Southampton's regional muscle and nerve disease centres recognised for clinical excellence
Specialist regional services for adults and children with muscle-wasting and nerve diseases at University Hospital Southampton (UHS) have received national centre of excellence status.
The accreditation, awarded by national charity Muscular Dystrophy UK acknowledges outstanding levels of care and commitment to improving the lives of people with the conditions.
The services are among 24 centres across the UK that have been recognised by Muscular Dystrophy UK following a national audit which takes place every three years with assessments against a set of criteria developed by a committee of experts.
It sees the adult service retain its centre of excellence status having first achieved it in 2018, while it is the first time the paediatric service at Southampton Children’s Hospital has achieved the accolade.
Neuromuscular conditions affect the muscle and/or nerves outside the brain and spinal cord, causing progressive muscle weakness, and can be diagnosed in babies, infants, children, adolescents and adults.
These include motor neurone disease, Duchenne muscular dystrophy, myositis, spinal muscular atrophy, neuropathies and myasthenia gravis.
As well as affecting the muscles, these conditions can also affect the heart (cardiac) and respiratory system which requires multi-team involvement from a range of specialists including consultants, co-ordinators, physiotherapists and nurses.
The adult service at UHS treats around 2,000 patients a year, while the children’s service treats around 300 patients, from across Hampshire, Dorset, Wiltshire, West Sussex, the Isle of Wight, the Channel Islands and other parts of southern England.
The adult service also runs specialist outreach clinics in Poole Hospital and Queen Alexandra Hospital in Portsmouth.
Patients are referred for a number of reasons including advice on the diagnosis of a new neuromuscular problem, reassessment, further advice or monitoring for those living with an established condition and long-term support and care.
In 2020 the adult service introduced the UK’s first one-stop clinic in a joint venture with the voluntary sector for patients with Duchenne muscular dystrophy (DMD).
The specialist clinic runs every other month and combines appointments with different health professionals all in one day – reducing the number of appointments patient require to have their condition monitored.
Dr Georgina Burke, neurology consultant at UHS and lead for the adult neuromuscular service, said: "It is a great honour to once again receive the Muscular Dystrophy UK centre of excellence award in recognition of the ongoing care and support that our neuromuscular team provides to patients in Hampshire, Dorset, the Isle of Wight and the wider areas.
“This recognition not only acknowledges our unwavering commitment to those affected by nerve, muscle, and neuromuscular disorders but also underscores the exceptional care delivered by our team of dedicated health professionals.”
She added: “This award is a celebration of the compassionate hearts and skilled hands that tirelessly work to enhance the lives of individuals and families facing these challenging conditions."
The children’s service, led by Dr Marjorie Illingworth, consultant paediatric neurologist, has a strong focus on individualising patient care, ensuring patients and their families are involved in care plans, as well as providing mental health support with the introduction of a psychologist-led clinic.
Dr Illingworth said: “We are thrilled Southampton Children’s Hospital has been recognised as a Muscular Dystrophy UK centre of excellence for the first time.
“The paediatric service takes great pride in communication and team working across our complementary disciplines and with our professional colleagues in supporting subspecialties.
“Our regional working and national networking supports our drive to get the right patients on the right treatments at the right time as new drugs emerge from clinical trials.
“We listen to our patients and their families and this has fostered the development of specialist neuromuscular clinics involving many clinical specialties in one appointment, the Duchenne cardiac clinic and a psychosocial clinic for example, reflecting our dedication to a tailored, individualised and holistic approach to clinical care.”
She added: “We have championed newborn screening for spinal muscular atrophy (SMA) in the wake of time-dependent disease modifiable treatments and we are now the second site in the UK to be piloting this.”
Catherine Woodhead, chief executive of Muscular Dystrophy UK, said: “We would like to congratulate the adult and children’s neuromuscular services at UHS on being recognised with a centre of excellence award after a robust and rigorous assessment of their service.
“Despite continuing pressures and challenges within the NHS, these centres strive every day to ensure they promote best practice and provide an exemplary service.”