This post marks the start of a regular blog series for Lupus Europe. We aim to have a dedicated blog with a different National Member each month. We are very excited about this blog series and getting our National Member news out to the world, so more people can find out a lot more about what it is happening in each country and each organisation!
Read on to find out all about the magnificent work that the Lupus Group of the Icelandic League Against Rheumatism is doing!
How do you keep in touch with or have contact with your members?
There are 200 to 300 people with lupus in Iceland. We have a facebook page, but we don’t use that a lot. We do have a closed facebook group and that’s our main method of keeping in touch with our members; we use that to communicate, people can put questions or comments and talk to each other in that group.
Members can contact us through the Icelandic League of Rheumatism office or through the facebook group directly. Iceland is a very small country, thankfully most of the people in Iceland that have lupus are in our facebook group!
We also have a section of the newsletter of the Icelandic League Against Rheumatism that is available to us to use to write articles or share information about lupus with our members.
We also have regular group meetings. There, our members have the opportunity to meet in person – we normally have one in-person meeting each month.
Did you have any special meetings or webinars during the past year (i.e. World Lupus Day, Rare Disease Day, Annual General Meeting etc)?
No, we didn’t. This past year was very different because of the pandemic. Unfortunately we were not even able to have our regular in person meetings this past year. Iceland, unlike a lot of other countries, did not go into lockdown, but we did have restrictions. Throughout the year we were waiting for a chance to re-start our regular in person meetings, but that did not happen because of the restrictions.
As a result we started exploring the idea of virtual meetings instead of in person meetings for members. A lot of our members were initially not comfortable with the idea of having virtual meetings, but we had one initial exploratory virtual meeting and it worked great in practice.
In the future we have an ambitious plan! We are planning to have one meeting in person and one virtual meeting each month. We will do this because we noticed that different groups of people tend to attend the in person versus the virtual meetings, so this way we hope to increase attendance to meetings and engage more members.
Has it been difficult to keep connected with your members during the Covid19 pandemic?
Yes. Thankfully we already had a facebook group set up before the covid19 pandemic, we use that as our main method to communicate with our members and that really helped.
Have there been any circumstances during the pandemic that changed the way of living with lupus?
Yes. Of course everyone has become more isolated as a result of the pandemic. But actually a real difficulty for people with lupus in Iceland was that it was really difficult to determine the level of risk that covid19 posed for us. There was a real lack of information about that. A lot of people took matters into their own hands, took their kids out of school and stayed home. At the same time it was really hard to get in touch with the local lupus specialists. There is only one university hospital that has lupus specialists here and all the specialists were redirected to work with covid19 patients, so lupus patients were left without a service from their doctors all of a sudden. And without information about how much risk they could be in from covid19 because of their lupus or how careful they needed to be to protect themselves from covid19.
Having said that, restrictions on how many people can be in the same indoor space depending on the size of the space et cetera have also been implemented nationwide. That means there are now a lot of options for people to work from home. This has been a blessing for a lot of people with lupus.
Has Digital Health improved or changed in your country?
Yes. There are very few lupus specialists in Iceland, so getting an appointment with one of them can be hard under any circumstances. There are no virtual appointments for specialists at the moment, everyone has to attend appointments in person still, but obviously maintain social distancing rules etc.
Specialists are split at the moment between those who look after covid19 patients and those who don’t. Specialists who do not work with covid19 patients can have clinics for their non-covid patients in person. Specialists who do work with covid19 patients cannot have in person clinics for non-covid patients. So a lot of lupus patients have to do phone reviews with our specialists with an option to e-mail pictures et cetera through if needed. If there is a clinical need for people to be seen in person, that does happen and people can be reviewed by a specialist who does not look after covid patients in that case.
Importantly in terms of digital health we have a webpage all the general practitioners are a part of and all the pharmacists. In the future all the specialists will be members of this page too. People can contact their GP through that webpage and order medicines through their pharmacy online. So it’s now much easier to be in contact with your GP and pharmacy.
What would you most need as support in your country for lupus?
Information. We have so few lupus specialists in Iceland and they are all so incredibly busy; it can be very hard to get reliable information about lupus. There is no team around the patient. When someone gets diagnosed with lupus here, that’s it. There’s no wrap-around support where a team of professionals tells a person what they now have to do or gives people information about what lupus is, their medication et cetera
There are three rheumatologists who are highly specialised in lupus in Iceland. They all support our group – they tell their patients about our group and point people to us. But if people are diagnosed through a different rheumatology service, then they do not learn about our group and they receive no support from us. Some people come to us a number of years post-diagnosis having had had no support from a group like ours and no information about lupus. As a result people that get a lupus diagnosis in Iceland can be frightened as they have no access to reliable information about lupus. Access to good, reliable information is so important for patients.
Also people turn to us as a group and we don’t have anything to give them in terms of information, we would very much like to have a pamphlet with information about lupus to give people or an information pack we can give out. We, however, don’t have anyone to write articles for us about lupus. If we had articles or pamphlets, we could then translate them.
As a group having access to lectures about lupus would be very helpful for our members too. During the Lupus Europe 2020 convention, people were talking about online seminars that some organisations have for people with lupus – it would be good to have access to online seminars or lectures like that. Most people in Iceland speak very good English – so having access to information in English would be excellent if we’re allowed to use that and share it with our members.
We have very good access to medicine and healthcare in Iceland, we have almost free healthcare. So the situation with people who are diagnosed with lupus is actually very good. People can be kept stable after they’re diagnosed as we have good access to medicines et cetera. But it’s hard for people to get access to that information and to find out what the situation actually is. People need access to information. As a group we would like to have an information pack to give out to members so they can have reliable information.
Historically there has been poor lupus awareness in Iceland even within the medical community. This is now getting better and lupus awareness is increasing. As a group we have noticed that more and more people in our group have been getting diagnosed after being ill for a short period of time, which is positive.
Is there anything you think Lupus Europe could help your organisation with?
Yes! Lupus Europe could help us by providing us with information. It would be very useful if Lupus Europe could give us articles about lupus that we could translate and then publish. We are not specialists and we cannot write articles ourselves because of that – we need articles with reliable information that we can publish for our members in Iceland.
We could also use some help with access to seminars about lupus. And it would be good to have some help on how to activate members to participate more actively in the group.
Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?
From what we’ve seen of the work Lupus Europe is doing, we are very happy with everything. This is all very new to us with Lupus Europe; we are not new members but due to the 2007 Icelandic financial crisis there have been some historic difficulties in terms of funding our membership with Lupus Europe. We would, however like to be full members. And we hope to be able to work closely with Lupus Europe on a number of issues around lupus!
Are you aware of the Lupus Europe Member Capacity Building Program?
Could you tell us a bit about a dream you have as a group?
Our dream is to be more active, to be able to raise more awareness and to have a larger platform so we can reach more people with lupus!