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19th May 2017
A group of NHS North West experts have today been awarded ‘Network of Excellence’ status for their care of people with neuromuscular conditions.
Muscular Dystrophy UK, the charity for 70,000 people living with muscle-wasting conditions, awarded the status to the North West Adult and Paediatric Neuromuscular Network, which works with many of the estimated 8,000 people living with neuromuscular conditions in the North West.
Many muscle-wasting conditions are rare and complex, meaning that professional education is vital for making sure that people receive the right treatment. The network, formed in 2006, was praised by the charity for its events training professionals in the conditions. It has grown rapidly since 2015 with new support staff, involvement from NHS England and more professions joining the network, contributing to its new award status.
The network brings together staff from seven organisations and is one of only three networks to receive the accolade from the charity.
It pools the skills of medical consultants with patient representatives, physiotherapists, occupational therapists, psychologists, commissioners and support staff to provide faster referrals, improved service and better coordination for patients.
The network also supports community teams who work across the network to ensure that they have the knowledge and support to care for people with neuromuscular conditions close to home.
The status was awarded following a rigorous UK-wide audit of neuromuscular services by a panel of experts. The panel, chaired by geneticist Professor Martin Bobrow, were particularly impressed by the network’s focus on hosting events for patients and health professionals across the region. The meetings are welcomed by people living with neuromuscular conditions as a chance to ask questions outside of often stressful clinic appointments.
Dr Esther Vasanth, from Manchester, has two adult sons with Becker muscular dystrophy and said:
“The North West Neuromuscular Network is making a difference to me and my family as they work together to increase the support provided to people with muscle-wasting conditions. The more support our regional neuromuscular experts can provide to NHS decision makers and community health professionals, the more we can see real improvements in our care. The network’s work is essential and this status is well deserved.”
Dr Stefan Spinty, Network Clinical Lead, North West Adult & Paediatric Neuromuscular Network and Consultant Paediatric Neurologist said:
“I am delighted that the Northwest Adult and Paediatric Neuromuscular Network has been recognised as a Network of Excellence. Founded more than ten years ago, the network has brought together multidisciplinary healthcare professionals involved in the care of and individuals affected by neuromuscular disorders, charities and commissioners. Educational events throughout the network over the years have been increasingly well attended leading to significantly increased awareness about neuromuscular conditions, their presentation, diagnosis and modern treatments. The North West Neuromuscular Network will continue to work together to further improve neuromuscular service provision in the North West. On behalf of the network we would like to thank Muscular Dystrophy UK for their ongoing support.”
Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK said:
“The North West is well deserving of becoming a Network of Excellence. The 8,000 people in the North West living with muscle-wasting conditions have specialist needs and the NHS staff working with them need to be fully up to speed on how best to support them. The network’s excellent knowledge-sharing approaches provide a model for other areas as they have put neuromuscular care on the health agenda in the North West.
“The right specialist care helps people to lead longer and less stressful lives, which is fantastic for both patients and the NHS. The network has rapidly become invaluable in providing the services and information that people need. We warmly congratulate the excellent team for delivering such high standards and expertise, and look forward to seeing what improvements to care it cultivates next.”
Alder Hey Children's Charity