Skip to main content

Work Package 3: Interviews, Observations and Workshops

This part of HERITAGE looks at how Long Covid and ME/CFS services work, and how they can be better. It is led by researchers at the University of Leicester.

We want to understand:

  • How services are running
  • How staff manage changes to their service
  • How patients experience a service
  • How people who are not using services manage their condition and find support

Taking part is your choice. You can stop at any time and it will not affect your care by the NHS or any health professional, now or in the future.

 

Ways to take part

There are three ways to take part. Some are only for people connected to one of our four NHS sites: Leeds, Leicester, Hertfordshire and Cornwall.

1. An interview. You talk one to one with a researcher about your experiences of Long Covid and/or ME/CFS care and support.

  • Usually up to one hour
  • By telephone, by online call (Microsoft Teams), or in person if you prefer and it is possible
  • You can split it into shorter sessions, or take breaks
  • You can have a carer or supporter with you if you wish

Interviews are for people using specialist services, NHS staff, and people with Long Covid or ME/CFS who are not using services, from anywhere in the UK.

Recruitment to interviews is currently closed.

2. Observation. With your consent, a researcher watches an appointment. They are either at the service, or join a virtual appointment. This helps us see how services are delivered and how people experience them. It is for people connected to one of the four sites.

3. The Quality Improvement Collaborative (a series of workshops). This is optional. Patients, carers, staff and researchers meet in online group discussions (Microsoft Teams) to talk about what makes a good Long Covid or ME/CFS service, and what helps or gets in the way.

  • 10 workshops, each 2 hours, held every 6 weeks, with up to 30 people from each of the four sites
  • You can come to as many or as few sessions as you like
  • You may be invited after, or alongside, an interview. Choosing not to take part does not affect your interview or anything else in the study
  • There is a separate consent form for the workshops
  • Together we will develop and test guidelines for services to use in future, called a National Service Framework
  • Please read the Quality Improvement Collaborative information sheet first
If you... You can...
Are not using specialist services Take part in an interview
Are connected to one of the four sites Take part in an interview, an observation and/or the workshops

 

Interested in taking part? Use these steps:

Step 1. Check you can take part

To take part you must:

  • Be 18 or over
  • Be able to agree to take part yourself (give consent)
  • Be able to communicate in English
  • Have a GP diagnosis of Long Covid or ME/CFS, or have symptoms you report yourself
  • Have had symptoms for 2 years or more [for participants with Long Covid]

And either:

  • Have not used any specialist NHS Long Covid or ME/CFS service in the last 3 years, or
  • Be using, have been referred to, or recently left a specialist NHS service at one of the four HERITAGE sites (Leeds, Leicester, Hertfordshire or Cornwall)

If you work in a Long Covid or ME/CFS service at one of the four sites, we also invite you to take part.

Not sure? Email [email protected] or [email protected]  and we will help you check.

Step 2. Read

Choose the information sheet for what you would like to do. Choose whichever format is easiest for you. You can take as much time as you need before deciding.

Step 3. Tell us you are interested

Email [email protected] or Dr Gemma Hughes at [email protected]. Say which you are interested in, and how you would like us to contact you. Contacting us does not commit you to anything.

What happens next: a member of the research team will contact you. They will make sure you have read and understood the information sheet, or send it to you. They will answer your questions and give you time to decide. You can take as much time as you need.

 

Need help?

Not sure what to do? Email [email protected] or the Leicester research team at [email protected]. We aim to reply within 2 working days. Asking a question does not commit you to anything.

 

Your information

  • Your name will not appear in any reports.
  • It is stored securely and used only for research.
  • You can stop at any time without giving a reason.

HERITAGE has ethical approval from a Health Research Authority research ethics committee. Read the full privacy notices: [HERITAGE Privacy Notice for Participants] · [University of Leeds research participant privacy notice]