Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News!
We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Gaia VonÖrn from the Swedish Rheumatism Association who talked to us about the wonderful work the organisation is doing, the needs of lupus patients in Sweden and much more!
How do you keep in touch with or have contact with your members?
The Swedish Rheumatism Association was founded in 1945 and is an umbrella organisation in Sweden for all rheumatic diseases and other diseases of the musculoskeletal system. We have a website (reumatiker.se) with information on all rheumatic conditions, such as SLE, relevant news, information on new research, medicines et cetera.The association also has a magazine, “Rheumatism World”. This comes out every month and it covers the same news as the website. Many members still enjoy having all the news in a magazine and each member receives the magazine by post. All past and current magazines can be found on the website in electronic format too.
The National Association for Systemic Lupus Erythematosus (SLE) is one of the associations under the big umbrella of the Swedish Rheumatism Association. Our Lupus Association started on facebook. There we have a strong and active connection with our members and their families. We use Zoom to have our monthly board meetings. We also have regular lectures via zoom and schedule regular time slots on zoom with our members to ensure we get to know them, that they can speak freely about their symptoms and conditions with us and that we are continuing to spread awareness. The National Association for SLE used to hold regular meetings and gatherings in different municipalities in Sweden, but when the pandemic started all these in-person meetings had to be moved to online meetings. Our members appreciate these online meetings; through them a sense of community has stayed strong, but this lacks the personal feel of in-person meetings.
Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc)?
Yes! Since the pandemic started it most of our meetings have been online. We mostly use Zoom for our meetings and presentations and Facebook to update information and have chats with members.
For the National Association for SLE, World Lupus Day is one of the main events of the year. On World Lupus Day in 2021 we had lectures on Zoom from researchers and doctors; this proved very successful with many of our members and their families joining us online.
We run a monthly member gathering. This can be led by a certified nurse, a practitioner or just be an informal “coffee” chat with members and their families. We also have a monthly Board Meeting and an annual General meeting.
Has it been difficult to keep connected with your members during the Covid19 pandemic?
No. As we used the internet to communicate with our members pre-pandemic, the pandemic hasn’t affected our connection with our members. This has been very fortunate, as our members are scattered throughout the country.
Have there been any circumstances during the pandemic that changed the way of living with lupus?
Yes. At the beginning of the pandemic, it was difficult for our members to get their hydroxychloroquine. Due to the pandemic, it has, at times, been difficult to physically attend any clinics or hospitals. At the height of the pandemic operations were postponed and referral times grew. In most cases lupus patients could access virtual or telephone consultations with their doctors.
Many patients found the absence of hospital visits difficult. Others felt increased pressures to their mental health during the pandemic. For large parts of the pandemic, elderly people and high-risk patients (i.e. lupus patients on immunosuppressant medications) were confined indoors.
Has Digital Health improved or changed in your country?
In 2018 it became possible for anyone in Sweden to access their medical records through a dedicated website. This site also opened the door to digital communication between patients and doctors; patients could use a specific part of the website to write messages to their doctor. They were also able to use the website to order repeat prescriptions of medications or to access their latest health information (i.e. blood test results). On the same website, the Swedish Rheumatologist Quality Register (PER) is also used. The Swedish Rheumatologist Quality Register gives all patients with a diagnosed rheumatic disease the ability to register their symptoms such as pain, fatigue on a scale of 0 to 10 every week and doctors are able to access this Register and check on their patients’ reported symptoms.
Lupus is a notoriously difficult condition to diagnose, and it can have so many different symptoms for everyone affected. It can be very difficult to communicate all symptoms via a telephone consult without a physical examination. In some of the smaller districts in Sweden, it can take a very long time to have a consultation with a specialist; this can sometimes be due to staff shortages, as many people have gotten ill with covid. At the moment some people are receiving their lupus diagnosis through a letter or via telephone consultations; that is not the same as being told about the condition in an in-person consult and being able to ask questions in person.
What would you most need as support in your country for lupus?
Lupus is a rare, complicated, and difficult-to-diagnose disease. It can affect any part of the body and can cause a huge range of complications and symptoms. Some people may not have organ involvement and for others lupus may be life threatening. The condition can affect every part of a patient’s life and there is no specific knowledge on how to cope or how to ease the burden of living with this condition here.
People must be able to access specialist care for their lupus in order to get their disease under good control. We need a lot more awareness about lupus in Sweden. In our experience, GPs can have poor knowledge and awareness of lupus, and this can cause serious delays in referrals to rheumatology clinics for initial consults. Patients often have very late diagnoses and can develop complications from their lupus.
A specialised lupus clinic would be incredible to have. We hope to one day have a specialised lupus clinic where pain specialists, rheumatologists, nurses, physical therapists, occupational therapists, dieticians, social workers could all work together as a team.
We believe it is important for patients to have access to pain specialists. Many lupus patients suffer from chronic pain and it can take a very long time to access pain clinics. Pain specialists are crucial in educating patients on pain management and the options available to them and to follow up people to ensure their pain is well managed.
We want to increase the public’s awareness of lupus. To do that we need to get more people involved in our association, ready to act and contribute to public awareness campaigns.
Is there anything you think Lupus Europe could help your organisation with?
Yes. We would greatly appreciate collaborating for information sharing; we want to increase our knowledge so we can better serve our organisation, our members, and the public.
Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?
Having good quality information in languages other than English is important. Ensuring information is accessible to patients with sensory impairments is also important for webinars, websites and also for in-person Conventions.
Are you aware of the Lupus Europe Member Capacity Building Program?
No. We want to learn about it!
Could you tell us a bit about a dream you have as a group?
One of our dreams is to increase awareness of lupus in Sweden. Another one of our dreams is to have a post-diagnosis support group specifically for newly diagnosed patients and their families. Another dream is to have a specialised lupus clinic with a specialised team of professionals working collaboratively for lupus patients. We also dream researchers will eventually find a cure for lupus.
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