Privacy Policy

Our contact details  

Name:  NSUN (National Survivor User Network) 

Address: Kemp House, 152-160 City Road, London EC1V 2NX 

Phone Number:  020 7820 8982 

Dated: March 2021 

Next review: March 2022 

Who are we? 

The National Survivor User Network (NSUN) is a mental health membership organisation and a registered charity in England and a registered company limited by guarantee. We work to amplify the voices of lived experience, challenge discrimination, and influence mental health policy and practice. This work involves contact with other voluntary organisations, public sector organisations, policy makers, consultants, and other parties involved in the health and care sector. 

We are committed to safeguarding the privacy of our members and website visitors; subscribers to our newsletters, attendees at our events and others whose data we hold. We want you to feel confident about how any personal information you share will be looked after or used. 

In this policy, we explain the type of personal information we collect, how and why we collect it, how we use it, and how we keep it secure. 

The type of personal information we collect:  

We currently collect and process the following information: 

  • Personal identifiers, contacts and characteristics (e.g. name and contact details) 
  • Demographic information for equalities monitoring (e.g. gender, ethnicity, sexuality) 
  • Credit/debit card details if we need to make a payment to you or if you make a donation or a purchase 
  • Your personal health and social care experiences for projects, research and consultations. This data is anonymised unless otherwise agreed 
  • Your opinion and feedback in relation to any surveys or questionnaires issued by NSUN that you complete, such as feedback on our charitable activities and events. This data is anonymised unless otherwise agreed 
  • Website user statistics and cookies – When you use the NSUN website, like most websites, we receive and store certain details. Cookies mean that a website will remember you and any preferences you have entered. It also helps us to understand how you use our website, and where we can make improvements. 
  • Members’ videos, blogs or articles for publishing on our media such as our website, bulletin and youtube channel which may contain personal information. 

Why we collect personal information 

Most of the personal information we process is provided to us directly by you for one of the following reasons: 

  • To become an NSUN member or supporter, including to receive our newsletter 
  • To register to attend one of our events (online or face-to-face) 
  • To use our website 
  • To feature an item e.g. blog in our newsletter and/or on our website 
  • To complete a survey 
  • To apply for a paid or unpaid role with us 
  • To communicate with us 
  • To make a payment or donation to us. 

We may use the information that you have given us in order to: 

  • Send you member communications, mainly: 
  • Newsletter (weekly) 
  • AGM and members’ event invite (annually) 
  • Invitation to vote prior to the AGM (annually) 
  • Post-AGM feedback survey (annually) 
  • Members’ survey (annually or less) 
  • Occasional email regarding e.g. important pieces of policy work, important announcements about NSUN or regional updates 
  • Process and respond to requests, enquiries and complaints that we receive from you 
  • Send statements, invoices and payment reminders to you, and collect payments from you: 
  • Keep our database up to date 
  • To contact you if we need to obtain or provide additional information 
  • Meet any statutory or regulatory compliance. 
  • Contact relevant authorities in the rare event of a safeguarding issue (see Safeguarding policy) 

How we collect the personal information 

We collect this information via systems including: 

  • Our website membership form which passes the information through to our membership database 
  • Information emailed by you, received by us via Microsoft Outlook 
  • Online surveys via Typeform 
  • Event management system – Eventbrite 
  • Website statistics 
  • Payment mechanisms/ financial systems 
  • Focus groups and interviews (for projects, research and consultations) 
  • Social media (rarely and only if necessary) 

We may share this information with third parties, that is: 

  • NSUN Associates and other third parties who may be contracted to do work for us on relevant projects 
  • Our payment services provider only to the extent necessary for the purposes of processing payments you make via our website, refunding such payments and dealing with complaints and queries relating to such payments and refunds. 
  • Relevant statutory bodies in the event of a safeguarding concern (see Safeguarding policy) 

Your information will only be used for NSUN’s purposes and will never be passed on to third parties for marketing purposes.  

Disclosing personal information 

We will only disclose your personal information: 

  • If required to do so by law; 
  • In connection with any ongoing or prospective legal proceedings; 
  • In order to establish, exercise or defend our legal rights (including providing information to others for the purposes of fraud prevention and reducing credit risk). 
  • If we feel that you are at risk from harm (see Safeguarding policy) 

Lawful basis for processing 

Under the General Data Protection Regulation (GDPR), the lawful bases we rely on for processing this information are: 

(a) Your consent. We will only process personal data after being given express permission by you, after having explained what we will use the personal information for. You are able to remove your consent at any time. You can do this by contacting us at info@nsun.org.uk or by writing to us at our postal address. 

(b) We have a contractual obligation. We sometimes enter intocontractual working agreements with individuals which requires us to process personal data supplied by them.  

(c) We have a legal obligation. This refers to our holding of data on our trustees, and employees’ taxation and pensions. 

(d) We have a vital interest. If we are in contact with a member whose life we believe may be at risk, we reserve the right to share their data with appropriate organisations to try to mitigate this risk. 

How we store your personal information  

Membership data 

Membership data is held securely via a secure, password-protected, cloud-based system called eTapestry hosted by Blackbaud. Only NSUN staff have access to this system.  

Other personal data 

We use Microsoft’s Office secure, password-protected, cloud-based suite of products which includes SharePoint and OneDrive where we store many of our documents. This is hosted on secure servers in the Microsoft environment.  

Data for surveys is stored on Typeform. Data for events is stored on Eventbrite. Both of these are password-protected, secure cloud software systems. 

Our website is a password-protected, secure cloud software system hosted by The Access group

Only NSUN staff and software host administrators have access to these systems. 

Financial data 

All financial data is kept on secure password-protected systems, the access to which is limited to the Finance Manager, CEO and one trustee for secondary signatory purposes where necessary on one bank account. If data needs to be sent to an external source, it will be password-protected or directly uploaded to the website (e.g. HMRC). 

How we keep data up to date 

We want to make sure the information we hold about you is accurate. To do this we are reactive – responding to your requests to update or remove your data, and also proactive – sometimes contacting you to ask if your information is up to date. 

How long we store your data for 

We hold membership data until we are either reactively made aware by you that it is to be removed, or by proactively finding out that the data is no longer valid e.g. by performing a database cleaning exercise trying to contact members to validate the information and being unsuccessful. We then delete the contact record from our database. 

Other personal information that we process for any purpose or purposes will not be kept for longer than is necessary for that purpose or those purposes. 

Your data protection rights 

Under data protection law, you have legal rights over your personal information. For example, you can see it, amend it, ask us to change the way we handle it or have it removed from our records completely. If you want to do any of these things, you can email info@nsun.org.uk and we will respond to you within two weeks at the very latest. You can unsubscribe from our newsletter and mailings by clicking Unsubscribe at the foot of the newsletter, although this will not remove your data from our records. If you wish for all of your data to be removed, please email us at info@nsun.org.uk or via our postal address. 

How to complain 

If you have any concerns about our use of your personal information, you can make a complaint to us at info@nsun.org.uk, call us on 020 7820 8982 or write to us at:  

NSUN, Kemp House, 152-160 City Road, London EC1V 2NX 

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 
Wilmslow 
Cheshire 
SK9 5AF 

Helpline number: 0303 123 1113 

ICO website: https://www.ico.org.uk  

Data protection registration 

We are registered as a data controller with the UK Information Commissioner’s Office. Our data protection registration number is Z2363662. 

This website is owned and operated by the National Survivor User Network (NSUN). 

We are a registered charity in England (no.1135980) and a registered company limited by guarantee (no.07166851). 

You can find out more about your rights under data protection legislation at ico.org.uk.