JDRG Centres
London
The London team is headed by Dr Clarissa Pilkington, Professor Lucy Wedderburn and Dr John Ioannou and patients are seen in the rheumatology departments of Great Ormond Street Hospital and University College London Hospital.
Great Ormond Street Hospital and the Institute of Child Health London – Rheumatology Unit
GOSH
The rheumatology department accepts, mostly, tertiary referrals for diagnosis and management of children with inflammatory rheumatological diseases. Referrals on non-inflammatory musculoskeletal problems are also accepted for diagnosis and advice on management. A multidisciplinary team of doctors, therapists, nurses and administrators all work together to support our patients and their families. Inpatients are accommodated on Penguin ward and there is day care, outpatient and ambulatory services, the latter is supported by the patient hotel at GOSH. Our medical team members also work in the adolescent unit at the University College Hospital, London. Our patients will be transferred to this clinic between the ages of 14 and 16 to allow treatment in an age specific environment and to facilitate easier transferral to adult clinics at the age of 19. Uniquely, this unit provides a lead to a GOSH-wide service for referral and management of vasculitis and recurrent fever syndromes. Multispecialist clinics and discussion meetings occur at regular intervals, and the core specialties regularly involved are rheumatology, nephrology, infectious diseases and immunology.
The team also works closely with local teams in secondary centre’s to ensure that our patients are treated in a way that best suits them and have set up the Rheumatology Shared Care Unit (RheSCU) Network to facilitate this.
University College Hospital London (UCLH)
Once a patient turns 14-16 years old, they are generally transferred to adolescent services to continue their care plans. The JDRG has one adolescent centre that enables us to capture long term data from some of the patients that were recruited to the study when a young child. The UCLH Department of Rheumatology is a UK centre of excellence for clinical care, training and research.
The Centre for Rheumatology at UCLH is staffed by a multidisciplinary team including Professors, readers/senior lecturers, consultants, specialist registrars, junior doctors, clinical nurse specialists and physiotherapy practitioners.
The department provides a specialist service for both adult and adolescent patients with any rheumatological disease and we have close links with Great Ormond Street Hospital’s paediatric rheumatology service.
ICH
The JDM Cohort Biomarker Study and Repository (UK and Ireland) Founded in 2000, the cohort was originally called the National JDM Registry and Repository (UK & Ireland). The cohort study is coordinated from the UCL Institute of Child Health. The cohort study was founded by grants from the Cathal Hayes Research Foundation and is currently funded by a grant from the Wellcome Trust. We are currently fundraising to help secure the future of this study and to be able to continue collecting data on this rare, but potentially debilitating, illness.
Liverpool
Liverpool Clinical Academic Paediatric Rheumatology Department – Alder Hey Children’s Hospital
The Liverpool Clinical Academic Department of Paediatric Rheumatology is the second largest paediatric rheumatology unit in the country and one of the UK’s leading Paediatric Rheumatology Research Groups. The Department has a very vibrant local research team and is extremely active in collaborative research with all major paediatric rheumatology research networks across the UK and internationally including the Juvenile Dermatomyositis Registry & Repository, UK JSLE Study Group, Childhood Arthritis Prospective Study, BSPAR Biologics Registry, BSPAR Osteoporosis Study and BPSU Scleroderma in Childhood Study. The Department has nurtured and developed the research skills of trainee doctors, nurses and allied health professionals, all of whom have been active in participating and running research projects. The Department has a monthly Rheumatology Research Forum to support the education and coordination of its multi-disciplinary research portfolio.
Liverpool is the coordinating centre of the UK Juvenile-onset Systemic Lupus Erythematosus (JSLE) Study Group. This is a national multi-disciplinary collaborative research network, similar in many ways to the JDRG, with representatives of all the major paediatric units in the UK and as well as consumer representatives, clinical nurse specialists, adult rheumatologists and scientists in the field of immunology. The group is exploring the clinical characteristics of this archetypal autoimmune disease as well as what causes lupus. The Department has an established and productive laboratory-based research portfolio based at the Institute of Child Health, University of Liverpool, Alder Hey. Aiming to understand the immunopathology of JSLE, they are exploring the role of apoptosis (controlled cell death), toll like receptors (TLRs) and the role of the innate and adaptive immune systems in causing lupus.
Liverpool hosts the coordinating centre for the Medicines for Children Research Network (MCRN; www.mcrn.org.uk). Dr Beresford, Senior Lecturer in Paediatric Medicine and Honorary Consultant Paediatric Rheumatologist at Alder Hey is Chair of the MCRN/ARC Paediatric Rheumatology Clinical Studies Group (CSG). Along with Dr Baildam, Consultant Paediatric Rheumatologist, and the rest of the CSG, he coordinates a comprehensive portfolio of clinical trials and related clinical studies including commercial trials for the whole of paediatric rheumatology across the UK. The Department is proactively involved in driving forward its research agenda forward following a wide range of state-of-the-art research methodologies.
Manchester
Royal Manchester Children’s Hospital Rheumatology Department.
The Royal Manchester Children's Hospital provides specialist healthcare services for children and young people throughout the North West, as well as nationally and internationally. The hospital sees 135,000 patient visits each year across a range of specialties including oncology, haematology, bone marrow transplant, burns, genetics, and orthopaedics.
For Patient and Carer Information, including patient advice, liaison interpretation and translation, patient and public Involvement and chaplaincy please see the trust homepage on
www.cmft.nhs.uk
.
The new Royal Manchester Children's Hospital with 371 beds it is the largest single-site children's hospital in the UK. It has been designed so that all departments are close to the equipment and support that they need. This means patients and staff won't have to travel far within the hospital. It also has purpose-built accommodation with ensuite rooms for carers and families. The new children's hospital provides an integrated paediatric service to Greater Manchester and beyond, the latest medical equipment and information technology, a play centre, schooling, family accommodation and adolescent facilities to cater for the needs of the whole family.
Children's services have relocated from Booth Hall and the Royal Manchester Children's Hospital in Pendlebury, as well as Saint Mary's, to the new Royal Manchester Children’s Hospital.
Leeds
Leeds General Infirmary Children’s Rheumatology Department
Leeds General Infirmary is a specialist regional centre for a number of complex conditions, along with providing many general acute hospital services. The Infirmary has one of the most diverse and architecturally contrasting sites of any hospital in the country.
The Leeds Paediatric Rheumatology Department serves Leeds and offers a regional service to most of Yorkshire with outreach clinics. The service is based at Leeds General Infirmary in the Clarendon Wing. The paediatric rheumatology team is happy to assess all relevant musculoskeletal concerns in children. Some situations are more relevant to Orthopaedic surgeons (e.g. the emergency of possible septic arthritis or any situation where operative management may be needed). The department is keen for early referrals, especially when joint swelling is seen. The most common disease managed by the team is juvenile idiopathic arthritis but we also look after other autoimmune conditions e.g. SLE, juvenile dermatomyositis, scleroderma, vasculitides.
The department can also help with the diagnosis of joint hypermobility, mechanical musculoskeletal complaints and musculoskeletal pain syndromes (e.g. chronic idiopathic pain syndrome, RSD) and direct to the department's therapy team and / or psychologist.
Nottingham
The Queen’s Medical Centre is part of Nottingham University Hospitals NHS Trust, the UK’s fourth largest acute teaching trust. It was established on 1 April 2006 following the merger of Nottingham City Hospital and the Queen's Medical Centre.
We provide acute and specialist services to 2.5 million people within Nottingham and surrounding communities from the Queen’s Medical Centre (QMC) and the City Hospital campuses. In 2009/10 they have an annual budget in excess of £687m of public sector funding and employ approximately 12,000 staff. The Trust has over 1,500 volunteers. The Trust is the principal provider of acute general, specialist and tertiary hospital care to the population of Nottingham, receiving 98 per cent of all elective and urgent referrals from primary care trusts in Nottinghamshire. They currently have approximately 1,663 hospital beds. Activities include general hospital services for the local population and a wide range of specialist services for regional and national patients. They provide a range of general acute and specialist services across nine clinical directorates.
Newcastle
Our Children’s Rheumatology Unit provides the only dedicated service in the North of England for the diagnosis and treatment of children’s rheumatic diseases. It is an award-winning unit, with an international reputation for the quality of care we provide and for our contribution to both national and international research.
We are the only children’s rheumatology team outside London to provide autologous stem-cell treatment for children with the most severe rheumatological problems, and we have one of the UK’s largest research programmes into children’s rheumatology diseases, headed by Professor Helen Foster, one of only three professors of paediatric rheumatology in the country.
We provide a full range of services to treat musculoskeletal problems, such as arthritis, and many other connective tissue diseases, such as systemic lupus erythematosus (SLE), juvenile dermatomyositis (JDM), scleraderma and poly-arteritis nodosa (PAN). We run a rapid access clinic, which ensures that your child can be diagnosed and start their treatment as quickly as possible. Our clinic for adolescents is one of the few in the country that provides a tailor-made service for teenagers and young adults. We also run a dedicated young adult clinic for patients over the age of 18 whose disease started in childhood.
Our treatments include the most modern drug therapies with children’s nurses, paediatric physiotherapists and occupational therapists providing an all-round package of advanced paediatric care. In fact, we are the only unit in the region with a complete team of dedicated children’s specialists, encompassing medical, nursing, physiotherapy and occupational therapy professionals.
Glasgow and Edinburgh
The Royal Hospital for Sick Children Yorkhill Glasgow
The Royal Hospital for Sick Children more commonly known as Yorkhill provides care for newborn babies right up to children around 13 years of age and includes a specialist Accident and Emergency facility. Yorkhill hospital is renowned for specialising in Paediatric healthcare.
The hospital originally opened on 20th December 1882 as the Hospital for Sick Children at Garnethill, Glasgow. The hospital was given Royal patronage in 1889 when it became known as The Royal Hospital for Sick Children.
Due to lack of space by the 1900’s a new location was chosen for the replacement hospital building at Yorkhill and the new building was opened in July 1914. This building was demolished in 1966 when the hospital was temporarily relocated and the new Royal Hospital for Sick Children building was reopened at Yorkhill by Queen Elizabeth II in 1972.
Around 150,000 children from all over Scotland attend the Royal Hospital for Sick Children at Yorkhill
The Royal Hospital for Sick Children has 266 inpatient beds, 12 daycase beds, and handles approximately 90,000 out-patients, 15,000 in-patients, 7,300 daycases and 35,000 A&E attendances every year. The hospital provides care for newborn babies right up to children around 13 years of age.
Within the community Yorkhill Division provides a wide range of services from four Child Development Centres at - Bridgeton Health Centre, Possilpark Health Centre, Drumchapel Health Centre and the new Southbank Centre in the Gorbals. These centres run various clinics dealing with speech, hearing, emotional or behavioural problems, as well as organising immunisation programmes in local schools. A wide range of staff provide these services, including consultant community Paediatricians, psychologists, occupational therapists, speech & language therapists and school nurses amongst others.
In its role as a major academic institution, the Division is home to a number of University departments as well as internationally acclaimed research groups. The Division's significant commitment to the teaching and training of new doctors, nurses, midwives and other health professionals, ensures that highly trained NHS staff are ready to care for the mothers and children of tomorrow.
The Division is dedicated to providing all aspects of care at Yorkhill in a child focused and friendly environment. In order to achieve this, we are actively involving patients and their families through the Patient Focus Public Involvement (PFPI) initiative. This work is ongoing throughout and allows the patients and families actually using our services to tell us they feel and what could be improved at Yorkhill.
The Royal Hospital for Sick Children Edinburgh
The Royal Hospital for Sick Children – often fondly referred to as ‘the Sick Kids’ – provides a comprehensive range of dedicated children's services, including its own Accident and Emergency Department, caring for youngsters from across Lothian and beyond.
The hospital is based at Sciennes, near Edinburgh city centre, and offers services including acute medical and surgical care, specialist surgical and medical care, haematology and oncology, day care, and critical care.
The wards cover a range of specialties, including acute receiving unit and medical specialties; surgical unit and oncology; critical care and theatre services and recovery unit. A busy outpatient department cares for more than 34,000 patients a year.
Rheumatology are a division within the Musculoskeletal Service of the Trust and are principally based at the Western General Hospital, Edinburgh. The Rheumatic Diseases Unit is a joint University/NHS academic and clinical unit and is the major referral centre for patients with rheumatic diseases in South East Scotland.
There are 12 beds for patients with rheumatic diseases and a Day Bed Unit. The Unit also runs a very busy Outpatient service. The Unit sees 1,800 new patients and 5,000 review patients annually at the Western General. Further outpatient clinics are held at the Royal Hospital for Sick Children, St John's Hospital, Livingston, and Roodlands Hospital, Haddington. The Unit works closely with the Arthritis Surgery Unit of the New Royal Infirmary where combined orthopaedic/rheumatology clinics are conducted.
The Unit is also responsible for the provision of the Lothian Osteoporosis Service, a clinical facility available for referral by G.P's. The Lothian Osteoporosis service provides bone densitometry and clinical care for patients who have suffered a fragility fracture and an open access bone densitometry service for primary care within Lothian.
Birmingham
Birmingham Children’s Hospital
The Birmingham Children's Hospital, previously known as The Diana, Princess of Wales Children's Hospital provides general and emergency health care services to children in Birmingham, the West Midlands and beyond. It specialises in liver transplantation, cardiac, and neonatal surgery. Birmingham Children's also hosts the West Midlands Regional Centre for Cleft Lip and Palate, providing a multidisciplinary service for cleft patients, including speech & language therapy, dental, orthodontics, maxillofacial, plastic surgery and psychology. It is currently the only hospital in the UK to carry out intestinal transplants in children.
The hospital is managed by the Birmingham Children's Hospital NHS Foundation Trust, which also provides Child and Adolescent Mental Health Services (CAMHS) for the city.
It opened in 1862 as the Birmingham and Midland Free Hospital for Sick Children at 138–9 Steelhouse Lane It moved to a new site on Ladywood Road in 1917..In 1998 the hospital returned to Steelhouse Lane, to the buildings previously used by the General Hospital.
The Hospital treats over 140,000 children a year from all over the UK, and is regarded as one of the best children's hospitals in Europe.
In 2007, a new extension designed by RPS Group was opened. The modern extension houses a burns unit, one of three such centres of excellence in the country. As well as this, it contains an outpatients department, a neo-natal Unit, a burns ward and a burns operating theatre, as well as additional classrooms for the Education Centre, allowing children to continue their education whilst undergoing medium to long term care in the hospital.
We are a multidisciplinary team comprising doctors, a specialist nurse, social worker, occupational therapist, physiotherapist, support workers and administration staff. We work in partnership with children and young people and their parents, and aims to provide a comprehensive services that not only considers their disease but the impact this may have on their lives. Children and young people with a variety of conditions are seen including Juvenile Idiopathic Arthritis, Lupus, Scleroderma, Dermatomyositis and other rheumatological diseases. Patients with pain syndromes are also seen by the specialist team.
Norfolk and Norwich
Jenny Lind Children's Hospital (Children's Services at the Norfolk & Norwich University Hospital NHS Trust)
Norwich was only the second city in the country to have a children’s hospital (the first was London’s Great Ormond Street). A Norwich infirmary for sick children admitted its first in-patients in April 3, 1854, thanks to the generosity and goodwill of a Swedish opera singer, Jenny Lind. More than one hundred and fifty years later the Jenny Lind Children’s Hospital within the Norfolk and Norwich University Hospital continues to provide treatment and care for the county’s children.
We provide an acute emergency service for medical and surgical problems in children from birth to 16 years and, in some cases, beyond, including neonatal intensive care. A general and specialist Paediatric rheumatology service for the Norfolk area is based at the Norfolk & Norwich University Hospital, where we work closely with local colleagues in Kings Lynn, Gorleston and Bury St Edmunds along with those further afield in Birmingham, London and Nottingham to provide rheumatology care for our paediatric population. Most care is provided by our ambulatory service; the Children’s Day ward (CDW), the Children’s assessment unit (CAU) and the Jenny Lind Outpatient Department. Inpatient care is provided on the general paediatric ward, Buxton.
Clinical Team
The core multi-disciplinary team is led by consultant Dr Kate Armon and includes a paediatric nurse specialist, three paediatric musculoskeletal physiotherapists and a medical secretary. Together they have the experience and expertise to help the child/adolescent and their family to manage their condition and will often enlist the skills of colleagues in other specialities to obtain the best care for families.
The services we provide
We provide a tertiary level paediatric rheumatology service in Norwich. The service is well developed and caters for approximately 150 children with active rheumatology conditions, almost 70 of whom are currently on methotrexate as second line therapy, and 25 receiving biologic therapies.
There is a twice weekly single clinic consultant list expanding to a double list fortnightly with one of the adult rheumatologists. Professor David Scott and Dr Karl Gaffney have considerable experience of paediatric rheumatology and there is an active adolescent transition programme. There is also a weekly nurse led clinic and a specific clinic once every two months for adolescent aged 16yrs and above who have moved on to the adult service. We have a dedicated list for joint injections under general anaesthetic every fortnight and can also provide this under local anaesthetic (Entonox).
Research
The department is active in research, taking part in a number of multi-centre studies; looking at the safety and efficacy of methotrexate and biological therapies in children with arthritis, the long term outcomes in juvenile dermatomyositis and Systemic lupus erythematosus and is currently researching the potential benefits of active therapy in hypermobilty. Research in paediatric Rheumatology is generally on a multi-centre basis because of the relative rarity of the conditions.