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Dear LUPUS EUROPE Members and Friends,
We have really enjoyed a great 2016 convention! Thank you Simone and Borgi for this beautfully organised event which kicked off the 2016-17 year in a very energetic way. We have not been inactive since, so here is some news from the past month…
LUPUS EUROPE BOARD APPOINTMENTS
Following the Trustee elections of October 2, the board of trustees met to assign the specific responsibilities defined in LUPUS EUROPE’s constitution. We are pleased to announce that the board has elected its members to the following positions:
Chair – Kirsten Lerstrøm
Vice Chairs – Katharine Wheeler and Anne Charlet
Treasurer – Kirsi Myllys
Secretary – Jeanette Andersen
Trustee in charge of projects – Sara Badreh
Katharine will focus her Vice-Chair role on members and LUPUS EUROPE operations. Anne will focus her Vice-Chair role on external and fundraising.
The board also agreed to appoint the following Co-opt advisors for mandates until the end of the 2017 convention:
Francesca Marchiori – Co-Opt Advisor in charge of the Patient Partners in Research programme.
Davide Mazzoni – Co-Opt advisor in charge of research.
Augusta Canzone – Co-opt advisor in charge of convention 2017.
The board also would like to take this opportunity to extend our very warm thank you to Blanca Rubio (Vice-Chair till convention 2016), Simone Pretis (Co-opt advisor in charge of convention 2016) and Nuria Zuniga (Co-Opt Advisor in charge of social media) for their services. Blanca was an incredible member of our team for many years, dedicated to the advancement of LUPUS EUROPE’s cause and that of people with lupus across Europe. Simone played a huge role in making such a success of the convention, and Nuria helped lead us to another level of social media activity before relocating to the Arabian Peninsula.
As you might remember from our 2016 convention, we are looking for members, who want to help us with our work. If you have any skills you believe could be helpful to us (such as translation work, writing skills, web programming etc.) or if you would like to help us in any of our ongoing projects (Kick Lupus, strategic planning, visiting conferences or seminars on behalf of LUPUS EUROPE etc.), please do not hesitate to contact us and we will find some way for you to help. LUPUS EUROPE’s board only consists of few people and we do need as much help as we can get from our members! Write to Jeanette at: jeanette@lupus-europe.org and tell us how you can contribute.
For the board,
Jeanette Andersen
Secretary
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PATIENT & FAMILY EMPOWERMENT FOR BETTER PATIENT SAFETY
On November 8-9, Katharine attended an EPF conference on “Patient & Family Empowerment for better Patient Safety”.
Patient safety is an issue that directly impacts all of us, and the objective was to understand the EU position on the subject, and what we can/should do about it. Katharine’s key take aways are as follows:
– Patient safety is a hugely complex issue which is not EU regulated – the EU can only make recommendations to member states who are ultimately individually responsible for their country’s health.
– Patient Safety is no longer on the EU’s priority list. This has to change!
– There are a number of barriers to creating effective patient involvement in patient safety but there seems to be a great deal of will to overcome those barriers, from all sectors, whether medical, hospital administration, pharmacists or patient organisations.
– There are a number of projects EU and world-wide where patient involvement has shown to be very beneficial. Those projects are still too rare and not considered common policy or wide-spread (even nationwide). They are mostly hospital administration led, rather than being part of general health policy.
– A multi-stakeholder and multi-disease group approach would seem to be the most effective way to move forwards coherently. It would also be very beneficial to be able to work within a “no-blame” policy so that harmful events are actually reported. They are currently believed to be under-reported by as much as 50%. As it stands, 1/10 hospital admissions lead to a harmful event (reported). Improvement can only be made if dialogue is open. Of course, patient safety is not confined to the hospital setting and it applies to both acute and chronic situations.
 In this event, Katharine was also the rapporteur of the “Patient-professional communication as a critical safety factor” workshop. This workshop recommended the following would help improve Patient professional communication:
– Multi-stakeholder collaboration to put communication strategies in place – the tools exist and can be learned.
– PO organised education in university settings on the importance of communication and its benefits (+ peer education).
– Perhaps it would be possible for doctors to obtain credits by participating in collaborative education initiatives with POs?
– Initiatives to encourage the “What matters to you?” approach from HCPs.
For further information, you can contact Katharine at katharine@lupus-europe.org
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EUROPEAN LUPUS MEETING, VENICE, OCTOBER 5-8 2016
The European Lupus Meeting is a scientific congress focusing on clinical practice and lupus research in Europe that takes place every other year. Around 1,000 registered attendees participated, the majority of them doctors from the rheumatology or immunology fields, but also various other specialties as well as some people from industry and a few patients.
ELM is a scientific meeting, so it is of interest to patients already involved or who wish to be involved at this level and who wish to bring their perspective to the research agenda. For LUPUS EUROPE it is also a great opportunity to meet and talk to lupus people we have not met before.
Patients’ Perspective in Lupus Research
Earlier this year LUPUS EUROPE called on all members and our online community to encourage submission of abstracts with a patient perspective for the scientific review at the European Lupus Meeting 2016.
We received 6 eligible abstracts – all 6 were accepted! Two for oral presentation in the programme, and three for poster view presentation, during different sessions. They addressed social aspects following diagnosis and living with a complicated chronic disease as well as bringing attention to the need to have more focus on these aspects in research as well. This is a fantastic success rate and we congratulate everyone for their hard work:
Two oral abstract presentations:
1. Marina Falanga presented on The Italian SLE web survey: ‘Investigating Patients’ unmet Needs and improving Care Systems through viable Online Survey Tools’.
2. Davide Mazzoni gave his oral presentation of ‘Social Support and Quality of Life in SLE’.
Three poster presentations:
1. Elena Forgione presented her poster ‘Sociocultural context;Mind-Body; Doctor-patient relationship’.
2. Amaia Dominquez presented her poster ‘Systemic Lupus Erythematosus Health-Related Quality of Life (HRQOL); Pain’.
3. and Kirsten Lerstrøm presented ‘Capabilities of European lupus groups; Members of LUPUS EUROPE’ on behalf of Blanca Rubio.
Patients were admitted without a registration fee which is a fantastic acknowledgement of the appreciation of patient involvement. No-one has funds to pay the rather large admission fee, if on sick leave or working on a voluntary basis.
For further information, you can contact Kirsten Lerstrøm at kirsten@lupus-europe.org
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EULAR KNOWLEDGE TRANFER PROGRAM
On behalf of Boryana Boteva, leader of EULAR´s Knowledge Transfer Programme, EULAR kindly welcomes project proposals from patient organisations who wish to improve their skills by learning from the experience of other organisations in the network.
The programme is open to EULAR member organisations of PARE and organisations with co-opted delegates in the Standing Committee of PARE.
Applications can be received by 31 December at the latest.
More information and applications forms on http://www.eular.org/pare_knowledge_transfer_prgm.cfm
Please do not hesitate to get back to EULAR for clarifications at any time! Also, please send in draft ideas or ask for help with some thoughts, they can refer you to experts!
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WORLD ARTHRITIS DAY – EULAR CONFERENCE ON REDUCING THE BURDEN OF CHRONIC DISEASES IN THE WORKPLACE
On October 12, World Arthritis Day, Jeanette Andersen attended the EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference focused on identifying and discussing relevant issues related to the working environment and how to move forwards.
 The conference was opened by EULAR president Prof. Gerd R. Burmester, who addressed the issue of people with chronic conditions being a burden on society. The question to ask is “Do we need new policies for better working conditions and the retention of sick people at work?” In order to answer the question, we first have to ask an additional question: “How well is Europe doing in preventing musculoskeletal diseases in the workplace and facilitating people with RMDs to stay in work? What else needs to be done?”
After the opening session Laurène Souchet, policy Officer at EPF, talked about the main challenges in health and safety at work for people with chronic conditions. Dr. Rikke Helene Moe, a physical Therapist and researcher at National Advisory Unit on Rehabilitation in Rheumatology in Norway told us, that “Work is good”! She pointed out, that studies have shown how preventive strategies, such a healthy lifestyle and maintaining a job, can help improve the clinical impact of RMDs.
Antonio Cammarota, Head of the OSH Committees and International Relations Team, DG Employment and Social Affairs, European Commission spoke on how the EU intends to reduce the burden of RMDs and other chronic diseases in the workplace through legislation and policy initiative developments.
Lastly before participants broke off into workshops, Marious Coloumas, EULAR Vice-President representing People with Arthritis/Rheumatism in Europe (PARE) gave the patients´ point of view, when it comes to preventing RMDs and including people with RMDs in the workplace.
Participants were then divided into the three different workshops:
1. Primary, secondary and tertiary prevention of RMDs in the workplace: What legislation and policy  initiatives do we need?
2. Dealing with RMDs in the workplace: How to improve access to occupational health professionals and therapists?
3. How to facilitate the retention of people with RMDs in the workplace as well as the return to work after sick leave?
Possible answers to these questions were then presented on slides.
Before closing today’s conference, a panel debate was held on the subject: Do we need better EU legislation to reduce the burden of RMDs in the work place?
On the panel were: Biljana Borzan (Member of the European Parliament) | Antonio Cammarota (Advisory Committee on Safety and Health at workplace, DG Employment and Social Affairs, European Commission) | William Cockburn (Head of the Prevention and Research Unit, European Agency for Safety and Health at Work) | Marina Monaco (Advisor, European Trade Union Confederation) | Patrick Gibbels (European Small Business Alliance), Prof. Anthony Woolf (Universities of Exeter and Plymouth & EULAR) and as a moderator: Cathy Smith (Journalist).
The main outcome of the debate was that new policies/laws in the workplace may not actually be needed. Perhaps it is enough to make sure, that existing laws are implemented more rigorously by each EU member state.
All of today’s results will be communicated directly to EU policy makers to improve conditions at the European level.
For more information, please contact Jeanette Andersen (jeanette@lupus-europe.org)
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