The ‘Sheffield Motor Neurone Disorders Research Advisory Group’ (SMND RAG) is a committee that brings together patients and carers from the South Yorkshire area who wish to be actively involved in ensuring patient and public involvement in Sheffield MND research.
If you are interested in becoming involved with the group you can access more details about the role and application form here or please contact us at firstname.lastname@example.org for more details. You are also welcome to attend a meeting and can have a tour of SITraN to see if you would like to become involved with this group
Feedback from Annette Taylor following her appointment as the new Co-ordinator for the SMND RAG.
“I am delighted to be appointed as the Co-ordinator for the SMND RAG. I have been involved with the group since it began in 2009 and look forward to the challenge of the new role.”
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.
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