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Privacy Policy

This privacy statement discloses the privacy practices for the OCD-UK forums and charity.

Updated: 22nd September 2021

At OCD-UK we’re committed to protecting your privacy, which is why we have written this policy to explain how and why we collect your data, to explain how we look after any information we have about you and how that is used to help provide the services that we operate in order to help you.

We collect and process personal information about our supporters and other people that we engage with in order to help us give you the best possible experience through the smooth running of our services as we work to meet our charitable objectives to support people affected by Obsessive-Compulsive Disorder (OCD).

We will never sell any information we have about you and you will be able to change how or if we contact you at any point.

So on behalf of all at OCD-UK we thank you for your support and understanding about our use of your data.  If you have any questions regarding our management of your personal information please don’t hesitate to contact us at office@ocduk.org or using the postal address at the bottom of this policy document.


How do we collect information?

  • When you choose to interact with us.

We collect personal information about you each time you interact with us, for example when you submit a form, register on one of our websites like this forum, make a purchase from our shop, make a donation, or otherwise provide us with personal information, whether online, on the phone or via post or at a support group. 


  • When you interact with third parties.

We may also receive information about you from selected trusted third parties, for example when you sign up to fundraise for OCD-UK using a third party fundraising platform such as JustGiving or setting up a donation for OCD-UK with PayPal or the Charities Aid Foundation (CAF).  But rest assured where we obtain your details from a third party, we will process the data to the same standards as if you submitted your data to us directly.


  • When you visit our website.

We may gather information from you as you browse our website to help us improve your online experience. Like most websites, we use cookies to help us do these activities, but wherever possible, we use aggregated or anonymous information that does not identify individuals. This includes allowing us to recognise you when you visit our site more than once, identify what device was used to access the site, how you came to our site, monitor what pages are most popular and save any personalised settings.

For example the OCD-UK Online support forum gives people the chance to share their experiences of living with OCD and ask any questions. The forum is open and anyone using our website has access to the posts you make, although we do moderate it to try to make sure it is a safe and supportive space. Please read our forum guidelines for acceptable usage guidance.

You can change your cookies to prevent this type of activity, please view our cookie policy for further details.


What information do we collect?

The type of information and data that we may collect includes: your name, date of birth, e-mail address, postal address and telephone number. We will also collect and securely hold your debit or credit card banking data, should you choose to make a donation when making a one-off donation or a standing order or direct debit.    On this forum all we collect is your email address to allow you to register on the forum and your IP address is stored.

Where we are delivering services to you, we may ask you for more information about your health, for example if you suffer with OCD or if a loved one may suffer with OCD, we ask this information to make sure we send you information which is tailored to you. Some data forms we supply may request voluntary information about your ethnicity to ensure we are reaching a diverse audience.


Who is the data controller in research participation?

As part of our charitable mission we work with the NHS organisations and other researchers to improve the care and services which people living with OCD receive. To do this, we periodically ask people to participate in research surveys about the experience and the care they receive. When we list such requests we will clearly specify who is the data controller responsible with access to the data and what purpose the data would be used for and for how long it would be stored.


How do we use this information?

We will use your personal information in order to help us give you the best possible experience through the smooth running of our services as we work to meet our charitable objectives to support people affected by Obsessive-Compulsive Disorder (OCD).

Additionally we will use your personal information for administration purposes – such as processing membership to OCD-UK or donation mandates and, if you allow it, to contact you about our conference events, fundraising or campaigning activities. 

If you sign up for one of our events, like a fundraising event, we will use your contact details to provide you with information about the event and to support you with any associated fundraising.

We provide a helpline and email support service for people living with or affected by OCD. Any medical information (about OCD) provided to the helpline is kept strictly confidential, it is not logged. We only use this information to answer your questions and provide you with any support you request on the phone or via email.  

If you join our membership scheme, we will use your data to send you your membership benefits, information about other ways to get involved with us and to make sure the information we send you is relevant to you.

If you buy a product from our shop, we will use the information you provide to complete your order.

We will not use your personal data for any other purpose without your consent and we will contact you according to your stated preferences. 

We hold your data on a secure database and in usable format only for as long as is required and determined by the recency of your interactions with us, or for as long as we are required to do so by law (for example, we may need to keep a record of any financial transactions for a pre-determined period of time).  For example, the information you provide the forum (email address) is only stored for two years if you are inactive from the account, i.e. have not logged in for two years.

We do not pass on your data to any other third party without your express permission, or unless required to do so by law. We may need to share your information with our contracted service providers – such as fundraising services suppliers to help us carry out our charitable activities, but would only do so if you have asked us to do so.

Will we disclose the information we collect to outside parties?

We do not sell, trade or rent your personal information to other individuals or organisations. However, your information or data may be disclosed for the following extreme reasons:-

  • There is a legal obligation upon OCD-UK to disclose;
  • It is for the purposes of national security;
  • The disclosure is for the purpose of the prevention or the detection of crime, or the apprehension or prosecution of offenders;
  • It is likely that your life or the life of someone else would be in danger if the disclosure were not made and OCD-UK had not reasonably been able to gain your consent (or the consent of another person on your behalf) to disclose.


How do we protect personal information?

We use secure servers which encrypts your data when you make a donation or purchase via our website or submit personal information such as email address on the forum. We also take appropriate measures to ensure that the information disclosed to us is kept secure, accurate and up to date and kept only for so long as is necessary.


What is your right to be forgotten?

Sometimes users create an account here on the forum to post about an OCD problem they're experiencing and after a few days of receiving support choose to log out of the forum and may not log in again for a variety of reasons, but often because they no longer need our help.  In order to ensure we are not retaining any individuals data longer than necessary we have a policy of deleting all accounts that have not been accessed (logged in to) for a period of two years, (currently under review to reduce to 18 months).  In order to retain your account you must login at least once every two years, but we recommend you do this at least once every 18 months.  


What is your right of access and withdrawing consent?

You have the right to ask for a copy of the information we hold about you and to have any inaccuracies in your personal details corrected. You can also request that we remove your records from our database or provide you with a copy of the information we hold about you. You can also ask us to stop using your data for a specific purpose.

You can withdraw your consent for us to hold or to use your personal data for the purposes set out above by emailing office@ocduk.org  or writing to us at the postal address at the bottom of this document.  We try to ensure that any changes to your personal data are enacted as soon as the request is processed, which is usually within ten working days.

Changes to personal details

If your personal details change please help us to keep your information up to date by notifying us. You can do this by:

  • emailing office@ocduk.org
  • changing your email or postal address in the admin panel of our forum or shop website by logging in and amending the relevant data.
  • posting your changes to our charity's Data Protection Officer by writing to us at the postal address at the bottom of this document.



OCD-UK Privacy Document and Complaints

We reserve the right to amend this privacy document at any time. If we do so, we make every effort to inform you of any material changes to the policy by updating our website and forum pages.

If you have any complaints about the way we collect and manage your data please let us know so we can address them. We have appointed a data control officer within OCD-UK to oversee the way we manage your personal data. They can be contacted by emailing office@ocduk.org or writing to:

Data Control Officer
Harvest Barn, Chevin Green Farm
Chevin Road
DE56 2UN

If you’re unhappy with the way we respond to any complaint, you also have the right to complain to the Information Commissioner’s Office (ICO) which regulates the use of personal data in the UK, via their website at: https://ico.org.uk/concerns.   However OCD-UK will do everything possible to ensure we resolve your concerns to ensure you don’t need to contact the ICO.


Thank you 


22nd September 2021

OCD-UK Forums, Harvest Barn, Chevin Green Farm, Chevin Road, Belper, Derbyshire, DE56 2UN

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