Leeds Teaching Hospitals NHS Trust (LTHT)
The Children’s Neuromuscular service in Leeds was established in 1992 and provides support to the 1 million or so children in what was the old ‘Yorkshire Health Authority’. Over the years, the service has grown and developed considerably. We offer full diagnostic facilities including multidisciplinary clinical assessment, muscle biopsy and histopathology, neurophysiology (electromyography and nerve conduction), muscle MRI (magnetic resonance imaging), genetic evaluation and testing.
The current NM team comprises 2 consultant paediatric neurologists, 2 specialist care advisors, 2 specialist neuromuscular physiotherapist, a specialist NM occupational therapist and a specialist NM nurse. In-patient care is supported by senior therapists from the Paediatric Neurosciences and Respiratory service. The team have access to support from SALT, dieticians, psychologists and other clinical teams based at the Leeds Children’s Hospital. As the Children’s Hospital is co-located with adult services, the full range of adult services is also readily accessible.
Paediatric Neurology
The service carries a caseload of 400+ children with neuromuscular disorders and undertake 2-3 NM clinics/week. Our caseload includes a high percentage of families from a South Asian background, with a high prevalence of NM disorders, particularly those inherited in an autosomal recessive manner as a result of consanguineous marriage. These conditions are often more challenging to diagnose and manage and require greater resources from the clinical team. We work closely with the regional neuroscience network and Yorkshire and Humber NM forum to streamline referral pathways and ensure consistent management across our network.
The Leeds NM team has always been actively involved in the UK Neuromuscular Consortium and NorthStar network, contributing to national audits such as NorthStar and Smartnet, developing guidelines and protocols, working to support service developments, and access to novel interventions/treatments in Yorkshire and across the UK
As a consequence of the care provided, we have been recognised by MDUK as a “Centre of Excellence” in the management of Paediatric NM disorders in 2012 and again in the most recent review in 2015.
In the last few years we have significantly expanded our research portfolio and developed our skills in successfully undertaking a wide range of clinical trials in DMD.
Experience of running trials
Prior to 2013, our immediate trial experience was in relation to other neurological studies in particular interventions for the management of epilepsy. However, we have always been highly committed to research in NM disorders and have a successful track record for recruiting children in Yorkshire to research studies in London and Newcastle.
As a consequence of our developing research portfolio we have secured additional funding for a specialist NM nurse, specialist NM physiotherapist, a NM clinical research fellow and a NM coordinator.
We have developed our skills in research methodology, clinical evaluation and assessment. We have excellent support from our Clinical trials facility and R+D department.
In March 2018, we will be able to use the facilities of our new clinical trials unit with dedicated space to support NM studies.
Other relevant projects
We have strong links with the UK NM consortium, NorthStar and SMA networks.
We also work closely with MDUK who continue to support the Yorkshire and Humber Muscle forum following the ‘Bridging the Gap’ project and the Awaaz forum supporting South Asian families
We have collaborated on a number of publications with our colleagues in the Clinical genetics department, defining the clinical and genetic basis of novel neuromuscular disorders, i.e. MICU1 and EMARD, and with colleagues in other centres to expand the clinical phenotyping of rare NM conditions.
We have always worked closely with our colleagues in Palliative Care, particularly the Research team at Martin House Children’s Hospice, with whom we have undertaken a number of projects looking at the role of palliative care in supporting families living with NM disorders
Contact Information
F Floor
Martin Wing
Leeds General Infirmary
Leeds
LS13EX
National Institute for Health Research (NIHR) Contact:
Fiona Halstead, fiona.halstead@nihr.ac.uk
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