SLE (systemic lupus erythematosus or lupus) is a multi-system auto-immune connective tissue disease of unknown aetiology. Common presenting features include flitting arhralgias usually without erosive damage to joints, erythematous rashes, mouth ulcers, hair loss, headaches and depression. In many the disaese is mild and controllable, but in some the disease can be life threatening with multi organ involvement when the disaese is most active.
Clearly assessing and managing an unpredictable disease such as SLE is challening to the specialist lupus team and problematic for the individual. Potentially impacting on all areas of everyday life, SLE is very difficult to live with and requires resilience and fortititude. It is this aspect of the disease trajectory that is the most important for the lupus specialist nurse who provides support, advice, education and counselling to lupus patients and their families as needed.
Lupus specialist nurses assess for evidence of disease activity and formulate treatment plans in agreement with the specialist team and patient. By fully involving the patient in their care, the specialist nurse is available to provide information about potential risks, alerting the individual to the red flags that need immediate action and guide the patients in the development of self management skills to improve outcomes.
Key messages from this session include:
– To gain an understanding of the important role of the lupus nurse specialist
– To recognise the importance of easy access to specialist lupus teams when the disease is most active
– To understand the importance of empowering the patient to gain control of their disease activity and to improve outcome.
Disclosure of Interest None Declared