News Archive: 2018

February 2018

New research study, ProSec3, recruits first patients

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.

December 2017

Mary O’Brien

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.

February 2017

MyTube

The new MyTube website has now been released, please click here to visit the web-based resource for more information about feeding tubes.

NICE Guidelines update

Last year (Feb 2016) NICE published a national guideline about the assessment and management of Motor Neurone Disease (MND-assessment and management nice.org.uk/guidance/ng42) which aims to improve care for people living with MND from diagnosis to end of life.

It covers a number of areas of concern, making recommendations for practice based on the available evidence and recommendations for future research.

Some of the areas covered had been reviewed previously in a respiratory management guideline (Motor Neurone Disease – the use of non-invasive ventilation in the management of motor neurone disease. NICE CG105 2010) which made recommendations about diagnosis and multi-disciplinary team working as well as respiratory assessment and management.  These recommendations are included in this more comprehensive guideline (NG42) and where additional ones have been made this is indicated in the guideline (new for 2016).
Recommendations have been made for the first time in the following areas:

• cognitive assessment
• psychological and social care support
• planning for end of life
• managing symptoms including muscle problems, saliva, equipment and adaptations, nutrition and feeding tubes, communication including ACC and cough effectiveness.

These guidelines offer comprehensive evidence-based recommendations, providing patients and carers with the knowledge to make informed decisions about their care and placing a responsibility on providers (health care professionals and commissioners) to ensure equitable care and access to that care.

For more information please click here