Lupus UK Centres of Excellence
The LUPUS UK Centres of Excellence award scheme is designed to recognise and reward specialist lupus clinics that offer a high quality of care for people with lupus and to ensure that these standards are maintained. We hope to award more centres with this accolade in the future, meaning that more people with lupus will receive better care and hopefully improved outcomes as a result.
Lupus UK Centres of Excellence
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.
Lupus UK Centres of Excellence
THE KELLGREN CENTRE FOR RHEUMATOLOGY- MANCHESTER (OFFICIAL OPENING: OCTOBER 2007)
Led by: Professor Ian Bruce & Doctor Ben Parker
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.
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.
Lupus UK Centres of Excellence
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.
Lupus UK Centres of Excellence
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.
Lupus UK Centres of Excellence
ROYAL NATIONAL HOSPITAL FOR RHEUMATIC DISEASES – BATH (OFFICIAL OPENING: MARCH 2016)
Led by: Professor Neil McHughThe 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.
Lupus UK Centres of Excellence
ADDENBROOKE’S HOSPITAL – CAMBRIDGE (OFFICIAL OPENING: JULY 2018)
Led by: Dr Natasha Jordan
There has been a vasculitis and lupus clinic at Addenbrooke’s Hospital since 1987 and it currently cares for over 1,000 patients. The medical staff includes NHS consultants who have all been trained in kidney medicine and have many years experience in managing autoimmune conditions. Specialist registrars also work in the clinic under the supervision of the consultants.
Yvonne Norton, Peter Norton, Jan Roberts and Chris Maker represented the charity at the presentation of the LUPUS UK Centre of Excellence award to Addenbrooke’s Hospital on the 4th July 2018. Professor Graham Hughes assisted in the presentation and hospital consultants Professor David Jayne, Dr Frances Hall and Dr Natasha Jordan, who led the Centre of Excellence application, were present to accept the plaque. Staff and members of Cambridgeshire Lupus Group took part and Chair Davina Frost, in her address gave a tribute to Shelagh Cheesman, whose husband was a very special guest at the event.
Lupus UK Centres of Excellence
BARTS HEALTH LUPUS CENTRE – MILE END (OFFICIAL OPENING: NOVEMBER 2019)
The Centre is a multi-professional clinical and academic centre dedicated to the care of patients with Systemic Lupus Erythematosus. The Centre runs two weekly clinics:
– Wednesday mornings at The Royal London Hospital (Mile End site)
– Tuesday mornings at Whipps Cross Hospital
Staff from different disciplines (rheumatology, renal, dermatology, immunology, nursing, physiotherapy, psychology, nutrition and research) work together within the hub allowing for rapid patient access to a team of onsite specialists. The Centre cares for more than 500 lupus patients.
Lupus UK Centres of Excellence
GREAT ORMOND STREET HOSPITAL – LONDON (OFFICIAL OPENING: FEBRUARY 2021)
Great Ormond Street Hospital has the largest and oldest paediatric lupus service in the UK, dating back to 1999, and currently treats one of the largest cohorts of patients with the condition.
The hospital provides a highly specialist service for patients with lupus, which works within the general rheumatology service, but also links in with other departments including dermatology, nephrology, neurology, ophthalmology and, cardiology.
LUPUS UK’s Chief Executive, Paul Howard, and Vice-Chair and Trustee, Yvonne Norton attended the virtual ceremony on Wednesday 24th February 2021.
Lupus UK Centres of Excellence
UNIVERSITY HOSPITAL SOUTHAMPTON (OFFICIAL OPENING: MARCH 2021)
The Southampton clinic was set up in October 2002 by consultant rheumatologists Professor Chris Edwards and Dr Brian Davidson with a commitment to ongoing research looking into the causes of lupus and an aim to develop innovative and pioneering treatments for the disease.
The clinic cares for more than 700 patients and has three lupus consultants and two specialist nurses.
Professor Edwards expressed his delight when accepting the award during the virtual ceremony “To be recognised with this award means so much to us all as it is all about patient care and experience and that has been the driving force behind everything we do.”
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. The criteria were last revised in November 2022.
ADULT UNITS
Staffing
• Dedicated lupus clinic with three or more consultants covering different specialities e.g. Rheumatology, Nephrology, Dermatology, to be available to see patients, though not necessarily all on duty at the same time.
• At least one consultant to have specialist knowledge of lupus with the others having a good ‘working knowledge’ of lupus.
• Dedicated Specialist Lupus Nurse with other nursing staff having ‘working knowledge’ of lupus.
• Multi-disciplinary Team approach to patient care.
Appointments/Helpline
• ‘Open Door’ system for earlier consultation should problems arise between pre-booked appointments, patients having a ‘name’ to approach in this regard e.g. medical secretary, Specialist Nurse.
• Patients should be offered an appointment with the Specialist Lupus Nurse following a new diagnosis.
• Helpline with message facility for general patient queries – not emergencies. This may be shared e.g. Lupus/Rheumatology/Dermatology and set up following consultation with medical staff/management.
• An email “helpline” facility should be provided in addition to the telephone line.
• Patients who call the helpline should receive a response within two working days.
• Combined clinics being held so that patients do not have to trek between departments/sites or attend different clinics on different days.
• Patients should be presented with the option to request a face-to-face appointment if they are offered a telemedicine consultation.
Communication
• Patients having reasons for additional tests, investigations (other than the usual accepted routine clinic testing e.g. blood, urine) and medications explained to them.
• Patients being informed of any possible side-effects of tests, investigations and medications.
• Patients being informed of results of tests and investigations as necessary.
• Consultants/Specialist Nurse to update GPs by letter following each patient visit to clinic with patients having the option of receiving copies of these letters.
• Centres of Excellence should demonstrate how they are involving patients in the development of their services.
Facilities
• Easy access to clinic – either at ground level or with patient-friendly lift.
• Comfortable surroundings/lighting/colours in clinic.
• Privacy in changing/consultation rooms.
• Toilets, preferably in department or close by, with disabled/nappy changing facilities.
Information & Education
• Up-to-date lupus information (leaflets etc) always available and sited at discretion of consultant/ Specialist Nurse.
• A pack of LUPUS UK literature should be supplied following a new diagnosis.
Networking
• Consultants/nursing staff happy to liaise with LUPUS UK Regional Group/Contact/National Office.
• Liaison of consultants/researchers with other hospitals/Lupus Centres within UK and overseas.
Research
• On-going lupus-connected research projects within the hospital/Lupus Centre.
Training
• Organised and regular training of junior doctors and nursing staff in the management of lupus and research methodology.
PAEDIATRIC UNITS
Staffing
• Dedicated lupus clinic with three or more consultants covering different specialities e.g. Rheumatology, Nephrology, Dermatology, to be available to see patients, though not necessarily all on duty at the same time.
• At least one consultant to have specialist knowledge of lupus with the others having a good ‘working knowledge’ of lupus.
• Dedicated Specialist Lupus Nurse with other nursing staff having ‘working knowledge’ of lupus.
• Multi-disciplinary Team approach to patient care which includes support for the family.
Appointments/Helpline
• ‘Open Door’ system for earlier consultation should problems arise between pre-booked appointments, patients having a ‘name’ to approach in this regard e.g. medical secretary, Specialist Nurse.
• Patients should be offered an appointment with the Specialist Lupus Nurse following a new diagnosis.
• Helpline with message facility for general patient queries – not emergencies. This may be shared e.g. Lupus/Rheumatology/Dermatology and set up following consultation with medical staff/management.
• An email “helpline” facility should be provided in addition to the telephone line.
• Patients who call the helpline should receive a response within two working days.
• Combined clinics being held so that patients do not have to trek between departments/sites or attend different clinics on different days
• Patients should be presented with the option to request a face-to-face appointment if they are offered a telemedicine consultation.
Communication
• Parents/Guardians having reasons for additional tests, investigations (other than the usual accepted routine clinic testing e.g. blood, urine) and medications explained to them.
• Parents/Guardians being informed of any possible side-effects of tests, investigations and medications.
• Parents/Guardians being informed of results of tests and investigations as necessary.
• Consultants/Specialist Nurse to update GPs by letter following each patient visit to clinic with parents/guardians having the option of receiving copies of these letters.
• Centre of Excellence should demonstrate how they are involving patients in the development of their services.
Facilities
• Easy access to clinic – either at ground level or with patient-friendly lift.
• Comfortable surroundings/lighting/colours in clinic – decorations child-orientated.
• Privacy in changing/consultation rooms – examination beds child-friendly (height, access).
• Appropriate-size wheelchairs for departmental transfer.
• Child-care room equipped with books, toys for various ages, TV.
• Toilets, preferably in department or close by, with disabled/nappy changing facilities.
In-Patient Care
• Suitable on-ward bath/shower/toilet facilities
• Parent/Guardian overnight stay facilities
• Nursery Nurse/Play Leader
• Arrangements for educational support.
• Counselling available for patients and family if and when necessary or helpful.
Transition
• Transition process from Children’s Clinic to Adult Clinic in place.
Information & Education
• Up-to-date lupus information (leaflets etc) always available and sited at discretion of consultant/ Specialist Nurse.
• A pack of age-appropriate information should be supplied following a new diagnosis.
Family Support
• Counselling support should be available for patients and family as out-patients as well as in-patients.
Networking
• Consultants/nursing staff happy to liaise with LUPUS UK Regional Group/Contact/National Office.
• Liaison of consultants/researchers with other hospitals/Lupus Centres within UK and overseas.
Research
• On-going lupus-connected research projects within the hospital/Lupus Centre.
Training
• Organised and regular training of junior doctors and nursing staff in the management of lupus and research methodology.
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