This blog post is our second in this series; we are so 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! We are committed to have a dedicated blog with a different National Member each month.
We caught up with Stalo Christoforou who talked to us about the wonderful work that the Lupus Group of the Cyprus League Against Rheumatism is doing, the needs of lupus patients in Cyprus, COVID19 and so much more!
How do you keep in touch with or have contact with your members?
We have various ways of keeping in contact with our members. Our lupus group is part of the umbrella group CYPLAR (Cyprus League Against Rheumatism). CYPLAR has a facebook page and Instagram page and we often use that to communicate with our members. The lupus group also has a closed facebook group and we use that to communicate a lot with our members, have discussions and announcements about events or webinar opportunities.
We also use telephone calls, e-mails and text messages to communicate with our members. It is worth saying that our lupus group has a dedicated website where members and the public can find information about lupus and about our group (This is: www.lupuscyprus.com ) .
Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc)?
Due to the pandemic we were not able to organise our yearly in person meeting this year. We conducted our Annual General Meeting and Annual General Assembly through Zoom. We also had a webinar in October 2020 with a rheumatologist; the theme of this webinar was Lupus – latest news concerning the covid19 pandemic in our lives.
Has it been difficult to keep connected with your members during the Covid19 pandemic?
The way we have kept connected with our members hasn’t changed this year, as we already had an established facebook page and closed facebook group and we used them regularly to communicate with our members since before the pandemic.
Because our meetings this year have taken place online, more people were able to join as this required no travel and less time out of their day. In this way we had the chance to welcome new members to our meetings not only from Cyprus, but from Greece as well!
We were also able to attend webinars by other groups, such as a webinar by ELEANA (Hellenic League Against Rheumatism) or a webinar by the Cretan Group Against Rheumatism; these were both on the pandemic, medication availability and vaccines for people with rheumatism. So we have actually been able to attend more events this year because of the way everything has taken place online due to the pandemic.
Have there been any circumstances during the pandemic that changed the way of living with lupus?
Actually yes. Our daily life has changed a lot throughout this pandemic. During the first six months of the pandemic, all regular doctors’ appointments. Lupus patients could only be seen by their specialists in emergency situations. We were unable to continue physiotherapy sessions or attend our regular exercise programmes at gyms or other indoor spaces (i.e. pilates etc). One positive was that a volunteer body was created during the first lockdown whose aim was to help patients with chronic illnesses get medications delivered from pharmacies to their homes; this was a positive step!
In Cyprus we’ve had two lockdowns until now and they have been quite strict lockdowns. We are allowed to leave home for a small list of essential reasons only and even then we have to send text messages to a government number to get permission to leave home for these essential reasons.
Throughout the pandemic people with lupus have been very anxious about how our health might be affected if we catch covid19, because of our weak immune systems; we are all clinically vulnerable. Many people with lupus have been psychologically affected by lockdown; people’s mental health has suffered.
A lot of people with lupus in Cyprus now work from home. This was not an option before the pandemic. For some people with lupus working from home is very good; however, this is not a feasible option for everyone and it very much depends on the type of work one does.
Has Digital Health improved or changed in your country?
During the first wave of COVID19 we were unable to visit the doctor; all doctors’ visits were stopped. Lupus patients found creative ways to contact our specialists, we had telephone reviews and we sent our specialists messages and pictures through e-mail or social media. Our doctors sent us prescriptions for our regular medication through the national health system, as always. During the first lockdown in Cyprus all hospital treatments stopped. That meant that people with lupus who were on medications requiring hospital attendance, such as rituximab or cyclophosphamide, were unable to have access to their medication. Everything was cancelled.
Thankfully during the second national lockdown people with lupus are able to have their infusions. We are also thankfully able to see our doctors in person again and able to have regular review appointments. Of course, we maintain social distancing measures throughout hospital or clinic visits.
What would you most need as support in your country for lupus?
This may sound unusual, but in Cyprus we don’t have inpatient rheumatology or inpatient lupus clinics. We desperately need this to change. We have pointed out the necessity of specialised inpatient lupus clinics, staffed by specialised rheumatologists and specialised nurses, for years. This model exists in a number of EU countries and we believe it leads to people having access to the most appropriate treatments and the best outcomes.
This lack of specialised inpatient lupus clinics creates a lot of problems for lupus patients in Cyprus and this is especially obvious in emergencies. In a lupus flare or lupus ‘emergency’ a lupus patient here would have to attend the hospital’s emergency department and then be admitted to a general medicine ward. They would then be seen by the general medicine doctor (i.e. internist) who happens to be on call that day. Lupus patients in Cyprus are reviewed by general medicine doctors when they are inpatients, not by specialist rheumatologists. This can make things incredibly difficult for lupus patients.
Planned admissions thankfully are a bit different in that a specialist rheumatologist can arrange for a planned admission to take place under his/her care. However patients are once again admitted to general medicine wards, not specialised rheumatology or lupus wards.
Over the last year a day care unit has been created for lupus patients under the care of a rheumatologist; this is used for planned day admissions only, such as for people who need to have an infusion or treatment in hospital.
Another thing we need support in Cyprus with are campaigns. Campaigns are very important; they are a way for people to achieve real improvements in the diagnosis and treatment of lupus patients and they also serve to make the general public more informed about lupus. We very much need to have more awareness campaigns, especially social media campaigns, but to do this we need fundraising. Campaigns can cost a lot and unfortunately fundraising has decreased during the last year due to the pandemic and two lockdowns.
Is there anything you think Lupus Europe could help your organisation with?
In Cyprus, patients with lupus are unable to get any vitamins or sunscreens on prescription even when these are necessary for a person’s medical treatment. Vitamins and sunscreens are not allowed to be prescribed through our national health system, so – as lupus patients – we have to buy them. We need help from Lupus Europe to change this and to make vitamins and sunscreens available on prescription for anyone with lupus who needs them.
People with chronic diseases in Cyprus used to have free medical care and a range of our medication also used to be free of charge. Unfortunately this has now changed; people with chronic diseases now have to pay a contribution for medical care and prescriptions. This is not means tested and it means the cost of our health has increased significantly for lupus patients in Cyprus.
We also need help with funding for our programmes and help to create the first specialised, inpatient lupus clinic in Cyprus!
Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?
As mentioned above, the most important issue in Cyprus is that we don’t have a specialised, inpatient lupus clinic.
We also lack rehabilitation services through our national health system. There is only acute care for issues that require rehabilitation (i.e. for a stroke). Rehabilitation services that may be needed only exist privately; that means that as the cost is prohibitive for many people, not a lot of people can access these services. There is no option to do this through the national health system. This is a big issue.
Physiotherapy is another difficulty. Through the national health system we can only have 12 physiotherapy sessions a year even for a chronic condition like lupus and even if, medically, some people need a lot more physiotherapy than that. Unfortunately in Cyprus, if someone needs more than 12 sessions per year, they have to pay for them privately. Lupus Europe could perhaps help with these issues by getting into discussions with CYPLAR, with our ministry of health and with EU partners to help raise awareness and inspire some change.
Are you aware of the Lupus Europe Member Capacity Building Program?
No. We would like to know about this however, including the possibility of getting practical support for our programs and goals.
Could you tell us a bit about a dream you have as a group?
Our biggest dream is to have a specialised, inpatient lupus clinic in Cyprus! Another dream of ours is to increase awareness for newly diagnosed people with lupus and their families, to empower our existing members and to be able to make decisions regarding our health according to EU standards!