New Year Event 2018
The new year started with our ever popular branch event – catching up on important developments in care and research. It was good to meet up with people who have MND, their carers and families (some regulars, some new faces too) as well as former carers, branch supporters, volunteers and members of the Oxford MND clinic team.
Jenny Rolfe, MND specialist occupational therapist, spoke about a new initiative by the MND Association called The Wheelchair Champions Project. Wheelchair services vary a great deal throughout the country and some people have to wait many weeks and months for their assessment and provision. Jenny has had a strategic role with the Association for many years first administering the David Carleton Paget wheelchair Service and then a department of health grant which helped to fund more appropriate powered chairs quickly when needed. Fortunately, in our area an effective MND specialist wheelchair service run by Jenny has existed for a number of years and two more are now set up in Leeds and Surrey.
It has been an objective, for some while, to improve the provision by all statutory services for wheelchairs to those with MND, making things more equitable across the country and to increase skills of those working in the numerous wheelchair services to understand the complex needs of people living with MND. To do this, training events are being held to better inform and equip services about the needs of people living with MND. The attendees have to complete a self – evaluation of their own knowledge and a service audit before the training and then, after they complete training.
This will help evaluate and demonstrate actual change in service delivery and evidence of improvements made. Services are encouraged to provide the powered neuro wheelchair, which Jenny and the MND Association have been instrumental in developing with the manufacturers. This chair meets the ongoing needs of people as the disease progresses. Wheelchair services are also asked to provide a fast track service for people with MND. Accreditation and an award as a “Champion” is only given to the service once they provide evidence of change to service delivery which meets the needs of people with MND better.
Jenny’s talk was an eye opener to many and left us all appreciative of Jenny’s achievements in this field and her commitment to improving the quality of life for people with MND.
Dr Elizabeth Gray is a senior postdoctoral scientist and a member of Professor Turner’s team at Oxford University Neurosciences department. She spoke about her research into neurochemical biomarkers which provide signals unique to MND in the blood and spinal fluid provided from lumbar puncture. In the last 20 years major progress has been made in MND neurochemical biomarker research through analysing damage to neurofilaments and the presence of inflammatory cells. These increases in neurofilaments occur in MND much more than in other neurological conditions. These specific signals, known as biomarkers, may be measured in individual patients to track the progression of the disease. These levels may also be monitored to assess the response to any new drugs which may become available.
As part of Professor Turner’s team, Dr Gray is also involved with the AMBRoSIA project which aims to collect and analyse cerebrospinal fluid, blood and urine samples from up to 900 participants and 450 controls. These samples will be collected across 3 MND specialist centres in London, Sheffield and Oxfordshire to see how the disease is progressing in different people. It may help to differentiate the types of MND. Current diagnosis frustratingly takes an average of one year and this project could lead to faster results and possibly even to preventative treatment earlier on in the disease to slow progression down when new drugs are trialled.
Dr Gray was selected to give a paper on her research at the recent annual international symposium organised by the MND Association in Boston and her talk to the branch and questions answered were much appreciated. She emphasised that this research could not have been done without the generosity of patients and carers donating samples.
It is reassuring to hear that there have been significant developments in research into the disease in the last 15 years. This is thanks to research teams like those of Professor Turner and Professor Talbot in Oxford, and of course, by those affected like many of you who have participated.