Following on from the workshop held during the Helsinki convention, LUPUS EUROPE organised a Patient panel, bringing together 10 people living with lupus, from 7 countries, to share their experience about “treatment”, with a view to help improving the quality of life of people living with lupus. The Panel was conducted through a series of interactive presentations, team discussions and working groups, and resulted in the drafting of 3 letters addressed respectively to: People living with lupus, Patient Organisations, and the medical community; suggesting how they can each help in their respective areas.
The key points highlighted during the two day event were:
“Treatment” is broad; it is both medicine based and non-drug based, and can be categorised in three ways – core, medical, and well being. Treatment can be defined as any product or activity that aims at improving quality of life for the person with lupus.
Access includes ease of contact with Health Care Practitioners and support services such as orthotics as well as availability of medicines. The individual’s personal adherence can be reinforced or weakened by the relationship with the Health Care Practitioner.
Patients will take new medicine provided they understand the reasons why and the side effects; management of patient expectations in terms of medication (speed of noticeable effects) and relating to support staff are equally important for correct treatment compliance.
We noted a dual-faceted infusion experience, as viewed by the person with lupus; it can either be viewed as an experience which emphasises their own incapacity or one which they view as contributing to their long-term quality of life.
Patient Organisations have a critical role to play, creating a community, sharing reliable information, providing hope, raising awareness and advocating for lupus.