Lupus UK Centres of Excellence for Patient – Centred Care Award Scheme 

Summary

• The LUPUS UK Centres of Excellence for Patient Centred Care award scheme is designed to recognise high quality patient-centred approaches for people living with lupus in rheumatology services and specialist lupus clinics within hospital outpatient departments.
• The criteria on which centres are assessed are listed below. They are designed to consider what people living with lupus need and want from specialist services to help them ensure they can access care in the best possible way.
• The Lupus UK Centres of Excellence award does not include any assessment of the quality of clinical care as this is beyond the scope of Lupus UK as a patient charity.
• Any complaints or concerns about quality of clinical care or individual members of hospital staff should be addressed to the hospital team directly or via PALS (England), PALS (Wales) or PASS (Scotland) or PCC (N Ireland).
• Feedback around the patient-centred approaches of any centres can be submitted through a form on the Lupus UK website. This can be done anonymously.
• Lupus UK cannot respond to individual complaints or comments about patient-centred approach of any Centres but will collate feedback that will form part of the review process.
• Centres of Excellence will be reviewed every 3-5 years.

Award Process – New Centres

1. Lead clinician to fill in an application form from the website with
a. overview of the service
b. overview of the patient centred approach taken
c. rationale of seeking the award
d. evidence of how/where currently meeting criteria

2. Application Reviewed by the CofE Committee

3. If not accepted for review written feedback given and meeting offered with CEO/HIM.

4. If accepted for review
a. Lead clinician notified
b. Date arranged for review visit (3-6 months ahead)
c. Lupus UK Patient Survey for that centre live – social media, website, via the
applying centre (this is a requirement for review).
d. Feedback from the survey collated and shared in advance of the visit
e. Visit held
f. Report produced by the Committee – recommendation to the main Board or
feedback to lead clinician

5. If award agreed
a. Written confirmation sent to lead clinician
b. Lupus UK to arrange and send a plaque
c. Clinic to arrange a photo of team with the new plaque
d. Lupus UK to publicise via website, social media & News and Views

Review Process

• Centres of Excellence will be reviewed every 3-5 years.
• In between award and review, Centres commit to communicating to Lupus UK any substantive changes that could impact the criteria below, eg change of lead clinician.
• Lead clinician contacted 3-6 months in advance of review to arrange date
• Lupus UK Patient Survey for that centre live – social media, website, via the applying centre (this is a requirement for review).
• Process then follows as above.

Adult Units

Staffing
• Multi-disciplinary Team approach to patient care.
• 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.
• A named specialist nurse lead for lupus with other nursing staff having ‘working knowledge’ of lupus.

Appointments & Consultation 
• Patients should be offered an appointment with the named specialist nurse lead for lupus following a new diagnosis.
• ‘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.
• Combined clinics being held where possible so that patients do not have to move 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.

Helpline
• 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.

Communication
• Patients having reasons explained to them for additional tests, investigations (other than the usual accepted routine clinic testing e.g. blood, urine) and medications.
• 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.
(signposting to online records where available) 

Service Development
• Centres of Excellence should demonstrate how they are involving patients in the development of their services with a clear, transparent patient-to-clinic feedback mechanism.

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.
• Newly diagnosed patients signposted to Lupus UK website and provided with the Lupus UK main offer and helpline number. When the updated Lupus UK “New Diagnosis” Pack is made available, the criteria will be updated to include provision of that pack following a new diagnosis.

Networking
• Consultants/nursing staff happy to liaise with Lupus UK Regional Groups/Contacts/National Office.
• Liaison of consultants/researchers with other hospitals/Lupus Centres within UK and overseas.

Demonstrating Commitment to Expertise in Lupus 
• 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 – as above plus:

Staffing
• Multi-disciplinary and multi-speciality Team approach to patient care which includes support
for the family.

Communication
Age appropriate communication with Parents/Guardians and the YP
• having reasons for additional tests, investigations and medications explained to them.
• being informed of any possible side-effects of tests, investigations and medications.
• 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.

Facilities
• 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. 

In-Patient Care
• Suitable on-ward bath/shower/toilet facilities
• Parent/Guardian overnight stay facilities
• Play specialists
• 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 with a person-centred approach to supporting the young person with making the transition. 

Information & Education
• A pack of age-appropriate information should be supplied following a new diagnosis should be supplied following a new diagnosis.

Family Support
• Counselling support should be available for patients and family as out-patients as well as inpatients.