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Living Life With HS
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Survey Terms

Thank you for thinking about taking part. Please read this before you tick the boxes to start.

1. Who we are

The survey is run by Living Life With HS C.I.C., a Community Interest Company registered in England and Wales (company number 17112524), run by people who live with HS, for people who live with it. We are responsible for your information.

2. It’s your choice

Taking part is completely voluntary. You can stop at any time and come back later, because your answers are saved as you go. Some questions are optional, and some sensitive questions have a “Prefer not to say” option. A few “tell us in your own words” boxes need a short answer (about 10 words or more), because your words tell us what the tick boxes can’t. Take your time. The survey has no closing date.

3. Who can take part

You must be 18 or over, live in the UK or Ireland (including the Channel Islands, Isle of Man, Shetland, Orkney and the other islands), and have HS, strongly believe you have HS, or be being investigated for it, or be completing it on behalf of someone who does, such as a family member, friend or professional carer. If you are completing it for someone else, we’ll ask you to tell us so in the survey.

4. Your survey account

You’ll create an account with your email address and a password, so you can save your answers and come back on any device. Please keep your password to yourself. Your survey account is separate from the NexusHub app. Deleting your app account doesn’t delete your survey answers. To delete those, email us.

5. This isn’t medical advice

The survey is research to understand what people with HS need. Nothing in it is medical advice. If you’re worried about your health, please speak to your GP, pharmacist or HS team.

6. This survey is not a support service

We don’t read answers as they come in, and they aren’t routinely checked, so please don’t use the survey to ask for help. A simple automatic check (not AI) looks for a small number of words that might mean someone is at risk. If it finds one, Gareth, our director, may email you to check you’re OK. If we believe someone’s life is in immediate danger, we may contact the emergency services. Please don’t rely on this check.

7. If things feel hard

Some questions ask about pain, mental health, relationships, sex and money, which can bring up difficult feelings. It’s fine to take a break. If you need to talk to someone now:

  • Samaritans: call 116 123, free, any time, day or night (UK and Ireland), or visit samaritans.org
  • Shout: text SHOUT to 85258, free, any time (UK)
  • Text About It: text HELLO to 50808, free, any time (Republic of Ireland)
  • Your GP, or your GP’s out-of-hours service
  • NHS 111: call 111 for urgent medical help that isn’t an emergency (Great Britain. In Scotland it’s NHS 24 on 111). There’s no 111 in Northern Ireland, so please call your GP or GP out-of-hours service.
  • 999 or 112: if you or someone else is in immediate danger

8. How your answers are used

  • Your answers are sent securely and stored in our own protected database, which only our team can access. It’s hosted in the EU (Paris).
  • While we hold them, your answers are linked to your survey account. That means they are pseudonymous, not anonymous.
  • We use them to understand the needs of people with HS, and to campaign for better care and support.
  • By agreeing to these terms, you agree that we may use your answers in charts, grouped figures and short quotes with no name. Every quote is checked so it can’t identify you. Grouped results are anonymous. We never publish figures for groups of fewer than 10 people, or give the town or postcode area below region level.
  • We will only ever put your name alongside a quote if you ticked “Asking permission to use your name alongside a quote from your answers” in section P, and then said yes when we asked you about that quote.
  • We may use your email or phone number to contact you about something in your answers.
  • We never sell your information.

9. AI

We don’t use AI in the survey itself, and AI doesn’t read your answers as they come in. Later, we may use AI tools to help find themes across all the answers. A script on our own server first makes a copy with names, email addresses and phone numbers removed, and only that copy is used. A person always checks the results. Please try not to include anyone’s full name in your written answers.

10. Sensitive information

Some questions ask about your health, disability, ethnicity, sex, gender identity, sex life and lifestyle (including drug use). By ticking the consent box you give your explicit consent for us to use this information for research, as described here and in our Privacy Policy. That box is separate from everything else.

11. Two optional choices

Both are unticked unless you tick them. You can change them any time in your survey hub:

  1. Future research: we’ll email you about future HS research you might want to take part in.
  2. Research and industry partners: we may share your tick-box answers, with your name, email and phone number removed, with carefully chosen research or industry partners to help improve HS care. Anything you write in your own words, including your stories, is never shared. We have no current plans to share. Each partner must sign a data-sharing agreement, we’ll always say publicly who we’ve shared with, and any money goes to the CIC and supporting people with HS, never to anyone’s personal gain.

12. How long we keep things

The survey stays open, and we keep answers for as long as our HS research programme runs. We keep your contact details (name, email address and phone number) until you ask us to delete them. Every 2 years from the date you submitted the survey (at 2, 4, 6 years and so on), we’ll email you to let you know we still have your details, with a link to delete them. If you don’t reply, we keep them. If you confirm on the delete page, ask us by email, or our email to you bounces, we remove your name, email address and phone number and keep your answers without them. A “yes” to sharing with partners still stands after that, unless you tell us otherwise.

13. Changing your mind

You can withdraw at any time and ask us to delete your contact details, your answers, or both, by emailing livinglifewithhs@gmail.com. You can also untick either optional choice at any time. Anonymous results and unnamed quotes already published can’t be withdrawn, because they can’t be linked to you.

14. More detail

Our full Privacy Policy explains your rights, including how to complain to the Information Commissioner’s Office: https://livinglifewithhs.co.uk/privacy-policy/

15. Start-page tick boxes

The tick boxes are:

  • ☐ I am 18 or over. (required)
  • ☐ I live in the UK or Ireland (including the Channel Islands, Isle of Man, Shetland, Orkney and the other islands), and I have read the Survey Terms and Privacy Policy. (required)
  • ☐ Explicit consent to use my answers, including sensitive information, for research. (required, on its own)
  • ☐ Contact me about future HS research. (optional)
  • ☐ Share my tick-box answers, with my name and contact details removed, with carefully chosen research or industry partners. (optional)

© 2026 Living Life With HS C.I.C · Peer support, not medical advice