The University of East Anglia is conducting an online survey to examine the impact of the Covid-19 pandemic on people with motor neuron disease, and are looking for people living with MND to help. Please click here for further information and a link to the survey
The MND CSG’s mission is to bring together the expertise and enthusiasm to develop and improve both the quality of MND research in the UK, and the number of research studies available for people living with MND to participate in nationally. The Group currently includes 36 members with leading MND neurologists, palliative care specialists, patient and carer representatives and other healthcare professional with an interest in MND clinical research.
Explore the clinical studies going on across the UK, and help us to share this important resource with others that may find it useful.
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Researchers are conducting a project to help optimise NIV for people with MND. They are conducting focus groups with healthcare professionals who are involved in recommending, supporting and/or delivering NIV to people with MND, and with stakeholders from third-party organisations such as the MND Association. The focus group will last around 2 hours and will explore the group’s views on the research findings and how best to translate these into improved clinical practice. To find out more information about the study, click here to see the recruitment poster and click here to go to the study web page.
The UK MND Clinical Studies Group, having reviewed the available evidence on the efficacy of edaravone, has agreed the following Position Statement:
The CSG believes a properly designed, randomised placebo-controlled phase 3 trial of oral edaravone is required to determine the treatment’s efficacy. UK MND CSG – oral edaravone position statement
The HighCALS study is conducting a survey for healthcare workers who are involved in the care of people with MND, to find out about how their nutritional needs are currently met.
The survey is open to any healthcare professionals who feel able to comment on this topic, including doctors, nurses, dietitians, speech and language therapists, occupational therapists, physiotherapists and care coordinators. It is accessible via the following link: link here and may take about 20 to 25 minutes to complete.
The purpose of this study is to develop a new form of psychological therapy called Acceptance and Commitment Therapy for improving emotional wellbeing in people with MND. We would like to see how acceptable this newly developed therapy is to people with MND, and whether it is possible to provide it in the NHS.
Acceptance and Commitment Therapy is a new form of psychological therapy that helps people to learn how to live with difficult or distressing thoughts, feelings or bodily sensations, while still doing things that really matter to them or being the type of person they want to be with MND.
Full information is available on the study page, here.
A research team including Prof Mary O’Brien from Edge Hill University, Prof David Oliver from the University of Kent and Prof Chris McDermott from the University of Sheffield are inviting people with MND to take part in a study looking at the way the diagnosis is told to people, the information they are given and if the process is in line with the Guidance produced by the National Institute for Health and Care Excellence (NICE). They are also looking for family members/caregivers of people diagnosed with MND to understand more about how the process is seen by them. It is hoped that the results will be published in scientific papers to enable neurologists, and others involved in health and social care, to be aware of the issues that are raised so that there can be improvements to care. The study has been reviewed and given ethical approval from Edge Hill University Faculty of Health & Social Care Research Ethics Committee.
You will be asked to complete a questionnaire asking about your (or your family member’s) experience of being told the diagnosis of MND. The questionnaire is web-based and can be accessed via the links below. If you would prefer a paper copy of the questionnaire, or for any other queries, please contact Prof Mary O’Brien, firstname.lastname@example.org (01695 650918).
Survey for people with MND: https://www.surveymonkey.co.uk/r/people-with-mnd-survey
Survey for family members/carers: https://www.surveymonkey.co.uk/r/family-carers-survey
HighCALS is a research programme aiming to help people with MND achieve a high-calorie diet. They are currently looking for MND healthcare professionals & those involved in commissioning / delivering services to take part in workshops across the UK during June 2018, to find out about how such needs are currently met in the NHS. Please see the flyer for full details: HighCALS workshops June 2018
ProSec3, evaluating the clinical management of excessive saliva in patients with motor neurone disease, has opened to recruitment. Sheffield has recruited its first patients into the study, and other sites up-and-down the country (20 in total!) are primed to start recruitment very soon. The study is jointly funded by Marie Curie and the Motor Neurone Disease Association. Click here for more information about the study.
Brief description of yourself and career journey to date?
I’m Mary O’Brien, Professor of Palliative and Supportive care at Edge Hill University in the lovely market town of Ormskirk in Lancashire, about 14 miles from the centre of Liverpool. I trained as a nurse and worked in different specialties. After a while working in neurosciences I became a nurse specialist for MND and continued in the role for nearly 10 years before moving into academia. This has given me the opportunity to develop my own research and to collaborate with other researchers. I also hope to inspire new generations of researchers as I teach health professionals about research methods and supervise Masters level and PhD students.
How and why did you get into MND research?
I first got into MND research when I was working as a nurse specialist for MND. The consultant I worked with was very research active and involved in a number of different studies so I started working on some too, the first one was the original Riluzole study. I suppose having such close involvement with people affected by MND and witnessing their struggles made me realise how important research was in our efforts to try and make their lives better.
Can you briefly describe the research you are currently involved in?
I am interested in the needs of people with MND and their family carers particularly towards the end of life and into bereavement. Recently I’ve been working with the MND Association to pilot the Carers’ Alert Thermometer (CAT), a triage tool developed with colleagues at Edge Hill University. The CAT helps to identify those carers who may be struggling and in need of additional support and its use is being rolled out across the MND Association.
What do you enjoy most about your job as a researcher?
Giving people the opportunity to have their voices heard. Being a qualitative researcher is all about listening to people’s stories, taking account of their opinions, trying to understand their experiences and helping to make sense of what is happening to them.
What’s been the highlight of your career so far?
Being awarded a personal chair in August 2015 is certainly a highlight for me. I never imagined when I started my nurse training that I would eventually end up as a Professor.
Who do you admire the most?
There are so many people, it would be hard to pick just one. I do really admire those people who take part in research studies. They give up their time and put themselves out when they may not actually benefit themselves from taking part, but other people may in the future. It is such an altruistic act.
What do you like doing in your spare time?
There never really seems to be enough spare time but I do enjoy a few activities. I try to keep fit and began running marathons about ten years ago. I’m a keen gardener and like growing fruit and veg as well as flowers. I really enjoy baking, and in particular I like making celebration cakes, so it’s just as well I have some chickens to supply me with eggs! Perhaps my most enjoyable activity recently has been spending time with my first grandchild Amelie.