LUPUS UK Centres of Excellence
Alder Hey – Liverpool (Official Opening: October 2010)Led by: Professor Michael Beresford
Alder Hey’s paediatric rheumatology unit is the first LUPUS UK Centre of Excellence for Children and Young People. It provides the highest level of specialist care to children and adolescents across the region. Their department is leading in paediatric research with links to all major centres across the UK and around the world. They care for patients with severe chronic inflammatory conditions, including lupus. Some are life-long and can have an enormous impact on the child and adolescent, as well as the wider family.
City Hospital/Queen Elizabeth Hospital/Birmingham University (Official Opening: October 2005)Led by: Professor Caroline Gordon, based at City Hospital and Doctor Ben Rhodes, at the Queen Elizabeth Hospital
Rheumatology clinics run at City Hospital, Queen Elizabeth Hospital and Birmingham University from Monday to Friday. Patients with all types of rheumatic diseases are seen by specialists; X-ray and scanning facilities are also available within the area. Their rheumatology team have close links with specialists within their hospital and more widely throughout the West Midlands.
The Kellgren Centre for Rheumatology- Manchester (Official opening: October 2007)Led by: Professor Ian Bruce
The Kellgren Centre for Rheumatology, based in Manchester Royal Infirmary, manages a broad range of musculoskeletal and autoimmune disorders. They currently have six consultants and two registrars who provide a secondary care rheumatology service to residents of central Manchester. The centre also provides a tertiary and regional service for Greater Manchester and the wider North West area for complex rheumatic conditions alongside lupus. The centre offers a regional joint obstetric/rheumatology clinic with healthcare professionals in Saint Mary’s Hospital and has two fulltime NHS consultants as well as two fulltime academic rheumatologists.
Royal National Hospital for Rheumatic Diseases - Bath (Official opening: March 2016)Led by: Professor Neil McHugh
The Royal National Hospital for Rheumatic Diseases’ rheumatology team provides both specialist and general rheumatology services for adults, children and adolescents. The hospital has an international reputation for their research into a range of rheumatic conditions, including lupus. This centre is one of the few in the UK who are dedicated to the treatment of complex regional pain syndrome and treat patients from the age of eleven years.
Louise Coote Lupus Unit - London (Official opening: September 2014)Led by: Professor David D’Cruz
The Louise Coote Lupus Unit is the largest lupus unit in Europe. They provide a wide range of services for patients with lupus and other autoimmune connective tissue disorders and anti-phospholipid (Hughes) syndrome. They are at the forefront of research in lupus and autoimmune connective tissue disorders, with their lupus research unit being a part of King’s College London. The Centre offers an online booking service for existing patients where they can book an appointment online for a nurse to call them if they need advice or help with diagnosis, medicines and concerns about symptoms that need to be addressed before their next appointment.
The Centre for Rheumatology at UCLH - London (Official opening: July 2012)Led by: Professor David Isenberg
The University College London Hospitals’ department of rheumatology has over thirty highly respected academics who are led by Professor Isenberg. Both adults and adolescents are treated at this centre; the centre also has close links with Great Ormond Street Hospital’s paediatric rheumatology service.
Dido, a multi-million selling singer, whose father was treated at this centre for lupus, helped unveil the plaque back in 2012 announcing that the UCLH’s centre for rheumatology was recognised as one of LUPUS UK’s Centres of Excellence.
criteria of a LUPUS UK 'Centre of Excellence'In order to be named a LUPUS UK ‘Centre of Excellence’ a lupus clinic must meet a range of criteria, outlined below, to ensure that they are offering a high standard of care for people with lupus. After receiving the award LUPUS UK Centres of Excellence are subject to regular assessments to be sure that the quality of the service is being maintained.
• Easy access to clinic; either at ground level or with a patient-friendly lift
• Toilets, preferably within or with close proximity to the department; with disabled and nappy changing facilities
• Privacy in changing/consultation rooms
• Comfortable surroundings and colours with patient friendly lighting
• Combined clinics; time-efficiency for patients as they do not have to attend different clinics on different days
• A dedicated lupus clinic with three or more consultants covering specialities e.g. Rheumatology/ Nephrology/Dermatology that are available to see patients, though not necessarily all on duty at the same time
• At least one consultant with specialist knowledge of lupus, with others having a good ‘working knowledge’ of lupus
• Dedicated specialist lupus nurse with other nursing staff having ‘working knowledge’ of lupus
• To have an ‘open door’ system for earlier consultation should problems arise between pre-booked appointments; patients having a ‘name’ to approach e.g. specialist nurse
• Multi-disciplinary team approach to patient care
• Consultants and nursing staff happy to liaise with LUPUS UK Regional Groups/Contacts/National Office
• Liaison of consultants/researchers with other hospitals and clinics within the UK and overseas
• Patients given reasoning for additional tests, investigations; having medication, potential side effects and procedures explained to them and being informed of results
• Consultants and nursing staff to update GPs by letter following each patient visit; also ensuring the patient has the option of receiving copies of these letters
• Having on-going lupus-connected research projects within the hospital
• Enabling organised, regular training of junior doctors and nursing staff in the management of lupus and research methodology
• Having up-to-date lupus information literature (e.g. leaflets) always available
• Helpline for general enquiries, not emergencies (may be shared e.g. Lupus/Rheumatology/Dermatology) and set up following consultation with medical staff/hospital
CRITERIA OF A LUPUS UK ‘CENTRE OF EXCELLENCE’ - CHILDREN’S UNITSLUPUS UK Centre of Excellence along with other criteria listed below:
• Parents/Guardians informed every step of the way
• Decorations around the clinic to be child orientated
• Examination bed to be child friendly in terms of access and height
• Appropriate-sized wheelchairs for departmental transfer
• A child-care room equipped with books/toys for various ages and TV
• Transition process from Children’s Clinic to Adult Clinic
• Suitable on-ward bath/shower/toilet facilities
• Parent/guardian overnight facilities
• Nursery nurse/Play leader
• Arrangements for educational support
• Counselling available for patients and family if and when necessary or helpful