Why Your Voice Matters:

With the support of Marie Curie, we aim to explore the challenges in delivering timely end-of-life care to people with learning disabilities, especially when they do not have cancer or dementia. Most people with learning disabilities do not die from these two illnesses. We would like to hear about your experiences here so that we can build up an understanding of the distinct challenges here and what might be useful  and realistic recommendations for practice. The best way for us to do this is to learn from you.

Your perspectives can help directly influence national guidance and future training.

We want to understand:

• How people recognise that someone might be approaching the end of their life, end-of-life indicators.

• Which tools, frameworks, or approaches are used and the extent to which these are useful when applied to people with learning disabilities.

• What are the challenges encountered in this area of practice?

• What has helped or would help improve practice.

Who can take part:

We welcome participation from:

• GPs

• Learning disability health professionals

• End-of-life care practitioners in specialist or community settings

• If you do not think these categories cover you expertise but you feel you have a contribution to make please check in with us. 

How you can help:

Join our asynchronous, moderated online focus group (AOMFG) and engage with others on your own schedule, in a way similar to contributing to a private professional forum. Participation in this is both confidential and anonymous.

This means:

• No live meetings or fixed times

• Log in when it suits you

• Engage in short, reflective discussions every two weeks

• Around 15 minutes per week, over 2-3 months

All participation is anonymous, secure, and moderated.

Will the AOMFG be anonymised?

Yes, all the posts you write will be made using the username we give you. No other users will be able to trace it back to you. Only the research team will know you are involved in the group.

What You’ll Do

• Respond to discussion questions posted every two weeks.

• Read and comment on others’ posts when you want to.

• Share your experience at a pace that works for you.

• Skip any question if needed.

• Receive a CPD certificate if desired.

Technical support and a simple onboarding guide are provided.

More information:

For more detailed information on the AOMFGs and what would be involved, click HERE.