Today is World Arthritis Day. A day being honoured by The EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference is focusing on identifying and discussing relevant issues related to the working environment and how to move forwards.

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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 ill 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 staying 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?
  1. Dealing with RMDs in the workplace: How to improve access to occupational health professionals and therapists?
  1. 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.

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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), tbc | 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.

Jeanette Andersen

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1 week ago
LUPUS EUROPE

During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients.

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study.

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients' experience & state of mind as well as to objectify emerging signals of new shortages in Poland.

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern.

How did hydroxychloroquine affect you?
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

lupus.bmj.com/content/10/1/e000895
... See MoreSee Less

During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients. 

Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study. 

Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

Furthermore, we conducted a follow-up survey that showed the following:
1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients experience & state of mind as well as to objectify emerging signals of new shortages in Poland. 

This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern. 

How did hydroxychloroquine affect you? 
Did you feel anxiety during that period?
Did your physician warn you about the shortage and advised you on what to do?

https://lupus.bmj.com/content/10/1/e000895Image attachmentImage attachment+3Image attachment
1 week ago
LUPUS EUROPE

Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

www.eular.org/pare-stene-prize📣 Meet the 2023 #EULAR Edgar Stene Prize Jury!

🏆 The call for essay submissions have now closed and winners will be announced on 15 March!

Learn more about the #EULARStenePrize here 👉 pulse.ly/wforpnid8f

Register to #EULAR2023 👉 pulse.ly/r1xt9zca9p
... See MoreSee Less

Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!  

The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

Learn more about this competition:

https://www.eular.org/pare-stene-prize
1 week ago
LUPUS EUROPE

Sara, our Patient Advisory Network (PAN) coordinator, invites you to take part in our #kicklupus competition.

Remember that you can participate by sending your testimonial in your own language to zoe@lupus-europe.org.

Let's tell the world how volunteering for a #lupus organisation has helped change our life!

This competition is open only to people living in Europe with a diagnosis of lupus who are volunteers in a European Lupus organisation.
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1 week ago
LUPUS EUROPE

Oh wow 🤩!

Due to unforeseen circumstances, we have 2 spots left for our Senior Panel!

If you live in Europe and have been diagnosed with #lupus before 2000, don't think twice and come to Barcelona with us!

The deadline for applications is this Friday!

Watch the video to make sure you fulfil the requirements and get to know more about this exciting opportunity!
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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