Alder Hey recently received a prestigious Centre of Excellence award from leading national charity Muscular Dystrophy UK.
The charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting and weakening conditions awarded us for providing outstanding care, promoting best practice locally and nationally and demonstrating their commitment to improving health and care for people living with muscle wasting and weakening conditions.
In total, 24 neuromuscular centres across the UK, including Alder Hey, were recognised. The information gathered through the awards process provides a benchmark of neuromuscular services across all centres that took part in a national audit. This will help centres in their efforts to build business cases for additional NHS investment in core services.
“It is a real honour to continue to receive the Muscular Dystrophy UK’s Centre of Excellence Award in recognition of the ongoing care and support that Alder Hey Neuromuscular Multidisciplinary team provides to our patients in the Cheshire, Merseyside, North Wales and the surrounding areas. We pride ourselves in supporting children and families living with a muscle wasting or weakening condition by providing an excellent standard of clinical care and clinical research opportunities.”
Dr Rajesh Madhu, Consultant Paediatric Neurologist and Lead for Neuromuscular Clinical and Research services at Alder Hey
The centres across the country can provide a lifeline for those living with a muscle wasting or weakening condition including three month old Rafferty who was diagnosed with Amyoplasia at five weeks old. Rafferty’s parents, Barney and Harvie said:
“You don’t ever imagine your child becoming a prolonged inpatient in a children’s hospital, let alone on a neurology ward relying on ventilation and feeding tubes, whilst rehearsing how to pronounce the congenital condition our son has.
“Similarly, when this happens, you don’t expect to meet a whole team of people who are as knowledgeable, compassionate, empathetic and as kind as those working on the Neuromuscular Department at Alder Hey Hospital. It is genuinely difficult to convey how superb they have been, but we’ll try. From their world-class medical expertise, to the way in which they break bad news, their care has been utterly unbelievable.
“We have been surrounded by the very definition of a successful multidisciplinary team, all working together whilst individually addressing not only our son’s complex medical needs but our own social, psychological and financial issues. We have formed excellent relationships with all members and their passion and (clearly innate) desire to help, has made the most difficult time of our lives immeasurably better. We cannot emphasise enough how grateful we are as an entire family to the remarkable neuromuscular team at Alder Hey. Thank you – from the bottom of our hearts.”
Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, said: “We would like to congratulate Alder Hey Children’s Hospital that has been recognised with a Centre of Excellence award after a robust and rigorous assessment of their service by leading neuromuscular experts and members of the muscle wasting and weakening community. Despite continuing pressures and challenges within the NHS, these centres strive every day to ensure they promote best practice and provide an exemplary service.
“The findings from our Centre of Excellence awards demonstrate that many centres continue to require investment to develop specialist multi-disciplinary teams that can provide the best care possible along with a working environment that fosters the ability to conduct or support excellent research and clinical trials to advance treatments and other scientific progress. That’s why we’re calling on commissioners to include requirements for the provision of the recommended standards of neuromuscular care.”
Muscular Dystrophy UK’s Centres of Excellence awards take place every three years. The audit is overseen by the charity’s Services Development Committee, and an independent sub-committee of neuromuscular health professionals and people with lived experience of neuromuscular conditions. The audit reviews information, a range of case studies and examples of best practice as well as assessing the way neuromuscular services are organised and how people using the services can access them.
For further information on Muscular Dystrophy UK’s Centre of Excellence awards visit