SMND RAG members Emily Goodall and Anne Quinn attended the national “Patient and Public Involvement” (PPI) conference held in Nottingham. This biannual conference was organised by the National Institute for Health Research and was attended by over 450 delegates. There was a dazzling array of 51 oral presentations/workshops and 79 posters showcasing how patients can, and do, get involved in the research process across health related disciplines. We were taken aback by the scale of the event where the enthusiasm was infectious, leaving us with plenty of ideas on how to expand the work SMND RAG does. We are still the only PPI group of its type in the UK for MND but hope that in the future others will see the benefits Sheffield researchers have gained and replicate the group model to involve those affected by the disease in their research proposals. To view the SMND RAG poster please click here.
The new MND Care Centre website for Sheffield was launched earlier this month, to find out more please click here.
Patients and members of the public reviewing PPI activity within Sheffield Teaching Hospitals NHS Foundation Trust can now see how to get involved with SMND RAG and learn more about the groups activities. Please see the Clinical Research website for more details.
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 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.
Telemedicine in MND may be able to bring specialist care locally to the patient. A pilot study of telemedicine in MND is planned for Sheffield. To develop the software we are keen to understand from patients and carers what questions should be asked and investigate what equipment would be needed. If you are interested in becoming involved in workshops please contact Dr Esther Hobson 0114 271 3188 or via firstname.lastname@example.org.
Ann Quinn attended a PPI event in Yorkshire and wrote a short summary of the experience which can be read here.
To celebrate the best new buildings in Sheffield the Sheffield Civic Trust has opened voting for the Peoples Design Award 2012 and SITraN is in the running. Please register your vote for our world leading research institute athttp://www.sheffieldcivictrust.org.uk/designaward/ and help raise awareness of MND. The voting site will remain open until 12th November with winners announced on 27th November.
SMND RAG are presenting at the 8th National INVOLVE conference ‘Putting people first in research’ which is being held on 13-14th November. The poster is intended to raise awareness of the group, its format and objectives and success to date.
DeNDRoN in collaboration with Motor Neurone Disease Association (MNDA) UK and Scotland have recently launched an MND on-line training package.This has been designed for researchers and health care professionals who are keen to improve their knowledge about the condition, its management and the potential for research into this disease. Resources and on-line tests have been developed to provide the learner with a holistic knowledge base of the condition which they can utilise to support their professional practice.
DeNDRoN’s Motor neurone disease (MND) Clinical Studies Group (CSG) have been essential in driving this piece of work forward. The MND training resource can be accessed through the website at http://www.dendron.nihr.ac.uk/researchers/training/.