The new Royal Hospital for Children opened its doors on 10th June 2015. It is a tertiary referring centre, accepting patients from the West of Scotland encompassing six territorial Health Board areas. It also accepts referrals from throughout Scotland for some of the national services it hosts. The hospital was designed around the needs of children and who better to provide that insight than existing patients. Working together with architects, nurses, doctors and other clinical staff, young patients from the original Yorkhill Hospital have helped create a hospital that is truly outstanding.
The Children’s Hospital features 244 paediatric beds, with a further 12 neonatal beds in the maternity unit next door. The vast majority of the paediatric beds are in single rooms, with space for overnight accommodation for parents. The Hospital also features a cinema, a Science Centre with interactive activity walls which was funded by the Yorkhill Children’s Charity; indoor and outdoor play areas and a roof garden.
The hospital provides a large number of specialist services to the West of Scotland and the wider population of Scotland, in addition to the full range of secondary care services to people of Greater Glasgow and Clyde. Specialist services include:
For a number of these services, the children’s hospital is recognised as the sole provider in Scotland.
The Neuromuscular Service is housed within the Fraser of Allander Neurosciences Unit. It hosts one dedicated 0.6 WTE specialist Paediatric Neuromuscular Consultant, one PhD Fellow, 2.0 WTE Neuromuscular Physiotherapist, 1 WTE Nurse Specialist, 1 WTE Care Adviser, 0.5 WTE Dietitien, 1.0 WTE Advocacy Officer. The Advocacy Officer (funded by MDUK), Physiotherapist and Care Adviser provide a diagnosis to end of life care and beyond and work across the paediatric and adult services. The Adult hospital (Queen Elizabeth University Hospital) is situated in the same site as the Royal Hospital for Children, facilitating excellent transitional care between both services. The Neuromuscular Service works closely with our partners in Endocrinology, Cardiology, Orthopaedics, Allied Health professionals and Community Teams to provide a complete package of care for the patient population we look after. We work closely with our partner charitable organisations to continually strive to improve health and social care, access to research and the patient experience in the West of Scotland.
Current trials- We have been a North Star site since the start of the North Star network in 2009. Since 2013 we have participated in the FOR-DMD trial (recruiting 8 patients). We are about to commence the Vamorolone trial and have also signed up for Catabasis.
The Harry Sackler Clinical Research Facility is based at our campus with paediatric and adult research staff in the same location. The Neuromuscular team has been performing clinical trials and research at the clinical research facility, with support from research nursing staff. The facility also has capacity to perform clinical trials requiring overnight stay. We have recruited our 5th SMA child in Scotland to commence Nusinersen. We also have six young people on Translarna, and both of these drugs require a standardised clinical approach to monitor the side effect profile and record outcome measures, which may be as a result of the introduction of these new drugs. We have led and supported research in the adult sector in terms of myotonic dystrophy, myasthenia gravis and quality of life in the adult DMD population.
The neuromuscular clinical team has close links with the Developmental Endocrinology Research Group (DERG), based at the University of Glasgow and Royal Hospital for Children. DERG has close links with medical physics and will have its own dedicated medical physics sessions. Currently, a neuromuscular academic trainee funded by the Chief Scientist Office of Scotland, Muscular Dystrophy UK and Action Duchenne is performing a prospective observational study of bone morbidity in children with DMD (ScOT-DMD: Secondary Osteoporosis & Its Therapy in DMD). This study includes a range of innovative methods to evaluate bone and muscle in DMD, including high resolution 3T magnetic resonance imaging (MRI) of the lower limb. The ScOT DMD study has also been adopted as an NIHR portfolio study (UKCRN Portfolio Database; Registration Number: UKCRN ID: 20303).
The Research group have experience in MRI assessment of fatty infiltration in muscle and muscle inflammation, which are required as outcome measures for DMD trials. The recently opened £32 million Imaging Centre of Excellence (ICE) based on our hospital site, houses the only ultra-high field 7T MRI scanner in the UK based at a clinical site. This will provide good access to state of the art imaging for patients in future clinical trials not available in another UK hospital site. Planned research studies in DMD and other neuromuscular conditions including musculoskeletal imaging of the upper limb in adults.
Fraser of Allander Neurosciences Department
Royal Hospital for Children
1345 Govan Road
Dr. Horrocks was appointed as a Paediatric Neurologist in Glasgow in 2004 and took up a Consultant post in Paediatric Neurology with a Neuromuscular interest in 2005, following a one-year Muscle Fellowship in Sydney, Australia. He has since then has worked to improve and progress neuromuscular services to children residing in the West of Scotland. He currently supervises Clinical Research Fellow, Dr. Shuko Joseph and is the Principal Investigator in the FOR-DMD trial. Dr. Horrocks is a member of the Steering Group of the Scottish Muscle Network. He provides specialist neuromuscular care within dedicated multi-disciplinary neuromuscular clinics and undertakes general paediatric neurology on call covering the Wards, PICU, HDU and NICU. He is an expert adviser in judicial medical cases involving neurological and neuromuscular diagnoses.
Marina Di Marco is the Principal Neuromuscular Physiotherapist based in the Queen Elizabeth University Hospital in Glasgow. She has worked in the field of neuromuscular disorders for thirty years and works with both children and adults with muscle wasting conditions. Marina has a clinical, research and teaching remit, and leads the neuromuscular physiotherapy service in Glasgow and the West of Scotland.
Marina is also the Lead Clinician for the Scottish Muscle Network, supporting research and education throughout Scotland and has been in this post since November 2013.
Marina participates in training physiotherapists for research trials globally and presents on standards of care at international workshops.
Jen has worked as a Neuromuscular Nurse Specialist within the team for the past six years. Her current remit is to organise and undertake clinical assessment at North Star clinics, co-ordinate patient care (both acute and out-patients) and is the trial coordinator for our current FOR-DMD trial. Jen is a nurse prescriber and is currently studying for an MsC in Advanced Nursing Practice. She is in the process of completing an audit, investigating patient education and understanding of IM Hydrocortisone in steroid-treated DMD boys.
Shuko has been newly appointed as a Locum Consultant in Paediatric Neurology in Glasgow, a post funded by the DMD Hub, from September 2020. She is a Child Neurologist with a special interest in neuromuscular disorders with a research training background. She completed her time as a clinical research fellow within the Developmental Endocrinology Research Group at the University of Glasgow and has been awarded a PhD in 2020 for the thesis entitled 'Skeletal fragility in boys with Duchenne muscular dystrophy: past, present and future'. Shuko is a Steering Group member of the Scottish Muscle Network and is involved in improving the bone surveillance programme, clinical service standards and in increasing local clinical trial capacity for future international, collaborative translational research in DMD
My role is to make sure that all trial visits are carried out within the trial timetable and that parents are given appointment information for their visits. I liaise with the clinical research team to organise the appointment dates and make sure that any tests that are required for the trial visit are arranged for the same day, as well as arranging travel for patients and their families. I am also responsible for data input onto the various clinical trial databases, answering any queries from the trial sponsors and accurate upkeep of the trial Master Site Files for each clinical trial taking place in Glasgow. In addition, I organise monitoring and site inspection visits.
Susanne is a Specialist Neuromuscular Physiotherapist, working with the Neuromuscular team at the Royal Hospital for Children, Glasgow, since 2014. As part of her role, Susanne is involved with clinical trials, as a clinical evaluator. In 2020, she is working on the VISION-DMD and TAMDMD trials, and is also the research assistant for FOR-DMD and SCOT-DMD. The team are preparing to be involved in the SAREPTA-ESSENCE trial later in 2020. In addition to trials, Susanne assesses and treats neuromuscular patients along with the multi-disciplinary team. This includes out-patients, in-patients and community visits.
Sarah has worked at the Royal Hospital for Children Glasgow for ten years, and as part of the Neuromuscular Physiotherapy Team for seven of these years. This post involves working alongside the neuromuscular multi-disciplinary team, assessing and treating patients at the out-patient clinics and as in-patients on the wards. Supporting patients and their families in their homes and schools is also a key part of the post. Research trials for Duchenne Muscular Dystrophy has become an increasing aspect of the role and she has seen the FOR-DMD trial through from beginning to completion. She is currently a Clinical Evaluator for the VISION-DMD and TAMDMD trials, and is preparing for the Sarepta-ESSENSE trial to begin later in 2020.
Rebecca has been working with the Neuromuscular Physiotherapy team in Glasgow since March 2020. Her post is being funded by the DMD Hub to support the team’s trial capacity. She has extensive experience in a range of specialist rotations in both adults and paediatrics, in hospitals in and around Glasgow. She has worked in the Royal Hospital for Children in Glasgow since 2018. Within this fixed term post, Rebecca is working as a research assistant on the TAMDMD, VISION-DMD and now on the Sarepta-ESSENSE drugs trials. Rebecca also supports the DMD clinics and works with the wider neuromuscular population to support the team in pursuing further upcoming trials.