Where possible all patients with lupus should receive care in a dedicated SARD (systemic auto-immune rheumatic disease, sometimes previously referred to as connective tissue diseases, CTD) clinic that includes a consultant rheumatologist and a nurse specialist.

A full and up-to-date list of LUPUS UK Centres of Excellence is available HERE. LUPUS UK Centres of Excellence are always happy to provide support and advice in tricky cases. The nurse specialist plays a pivotal role in providing education, information, advice, support and counselling to patients and their family.

One of the most important roles of the nurse specialist is to support and advise patients especially in times of flare of the disease, or in discerning infection. Patients can learn to recognise ‘red flags’ when medical help is required urgently and can also learn ways of managing their unpredictable symptoms in different ways. By mastering self-management techniques, patients can manage difficult times and plan realistic achievable goals to remain in control of their lupus wherever possible.

All patients with lupus attending clinic should have their urine tested at every visit: blood and protein for indication of renal involvement, glucose for drug-induced or primary diabetes, and nitrites and leucocytes indicating infection. Mid-stream urine (MSU) tests should be requested to determine if there is a urinary tract infection (UTI). They should be weighed, as their weight can fluctuate dramatically due to steroid therapy, water retention, in some due to lack of mobility, and weight loss can be associated with significant flares (usually a change of +/- 10% or more). This weight loss or gain should be noted, alongside usual blood pressure and pulse monitoring. Blood tests are usually needed for general SLE monitoring, and for drug monitoring. They should also include, as needed, full
blood count (FBC), renal function, liver function tests (LFTs) CRP and ESR. Annually they should also include Vitamin D3 levels, thyroid function, and lipid profile (i.e. total cholesterol, and HDL cholesterol,) and diabetic checks (HbA1c, and random venous blood glucose.).

The nurse specialist appointment enables an opportunity to discuss concerns and worries, providing support and understanding in helping people to come to terms with the disease. In some cases patients with lupus have been undiagnosed for several years, and they feel frustrated that no one understands what they are going through. In most cases patients look reasonably well and it can be difficult for friends and relations to comprehend how unwell they feel.

Some of the important aspects of the nurse specialist consultation include the following:
• Diagnosis and treatment plans
• Enabling informed choice, shared decision making and providing time to talk
• Patient information leaflets prior to starting any new drugs with an opportunity to discuss any worries and concerns in detail
• Education and advice for the patient and importantly, family/significant others in helping them to understand lupus and its impact on the patient
• Access to on-going support via telephone advice line
• Developing collaborative clinics with consultants, where specialist consultants can combine approaches, where possible in the following specialist areas:
o Dermatology
o Respiratory / Pulmonary
o Renal
o Obstetrics
o Haematology
o Access to physiotherapy, occupational therapy, foot health services, hand therapy & psychological support services, such as Healthy Minds.

The specialist nurse and the patient should work together to address issues of worry and concern. Patients feel relieved to talk to someone who understands what they are going through. In a nurse-led clinic the specialist nurse can closely monitor the patient’s drug therapy and check through regular blood testing for toxicity or side effects, and can also check the patient’s blood pressure, urine and
further investigations can be organised as needed. Managing a flare is important for the patient to reduce risks associated with active disease and the nurse specialist provides a point of access to discuss as needed treatment changes with medical colleagues. It is also important to provide feedback on how long new therapies might take to work and to provide good advice for interim measures. Due to intermittent flares of constitutional symptoms, patients’ lives can be significantly impacted upon by their lupus and in some situations, regular support and help is required to enable the patient to live independently at home.

Telephone advice lines are provided in rheumatology units by specialist nurses, enabling support for patients between hospital appointments. GPs and other health professionals can call for advice and information as needed.

GENERAL ADVICE FOR PATIENTS

1. To listen and respond to their body, over time recognising significant symptoms that require immediate treatment such as symptoms effecting breathing, heart rate, or infections.

2. To rest and exercise regularly within any physical limitations of pain and fatigue, and develop the pacing of activities.

3. To eat a varied, healthy, and well-balanced diet.

4. To avoid excess exposure to the sun and always wear appropriate levels of sun block (above SPF 50 April to October at least daily even in the UK), and plan holidays carefully.

5. To manage and reduce stress levels where possible.

6. To become informed about health choices in order to manage symptoms and live a fulfilling life with lupus.

7. To ensure they are as up to date with relevant immunisations as possible (e.g. HPV human papillomavirus, pneumococcal and annual influenza.)