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.