After the coffee break, Anne Charlet introduces the second session, focused on “Communication”:
Engaging to make things happen, by Nuria Zúñiga
“I was an Echo, but we need people to be their own voices”. Nuria explained how lupus changed her life and how getting into social media saved her life - she could identify a new goal, when she thought everything was finished. She started her own blog helping patients as other patients had helped her. She did not know about lupus groups, and so worked on her own. Many independent patients on social media are raising voices and are contacted by pharma companies. Nuria felt like she could reach the moon.
But she soon realised that once you have reached the moon you might feel alone like the “Petit Prince” of St Exupery. Joining patient associations, rowing in the same direction, achieves a lot more and truly makes change happen. You can be a voice, but it is a lot better if we can all have the same voice and talk together. Most of the 5M patients around the world are not in associations, and we are not taking advantage of their energy and power to change things. Nuria leveraged social media to reach out. She has ca 2500 visits/day from people asking about treatment, sex, side effects, talking about their fears, …. Social media and blogs give visibility on what organisations are doing. Going on social media to say where we need volunteers, explaining that you join a meeting, … you make your effort known and contagious. We need to hear not just about miseries and weakness, but also progress and success.
Nuria advocates that while we are doing many things, unless we communicate enough, we won’t get more people to engage. Social media also helps connecting with the people that you represent: making sure people see what you actually do, what you say, makes them already participate into your effort.
Anne expresses how important it is to be trained to properly blog & tweet. Nuria is an expert in that, and might help you grow that skill.
Message to Share, by Augusta Canzona
Augusta explained how the patient groups’ role is important in informing members, helping them through counselling, self-help groups, and psychological support; but also to help train doctors. Sharing information about treatment (what exists, its importance, …) in conferences with multiple targets really raises awareness. This can be done in doctor-patient meetings, educating patients or volunteers, disseminating information, … It is important that patients are aware of the treat to target initiative and of what a treatment strategy can look like.
In Italy, two specific activities are at the core of patient/doctor interactions : (a) Lupus Clinics are centres with multifunctional teams in all medical branches involved in lupus treatment, offering a unique point of contact (including for the family doctor), help-desk with priority access for emergency assistance, easy access to diagnostic resources and instruments and access to new, off-label, treatments; and (b) Training for doctors, through the tri-annual Pisa course for which Lupus Italy funds up to 10 bursaries. The course targets young rheumatologists and fosters international collaboration among experts, focusing on major clinical, pathogenic and therapeutic aspects of SLE.
Lupus organisations also can drive action and support to patients, particularly in the current financial crisis, where they can help avoid budget cuts affecting lupus patients, as well as help patients in financial difficulty find support.
To support this lobbying role, Lupus Italy collected, through an on-line survey, information on un-met needs and quality of life, with a special focus on joint pain. This research was developed, organised and interpreted by patients, with researchers’ support and obtained 550 patient responses. Interestingly 40% reported coexisting diseases, 55% get treatment in hospitals, but only 21% in lupus clinics. 83% reported bone and joint pain as a symptom or side-effect. Patients’ working life is the most affected, and 64% of patients are disabled workers. Lupus Italy is now using this research to improve awareness of patients’ situation at different levels and identify key issues (pain, access to resources, early diagnosis) to be further developed.
Messages from patients to groups, by Alain Cornet
Alain explained how the Helsinki LUPUS EUROPE Convention resulted in a patient panel focused on treatment, during which 10 diverse patients from all over Europe exchanged thoughts on adherence to treatment. One of the by-products of this panel has been the writing of 3 letters: one addressed to fellows living with lupus, which has been further used as part of the WLD “tame your lupus” campaign, one addressed to the medical community, which has been further developed as a poster presented here at ICL, and one containing the key messages that patients want to convey to Patient organisations.
This message starts with a big “Thank you”, and it is important, as patient leaders that we realise how thankful patients are for our support, information, and the role we play in breaking their isolation and forming a community. They urge us to reach out further to dermatologists or smaller hospitals to help a newly diagnosed person find community and support. Patients ask us to bring hope, encouragement, support and energy rather than a “sickness competition”.
They look to us to bring objective information, create moderated and reliable platforms to share experience and get answers from trained experts. They seek affordable and understandable literature, as well as tips on best practices and standards of care.
They also view our role to promote access to affordable treatment with right standards of care, reducing delays in treatment or duplicate testing, identifying lupus centres or clinics adhering to EULAR standards of care, and lobbying for access to sunscreen, particularly in the southern countries.
They also want us to convey to the general public, administrations and employers that even if we do not appear visibly sick, lupus has its toll on our health, but many of us can live almost a normal life if modest adjustments are made.
Finally, they offer to help, but starting with small things, so that, at the pace they determine, they fully take their place to help improve quality of life for all people with lupus.
In closing, Alain highlights that 6 videos have been produced with the support of UCB, providing direct testimonies of the participants on many aspects of lupus in their daily lives.