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NIHR Clinical Research Network North East and North Cumbria create Learning Disability Research Support Group

Published: 08 December 2020
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The Learning Disability Research Support Group (LDRSG) was set us in partnership with the Lawnmowers Independent Theatre Company and is a Public and Patient Involvement and Engagement (PPIE) group, based in the North East of England. The group give researchers across the UK the opportunity to discuss their research ideas and plans with a group of people with learning disabilities (PWLD).

The group can help with:

  • choosing a research topic
  • creating research questions
  • writing a plain English (#no-jargon-here) and/or easy read summary for applying for funding
  • thinking about how to plan and collect research information in an accessible way
  • how to find and ask people with learning disabilities to take part in research in a welcoming and respectful way

To find out more about the group they have created this short video or you can visit the Lawnmowers Theatre Group website. 

Location of the sessions:

Where possible, the sessions will take place at The Lawnmowers Arts Centre in Pelaw, Gateshead, NE10 0QD

Otherwise, they will take place on Zoom (details to be sent on booking). 

Dates of the sessions:

  • The sessions are held flexibly every 2-3 months depending on demand.
  • We are currently piloting the group slots and sessions will become available from April 2021.
  • Please contact Rachel Arkle (rachel.arkle@nihr.ac.uk) to find out the date of the next available session.

Who can attend the sessions?

  • The sessions are designed to support both researchers involved in research focused on people with learning disabilities AND researchers that want to include our voices (PWLD) in their wider research.
  • If you are unsure whether your work would be suitable for this group then please contact us to discuss it further. 

How can I arrange to attend a session?

In the first instance please contact us using the details below. You will need to provide information about:

  • Who you are
  • What you’re interested in
  • The work you want to talk to us about
  • What you want us to help you with (examples might be developing a plain English summary, looking through patient information, making sure that survey questions are easy to understand or making sure interview methods are accessible to everyone).

How much does it cost to attend a session?

It is our aim to make the LDRSG sustainable.

If you are a researcher with your own grant it is expected that you will be able to fund the session that you are attending.

If you are a PhD student please contact your supervisor to request funds.

If you haven’t got access to a grant, please contact your research institution to find out if there are other funding streams that you can access. 

If you have access to no funds please contact Rachel to discuss this further.

The cost to attend a session virtually is £200 during this pilot.

Please contact Rachel to discuss this in more detail.

What support will be provided?

  • One of the LDRSG members will chair the meeting and another will act as an assistant.
  • The LDRSG will have a pre-meeting and make notes on your questions, which can be sent to you to complement your meeting notes.
  • The LDRSG will have Lawnmowers Theatre company staff members present at every meeting, who will have helped members prepare in advance
  • At the Lawnmowers arts centre we can provide a projector, projector screen and sound.
  • Researchers will need to provide their own computer and cables to connect to projector and sound. (Details can be discussed).
  • A facilitator with a research and/or clinical background will also be present to support the researcher and act to ensure that members of the group are given an opportunity to comment.
  • Members of the LDRSG will use a variety of communication cards, which we will send to you in advance. 

What preparation do I have to do ahead of the session? 

  • At least 4 weeks before the session, researchers need to send us a video and written document explaining their research ideas and what you want the LDRSG to help with. We will send out a template to help you create these.
  • For guidance on writing a plain English summary please visit NIHR INVOLVE.
  • If you want the group to read anything for the session, please send it to us in advance so we have plenty of time to understand it and come up with questions and ideas.
  • You will be send a pack of communi-cards to use during the meeting. 

All documents should be submitted to Rachel Arkle 4 weeks prior to the session via email. 

During the meeting:

  • Sessions usually last 2 hours though time can be flexible.
  • During the session, allow plenty of time for checking understanding, exploring ideas and sharing our own personal experiences
  • At the end of the session allow time for feedback from the researcher and group members to discuss what they have learned.

After the meeting:

  • Once the session has concluded, the researcher will be thanked by the facilitator.
  • The LDRSG really appreciate hearing what happens with the research they are helping with.
  • Please keep in touch with us via Rachel Arkle, our Administrator, to update on your project progress via email.
  • We also want to make sure the research support meetings are useful, so please tell us what was good and what could be improved about the meeting.
  • We will send the researcher a recording of the meeting and the chat notes from zoom for personal use, the meeting recoding may be used publicly if the group are notified.