Do you live with lymphoedema?

Use your experience of living with lymphoedema to help shape research which aims to detect heart failure earlier.

The National Lymphoedema Team is developing a study to find out whether simple finger-prick blood tests carried out in lymphoedema clinics can help detect heart failure early. Identifying heart failure sooner could improve treatment and reduce emergency hospital admissions.

The team want to understand how people feel about having the blood test during their lymphoedema appointment and receiving the results straight away. Your feedback will help make the study meaningful to patients.

What experience do I need to help?

You don’t need any previous research experience or specialist knowledge to take part.

You will need to: 

• Live in Wales and be over the age of 18
• Live with lymphoedema
• Care for someone affected by lymphoedema, or
• Use community or hospital-based health services

What will I be asked to do?

You will be invited to take part in an online group discussion lasting around one hour, held on Microsoft Teams.

Before the session, you will be sent some short, easy-to-read documents about the research to review and give your feedback on.

During the session, you will:

• Hear a short presentation about the planned research
• Share your thoughts and experiences in a relaxed discussion
• Tell the research team what you think about having a finger-prick blood test in a lymphoedema clinic and receiving the results at your appointment

How long will I be needed for?

Your help will be requested for three hours in total, as detailed below:

• About one hour to review the study information in preparation for the session
• One hour to take part in the online discussion
• Around one hour afterwards to reflect and share any extra thoughts if you wish

There may be an opportunity to join the Project Steering Group, this will involve an additional one-hour online meeting every three months (with up to one hour of preparation beforehand) over an 18-month period.

What are some of the benefits for me?

By taking part, you’ll have the chance to:

• Shape real research that could improve how heart failure is detected and managed in Wales
• Share your experiences and views to help make the study more patient-centred and practical
• Learn more about lymphoedema, heart failure and how research can improve care and outcomes
• Develop your confidence in contributing to research discussions in a supportive, inclusive setting

 What support is offered?

The National Lymphoedema Team will:

• Cover reasonable home working, additional carer or childcare costs,
• Offer payment for time of £25.00 per hour (people can request less if they are in receipt of state benefits).
• Members of the study team will be able to support you around meetings to discuss what is required.

 If you are receiving any benefits, you can access confidential advice from the Benefits Advice Service for Involvement. 

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