have the right to be forgotten (i.e. to have your personally identifiable data deleted). In many cases we would recommend that we suppress you from future communications, rather than data deletion.
Right of Rectification If you believe our records are inaccurate you have the right to ask for those records concerning you to be updated.
Right to Restrict Processing In certain situations you have the right to ask for processing of your personal data to be restricted because there is some disagreement about its accuracy or legitimate usage.
Right to Data Portability Where we are processing your personal data under your consent the law allows you to request data portability from one service provider to another. This right is largely seen as a way for people to transfer their personal data from one service provider to a competitor.
Right to Object You have an absolute right to stop the processing of your personal data for direct marketing purposes. If we are processing your personal information based on our legitimate interests or for scientific/historical research or statistics, you may also have a right to object to our use of your information in some circumstances.
Right to object to automated decisions In a situation where a data controller is using your personal data in a computerised model or algorithm to make decisions “that have a legal effect on you”, you have the right to object. This right is more applicable to mortgage or finance situations. Facial Palsy UK does not undertake complex computerised decision making that produce legal effects.

Marketing Preferences

We only want to send you communications that are genuinely interesting, appropriate, and relevant to you. You are in control of how we use your personal information for marketing and fundraising purposes. Simply call our office team on 0330 030 9333 or email them on data@facialpalsy.org.uk and they can update your preferred communication channels, giving you control over the types of communications you receive. You can also opt in or out to communications when you signup via our Join our Community page, visit https://www.facialpalsy.org.uk/support/join-our-community/ . Alternatively contact us via our website https://www.facialpalsy.org.uk/contact/

Collection of Data through ‘Cookies’

Facial Palsy UK uses resident cookies to store data on the hard disk of your computer for the purpose of identifying you when you return to the Facial Palsy UK website. If you have resident cookies disabled in your browser, you are still able to use the Facial Palsy UK websites. Facial Palsy UK uses sessions to store data on our server, which are individually identifiable. This means that a session cookie will be stored on your machine, and will expire once your visit to the Facial Palsy UK website has ended. Functionality of the Facial Palsy UK website depends upon your browser accepting session cookies. Facial Palsy UK tracks visitors to and on the Facial Palsy UK website by using referrer tracking. Facial Palsy UK uses click through and open mail tracking when sending emails. This process gives Facial Palsy UK the ability to tailor future email communications.

By using our website, our social media pages (such as Facebook, Twitter, YouTube, Snapchat and Instagram), subscribing to our services, donating to us and/or shopping online, you agree that, unless you have set your computer’s browser to reject them, we can place cookies on your device and use that data in accordance with this policy.

For more details on our cookie policy and a description of the cookies we use please see our cookie policy.

Notification of changes to this privacy policy

This Privacy Policy may change from time-to-time. For example, we will continue to update it to reflect new legal requirements. Please visit this website page to keep up-to-date with the changes to our Privacy Policy.

What to do if you are not happy?

In the first instance, please talk to us directly so we can help resolve any problem or query. Our office team can help, or you can contact our privacy officer using this email address data@facialpalsy.org.uk.

You can also register with the fundraising preference service (FPS). This service is run by the Fundraising Regulator and allows you to stop email, telephone, addressed post, and/or text messages from a selected charity or charities by using the online service at www.fundraisingpreference.org.uk or by calling 0300 303 3517. Once you have made a request through the FPS, we will ensure that your new preferences take effect within 28 days.

You also have the right to contact the Information Commissioners Office (ICO) if you have any concerns about Data Protection using their help line 0303 123 1113 or at www.ico.org.uk