Privacy Policy

Privacy Policy

Polio Survivors Network  –  PO Box 954, Lincoln, LN5 5ER, UK


Charity No 1064177 registered under the name of Lincolnshire Post-Polio Network

The purpose of this privacy policy is to describe the types of information that we collect from you when you contact us and become a member of Polio Survivors Network (PSN) and to explain how we use that information.

This is in line with General Data Protection Regulation (GDPR) which came into effect on the 25th May 2018.

This privacy policy refers to the storage and usage of all data, however, it is only personal data not available in the public domain which is covered by the new GDPR legislation – not, for example, work contact details or role information.

What information do we collect about you?

We may collect personal information that you share with us about you or your family when you contact or interact with Polio Survivors Network.

The personal information we collect may include:

  • Information that is relevant to any questions, queries or feedback you send us via email, post or the website.
  • Phone calls to us: nature of contact, interaction and resolution as appropriate.
  • Any personal information that you disclose in the course of participating in our research or surveys via our newsletter, website or other means.
  • Personal data you share with us when you become a member. This includes name and contact details only as specified by you via our membership form and via our Communication Consent form. Such details are entered on our encrypted spreadsheet for administrative purposes only. Please be assured your details are not shared with any other party.
  • Details regarding any payments (membership subscriptions and donations) are also stored electronically on our secure Paypal account and on our secure CAF Bank account as appropriate.

You may contact PayPal or CAF Bank to view their privacy policies and procedures for transactions at any time.

You can request all the information we hold on you and you can request for this information along with your details, to be withdrawn at any time.

What do we use your information for?

We may use your information to:

  • Administer your membership and forward our regular newsletter to you: Post Polio Matters.
  • Provide information to you.
  • Inform you of news and events in the field of post polio syndrome and any related conditions.
  • Offer you the opportunity to take part in research or to inform you of related research taking place.
  • Inform you of patient organisations as appropriate.
  • Ask for your opinion or feedback.
  • Promote fundraising activities.
  • Promote campaigns or projects we are running.
  • Invite you to our annual AGM and any other events as appropriate.

Data collected when you visit our website

We record only the location when you visit our website, you can edit what data our site collects on your first visit.

Cookies on our website

Cookies are used when you visit our website in order to load pages faster for your convenience.

Social media and other websites

Our Facebook page is in an early stage of development. It is monitored by one of our Trustees.

When you use sites such as Facebook you do so in accordance with the separate terms and conditions and policies of these sites or as are related to you in your terms and conditions.

Where your data is stored

We keep your member information stored on a secure Excel spreadsheet. Access is password protected. Only our Trustees have access. This spreadsheet is administered and monitored by our membership administrator. This is shared and stored between our trustees via our encrypted Webmail accounts via Arvixe Hosting.

Paper copies of this information are not available.

Keeping your data secure

We take our responsibilities very seriously and we have procedures and security features in place to try and keep your data secure once we receive it.

Access to your information is restricted to our membership administrator and to other named trustees as appropriate.

The exception to this may be pen pictures or case studies. We may contact members we have an existing relationship with to see if they will share their personal stories with other members via our newsletters. We may also ask new members if they would like to share their ‘polio life’ stories via our newsletters. If you give consent to this, those ‘pen pictures’ or stories as they appear in a specific newsletter are kept on our website. These may be viewed by anybody visiting our website and thus reading our newsletters online.

Paper copies of our newsletters are sent to members as requested and may be given to family members, carers or other appropriate medical professionals.

You can withdraw consent for these to be used at any point by contacting our newsletter editor.

How long do we hold your data?

We will continue to store your details in order to provide you with information in relation to your membership and in line with your consent as given on the communication contact form. This can be withdrawn at your request at any time and records will be destroyed.

Should our charity cease to exist at any time, all records would be destroyed. You would be notified of any such eventuality.

Sharing your information

As noted above, your details are not shared with any other party.

Data breaches

In accordance with the new GDPR legislation (May 2018), all data breaches of personal data will be reported to the Information Commissioner’s Office within 7 days.

Your rights

You can contact us to request a copy of any information we hold about you, ask us to correct or remove any inaccurate information or ask us to delete some or all of the information we have collected about you at any time, and at no cost.

You have the right to be forgotten – which means PSN will remove all information that it holds on you. If you want to be ‘forgotten’ please contact PSN directly via post, phone or email.

This cannot apply to social media, you are responsible for posts you have made on our social media site (Facebook) and therefore must remove them yourself.

It is your right to request any personal information that we hold on you as part of an ‘access request’.  This comes at no cost to you and we are committed to providing that information to you within one month. Please send your access requests to the address detailed at the top of the page. We only hold the information you have sent us and we can only contact you in the ways you have specifically opted in to on our Communication Contact form.

It is our commitment that we will only collect relevant information. If you have been asked to fill in your details and want to know why we have asked for a specific piece of information, contact us and we will explain why. If you have any other queries at all, please do not hesitate to contact us.

Changes to Our Privacy Policy

We will regularly review and update this policy to make sure it is accurate and simple to understand.

This policy was written on the 24th May 2018 and complies to current regulations.

How to Contact Us

Please contact us if you have any questions about this policy or the information that we hold about you. Contact details are at the top of this page and also on our website.

The Data Protection Officer is currently Hilary Boone and can be contacted:

In writing: PO Box 954, Lincoln, LN5 5ER

By email:

By phone: 01522 888601