The group's mission is to empower and enable patient and public involvement in motor neurone disorders research

Latest News

January 2017

Patient & Public Involvement – Interview Project

Members of the SMND RAG were interviewed as part of a project to explore the experiences of patients, carers, volunteers and researchers at SITraN (Sheffield Institute for Translational Neuroscience) in Sheffield.  For more information on the projects findings please click here.

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

December 2016

MyTube

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

October 2016

Cough Augmentation

The equipment for cough augmentation is now back in production so the MND Care Centre are able to start actively recruiting into this service evaluation.

August 2016

Skype

The SMND RAG are able to offer members the opportunity to attend meetings remotely using Skype.  We can have up to ten video streams (9 plus the SMND RAG) visible at one time, if there were to be any extras they would only be able to join as audio.

July 2016

Gene therapy strategy against C9ORF72 related ALS

Dr Guillaume Hautbergue gave an interesting overview on the gene therapy project his team are currently working on. We look forward to further updates on the progress.

April 2016

SITraN Open Day

The SMND RAG will have a presence at the next SITraN open day where you can find out about the research into neurodegenerative diseases like

  • Motor Neurone Disease
  • Parkinson’s Disease
  • Alzheimer’s Disease

You will be able to meet the scientists, watch demonstrations and take a tour through the labs.

To register please email neuroscience@sheffield.ac.uk

March 2016

Consumers in Research event

Members of the SMND RAG will have a presence at the Consumers in Research event on 20th May 2016 – The Circle, 33 Rockingham Lane, Sheffield, S1 4FW.  The event provides an opportunity to talk to patient advisory panels about their experiences of being involved in research, and helping to shape future research and improve patient care.  The event is informal so please drop in anytime 12.00 – 3.00.

For further information and to reserve a place please, contact Lydia Harris lydia.harris@sth.nhs.uk

January 2016

The Involve Me Network

‘Involve me, Sheffield CCG’ has been set up as a way of involving people who care about their local NHS and who would like to be kept updated, or get involved and have their say, on commissioning decisions for the benefit of Sheffield people.

They want to create a relationship with as many people as possible to give people the opportunity to hear what’s really going on in the local NHS ‘straight from the horse’s mouth’ and to gather views on health and social care to inform the key decisions that we make.

For more information please click here

December 2015

Encore Anywhere

Dr Esther Hobson presented the Encore Anywhere project to the group at a recent meeting.  The study is to help patients to use non-invasive ventilation

The study involves patients who have just started to use breathing machines (NIV). Half  of the patients will be monitored using a modem attached to their NIV machine.  It collects information about how someone is using the machine (when they used it, how long for and whether there are any problems).  The information is automatically sent by the mobile phone network to the team in Sheffield.  We hope this will help patients use NIV for longer and gain more benefit. The study has already started and will recruit up to 40 patients over 2016.  The study has received support from Philips, who make the breathing support machines.

You can find out more about breathing support machines (NIV) on this website:www.mymnd.org.uk

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