Participant Information Sheet.

Study title: Understanding Everyday Life With a Long-Term Condition
Organisation: Ellia (COMMUNITY SUPPORT SOLUTIONS LTD)

Who we are

Ellia is the trading name of COMMUNITY SUPPORT SOLUTIONS LTD (16437222), a company registered in England and Wales.

  • Registered address: 1–11 Alvin Street, Gloucester, GL1 3EJ

  • Email: hello@ellia.org.uk

  • Phone: +44 (0)1452 447 109

Ellia provides non-medical in-home support and companionship across Gloucestershire, helping people stay independent at home.

What is this study about?

We are speaking to people living with long-term health conditions to better understand:

  • what everyday life looks like

  • what kinds of practical and emotional support are most helpful

  • where people feel gaps in current support

The findings will help Ellia design a new non-clinical support service for people living with long-term conditions.

Why have I been invited?

You have a long-term or chronic health condition and may have experience that could help inform this work.

Do I have to take part?

No. Taking part is completely voluntary.

You can:

  • choose not to take part

  • skip any question you do not wish to answer

  • stop the conversation at any time

  • ask for your data to be deleted (before it is anonymised)

Your decision will not affect any services you receive from Ellia now or in the future.

What will happen if I take part?

If you agree to take part:

  1. You will complete a short online form.

  2. We will contact you by email (or phone, if you provide it) to arrange a 10-minute phone or video call.

  3. During the call, we will ask a few questions about your experiences of living with a long-term condition and any support you receive or would like to receive.

  4. We may ask you to show, but not send, a diagnosis letter or clinic summary so we can confirm that you have a long-term condition. We will not store or copy this.

  5. We will take written notes during the call. We will not audio- or video-record the conversation.

After you take part, we will send you a £10 Amazon voucher as a thank you for your time.

Are there any risks or disadvantages?

Talking about your health or personal circumstances can sometimes feel emotional. You do not have to answer any question that makes you uncomfortable, and you can stop at any point.

We are not providing medical advice, diagnosis, or clinical treatment as part of this project.

Are there any benefits?

There is no direct medical benefit, but:

  • your views may help shape a new support service for people living with long-term conditions

  • you will receive a £10 Amazon voucher as a thank you

How will my information be used?

We will:

  • collect only the information needed for this study

  • keep your personal details (name and contact information) secure

  • not store any medical documents

  • anonymise your responses as soon as possible so they cannot be linked back to you

Anonymised information may be used internally by Ellia to design and plan services. It will not be shared publicly in a way that could identify you.

How long will you keep my data?

  • Your identifiable information (e.g. name, contact details linked to your notes) will be kept for up to 90 days from your interview.

  • After this, your responses will be kept in anonymised form only, for research and planning purposes.

Can I withdraw from the study?

Yes. You can withdraw at any time, without giving a reason.

If you wish to withdraw, email hello@ellia.org.uk and tell us you would like to withdraw from the long-term conditions study.

If your data is still identifiable, we will delete it. If it has already been anonymised, it may not be possible to remove it, but it will no longer be linked to you.

How is my data protected?

We comply with UK GDPR and the Data Protection Act 2018. Data is stored securely with access limited to authorised staff.

You can read our general Privacy Policy at www.ellia.org.uk.

Who can I contact with questions or concerns?

If you have questions about this study or how your data is used, please contact:

Email: hello@ellia.org.uk
Phone: +44 (0)1452 447 109

If you are unhappy with how your data is handled, you can also contact the Information Commissioner’s Office (ICO) at www.ico.org.uk.