When you think of scientific research most people will immediately imagine a laboratory with scientists in white lab coats, however MND research takes many forms. As well as research that looks for effective treatments, it is also important to investigate ways to improve the well-being of people living with MND and their carers/family members. The COMMEND research study is one such research project, which is investigating a new form a psychological therapy called Acceptance and Commitment therapy. The aim of this therapy is to help people living with MND who are experiencing difficult thoughts. The project is currently in the clinical trial stage to see how beneficial it is to people living with MND compared to standard care alone.
We know that lots of people are eager to take part in research studies but also aren’t sure what happens during a study or what it is like. So, on today’s blog, we want to highlight both a researcher and a participant’s perspective. We welcomed 3 members of the COMMEND research team, Professor Rebecca Gould, Ben Thompson and Charlotte Rawlinson and a participant from the study, Jennie Starkey. They asked each other some questions to find out a little more about the COMMEND study, what goes into setting up a research study and to also hear Jennie’s experiences whilst being part of the research project.
A Q&A session with the COMMEND team and Jennie
Before we sat down to film this video blog, we asked both the COMMEND team and Jennie to come up with some questions for each other. Jennie kicked off the discussion to ask the COMMEND team more about the therapy, its future and gave some suggestions after her experience using the therapy.
The COMMEND team were then eager to hear more from Jennie’s experiences of using the therapy, why she had decided to take part in research and whether she would recommend this therapy for others living with MND.
What is it like setting up a research study?
Recruitment of the first participant into a research project, such as COMMEND, can take years from when the study was first given the green light. There is a significant amount of administration, organisation and hard work that goes into setting up and then running a study. Whilst we had Ben and Charlotte on the video call, we asked them a couple of questions to give us a closer look at what it took to put together and then run the COMMEND project.
The current momentum in MND research would not be possible without the dedication and sacrifice of people living with MND taking part in research studies all over the world. If you are interested in taking part in research, there are a wide variety of different opportunities on our website.
If you are interested in finding out more about Acceptance and Commitment Therapy, you can read about Professor Eva Sundin’s experiences here.
We would wish to thank Rebecca, Ben, Charlotte and Jennie for their help writing and filming this blog.
Find out more about Jennie:
My name is Jennie, I am a 50-year-old mum of 4, a now retired psychology lecturer and a PhD student. Life was ‘normal’, until 30th September 2021 when I was diagnosed with Progressive Bulbar Palsy, a form of Motor Neurone Disease. I write on WordPress regarding living with MND (mndjourney.uk), I have attended the 33rd International MND symposium as a Patient Fellow, been fortunate to have been a participant on the COMMEND trial and last year reached a fundraising total of £12K for the MND Association.
Find out more about the COMMEND Team:
Professor Rebecca Gould is a Professor of Psychological Therapies in the Division of Psychiatry at University College London and an honorary clinical psychologist at Camden & Islington NHS Foundation Trust. She is the Chief Investigator of the COMMEND trial, which is a clinical trial of Acceptance and Commitment Therapy for people living with motor neurone disease.
Ben Thompson is a Study Manager based in the Clinical Trials Research Unit in the School of Health and Related Research, University of Sheffield. He has a background in nursing, working for a decade as a registered mental health nurse in the NHS, before moving to research 5 years ago. He has been involved in the delivery of randomised control trials in MND and dementia, as well as smaller projects in mental health, surgery and audiology settings.
Charlotte Rawlinson has worked as the central Research Assistant on COMMEND for the last 4 years. She studied Psychology BSc and Cognitive Neuroscience MSc whilst working in Special Educational Needs. Charlotte has since worked on various observational, drug and non-drug randomised control trials in Movement Disorders, Neurology and Psychiatry at UCL and the National Hospital for Neurology and Neurosurgery.
