Saturday 28 January 2012
Local campaigners lead fight for more specialists
The Muscular Dystrophy Campaign is committed to improving access to specialist neuromuscular services. Patients and families affected by muscle disease are at the heart of this work, joining together with health professionals and political figures in our network of regional Muscle Groups, to call for better care. One such campaigner is Tony Lewis, whose son David was affected by muscular dystrophy. David sadly passed away last year however Tony has continued to championed the needs of all patients with muscle disease in the South East Coast region.
We are delighted to say that thanks to Tony’s dedication and the South East Coast Muscle Group, there is now an NHS led Neuromuscular Steering Group -spearheading plans to boost levels of specialist care across the region. This is an encouraging step towards ending the postcode lottery of care for patients in the South of England.
Tony’s son David had Becker muscular dystrophy and throughout his life he struggled with a lack of specialist care, support and equipment. David sadly passed away last year following numerous respiratory issues however Tony and his wife June remain fully committed to our campaigning work – taking their fight to the All Party Parliamentary Group for Muscular Dystrophy in Westminster and taking up the chairmanship of the South East Coast Muscle Group.
It is this dedication which has led to the NHS setting up the Neuromuscular Steering Group consisting of renowned neuromuscular consultants, local neuromuscular care advisor- Neeru Malhotra, NHS Commissioners and the Muscular Dystrophy Campaign. The group met for the first time this week and plan to meet again in March. The meeting was positive and the possibility of an outreach clinic in the South East Coast was discussed. This would ensure that patients from the region can get specialist care closer to home. This specialist outreach centre would also help increase the understanding of neuromuscular conditions within the wider clinical community as general health professionals could approach the clinic for advice.
The Muscular Dystrophy Campaign’s Muscle Groups have enjoyed success all across the country and we would like to pay thanks to everybody who gives up their time to support us in this way. Their hard work and commitment has led to the recruitment of 31 NHS funded Neuromuscular Care Advisors and numerous other health professionals. Such dedication was recognised as the Charity was awarded Campaigning Team of the Year 2011 by the Charity Times Awards. However the job is complete and we will be working hard throughout 2012 to call for further improvements so that all patients –affected by muscle disease- get the care and support to which they are entitled.
If you would like to join your local Muscle Group, please get in touch on 020 7803 2853 for details of your nearest meeting.
