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Progress in East Midlands In mid-May, our Bridging the Gap project focused on the East Midlands Neuromuscular Forum in Loughborough, where we were joined by clinicians, health professionals and patient representatives. Headline developments shared at the meeting included: n
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confirmation that the NHS will provide initial funding for three care advisor posts in the East Midlands a case is being submitted to Nottingham University Hospital to recruit a new paediatric consultant two new transition co-ordinators have been employed in Leicester to improve transition for children moving to adult services in the area.
The news of NHS England’s support for two additional neuromuscular care advisor posts was most welcome, as the 5,122 people in the East Midlands affected by muscle-wasting conditions currently have the support of only one care advisor. The Forum will now work with the Trust and commissioners to ensure the swift recruitment of new specialist consultants in Leicester where there is currently only one consultant seeing neuromuscular patients. The consultant has long waiting lists and no support from a multi-disciplinary team. In early 2013 the charity received funding from the Department of Health to set up the Bridging the Gap project in England, to ensure people affected by muscle-wasting conditions – along with their families – play a leading role in the development and commissioning of the services they use. If you’d like to find out more, please get in touch with Rebecca Johnson on 020 7803 2865 or r.johnson@muscular-dystrophy.org
Audit of muscle service in Newcastle At a recent North East Neuromuscular Forum, NHS England announced they would carry out an audit of neuromuscular services at Newcastle. The audit will look at known neuromuscular patients seen at Newcastle, identifying any admissions they may have had over the past year and the reasons for these. We hope the audit will identify that costly and unpleasant emergency admissions can be avoided by investment in frontline services such as provided by neuromuscular care advisors. The international Centre for Life in Newcastle is one of the leading Muscle and Nerve Centres in England, providing a multi-disciplinary approach to the management and support of those affected by muscular dystrophy and related neuromuscular conditions. However, there are still gaps in provision and the same level of support is not available for all patients in the region. One of the key gaps in Newcastle is that there is only one neuromuscular care advisor in the region to provide information, advice and support for over 2,000 patients and their families across the whole of the North East. “We look forward to seeing the results of NHS England’s audit as well as further improvements in the neuromuscular service so that local patients and families get the support they need,” said Bobby Ancil, Neuromuscular Outreach Manager. If you’d like to find out more about the charity’s Bridging the Gap project, please do get in touch with Bobby Ancil on b.ancil@muscular-dystrophy.org or 0792 0188 970
Updates from the Trailblazers Trailblazers have been working on some brand new campaigns putting the spotlight on access to motoring and voting. Ambassadors across the UK have been attending regional events in the Midlands, North West and Wales and we have recently put views and suggestions forward at meetings held with tour operators, airlines and train companies. We are pleased that challenges we raise and suggestions for improvements are being heard by decision-makers, with ideas genuinely considered and actioned. We have heard from some young people that access is sometimes overlooked during election times, and so we wanted to delve deeper. For our Vote with confidence micro-campaign, which is backed by politicians such as David Blunkett MP and Paul Maynard MP, some Trailblazers went undercover and rated their experiences of using polling stations. In our investigation into driving, some Trailblazers have been sharing their experiences of learning to drive and getting hold of adapted vehicles. They will also be supporting others through top tips and ideas for improvements. Our work with Parliamentarians continues and we are looking forward to an event focusing on access to the high street, where we will have the opportunity to discuss our Short-changed investigation. If you’d like to find out more about the work of the Trailblazers, please get in touch at trailblazers@muscular-dystrophy.org or visit our website.
On the web www.muscular-dystrophy.org/trailblazers
Newborn screening report launched in Parliament At the end of April, the Muscular Dystrophy Campaign launched the All Party Parliamentary Group for Muscular Dystrophy report on newborn screening for Duchenne muscular dystrophy in Parliament. With coverage in the Sunday Times and on BBC’s Today programme, the report launch followed an inquiry into newborn screening for the condition. The report
took evidence from leading scientists and clinicians in the field of neuromuscular research, as well as families of boys and young men with Duchenne muscular dystrophy, some of whom were parents of children diagnosed through the former newborn screening programme in Wales. With potential treatments for Duchenne muscular dystrophy in clinical trial, MPs and scientists believe it is vital
current barriers to newborn screening for this condition be addressed now. This would ensure a screening programme were in place before any potential treatments reach the market, so boys who could benefit would be identified in time. If you’d like more information on the report, do get in touch with Peter Sutton on 020 7803 4838 or p.sutton@muscular-dystrophy.org