Sweden: Stora Skondal to close

Kalliope

Kalliope

Senior Member (Voting Rights)
Split from the News from Scandinavia thread

The Swedish ME Association RME says on their facebook page today that Stora Sköndal is going to close.

Stora Sköndal is a big foundation just outside Stockholm that works with several different patient groups, including ME. For several years they've had a ward accepting ME patients from all over Sweden for assessment, treatment and followup, both adults and children. A while back there were so many ME patients that wanted to come to them, they had to stop accepting new patients for several months until they could hire more people. They've also been involved with research and been active participants at conferences spreading updated knowledge about ME.

I am not sure if it's the whole foundation or the ward for ME patients specifically that will be closing.

Does anyone have more information about this?

 
Last edited by a moderator:
Kalliope said:
The Swedish ME Association RME says on their facebook page today that Stora Sköndal is going to close.

Stora Sköndal is a big foundation just outside Stockholm that works with several different patient groups, including ME. For several years they've had a ward accepting ME patients from all over Sweden for assessment, treatment and followup, both adults and children. A while back there were so many ME patients that wanted to come to them, they had to stop accepting new patients for several months until they could hire more people. They've also been involved with research and been active participants at conferences spreading updated knowledge about ME.

I am not sure if it's the whole foundation or the ward for ME patients specifically that will be closing.

Does anyone have more information about this?

Click to expand...

It's absolutely devastating news, a massive loss, very very sad :cry: It's by far Sweden's best biomedical ME clinic, especially for people with severe/very severe ME, and some of the best ME professionals in the country are working there, like Per Julin and Ewa Wadhagen Wedlund.

It's absolutely heartbreaking on so many levels. So many pwME will now be losing/won't be getting any specialist medical care or practical support with things like disability aids, proper doctor's notes for sickness benefits applications etc. So much collective knowledge and experience will be lost now :cry:

It will for sure have many negative knock-on effects on everything from education and research to policy and guidelines development, the direction of/the setting up of new ME centers in the future (if any), how ME is portrayed in the media etc :cry:

Stora Sköndal are closing down only the ME center, not the foundation.

They are saying this was a decision based on money.

Some of you maybe remember that in April 2018 Bragée ME-Center threatened to close down, as part of their negotations for a better contract. Stockholm County Council did eventually change the contract details, which then also affected Stora Sköndal's ME center. While the new contract suited Bragée's business model better, it seems it had a very negative impact on Stora Sköndal. I don't know if this is part of the reason why Stora Sköndal is now having to close down, but I can't help wondering...

:cry::cry::cry:
 
Thank you @mango for providing more details.

This sounds like a tragedy for Swedish ME patients. I've heard nothing but good things about Stora Sköndal and have several times pointed towards the foundation when speaking to Norwegian health care workers as a good example of how things can be done.

Never controversial, always knowledge based and thorough, good dialogue with the patients and always on their side, was my impression of them.

I'm so sorry about this..

:(

The Facebook post from the Swedish ME Association RME also said there will be an announcement on Tuesday from Stora Sköndal on their website. Maybe we'll learn more then.
 
chrisb said:
There must be no plans to diagnose post covid patients as having ME. Seems a strange decision when there might be an increase in demand.
Click to expand...
The Swedish covid patient organisation is intentionally trying very hard to distance themselves from ME and pwME, and their lobbying is along the same lines... They are explicitly calling for exceptions just for themselves as a group, regarding medical care, sickness benefits etc.

They don't even mention ME, ME/CFS or CFS on their website, nor in their reports or press releases.
 
chrisb said:
I rather suspected that. Is there any evidence for the proposition that funding required for this centre has been diverted, or may be needed elsewhere?
Click to expand...
Not that I know of. The contract was problematic from the very beginning, and even worse so after the changes in 2018. It's simply not realistic, the amount of money the clinic is offered by the county council doesn't anywhere near reflect the reality of what it costs to care for ME patients. The budget has been way too tight all along, this is not a new problem.

I hope we will get more info next week.

I'm only guessing, but seeing that they aren't compensated fairly for (among other things) phone and video call appointments or home visits, and seeing that due to the pandemic even more patients than usual are unable to visit the clinic in person, I think that probably must have affected their finances.
 
They get 3000 SEK for a patient's first visit with a doctor at the clinic, and 1 600 SEK for the following visits (much less for physios, psychologists, nurses, occupational therapists, dieticians etc).

Compared to 150 SEK for a phone appointment with a doctor, and 650 SEK for a digital appointment.

3 500 SEK for a home visit.
 
Just for information. I represent the Bragée ME-center. We are as sorrow and supportive for both patients staff at Stora Sköndal and as disappointed as all in this thread, and worried for patients at this dear fellow-clinic, and all in their very long waiting list for care. There are some unecessary comments here on economy. Our situation is very similar to Stora Sköndal economically, if not even worse. The thoughts above are unfair. But we have hope and trust that we will be able to solve the situation to the best for ME-community. We have large costs for research, but will do all to continue that too. As RME has pointed out, it is a very fragile patient group, often with understandable difficulties to visit prescheduled consultations, with high and right demands for resources and time, and with a high burdon for our ten doctors to meet all demands from public insurance on sick-leave and compensation. Just now we are planning a sort of turn-around with new digital possibilities for patients, more home-visits and even more staff for support. We are now 40 professionals and get 150 referrals per month, in my mind it is an impossible and unbearable thougt to throw in the towel. So let us concentrate on support, not speculations.
 
Bjorn Bragee said:
Just for information. I represent the Bragée ME-center. We are as sorrow and supportive for both patients staff at Stora Sköndal and as disappointed as all in this thread, and worried for patients at this dear fellow-clinic, and all in their very long waiting list for care. There are some unecessary comments here on economy. Our situation is very similar to Stora Sköndal economically, if not even worse. The thoughts above are unfair. But we have hope and trust that we will be able to solve the situation to the best for ME-community. We have large costs for research, but will do all to continue that too. As RME has pointed out, it is a very fragile patient group, often with understandable difficulties to visit prescheduled consultations, with high and right demands for resources and time, and with a high burdon for our ten doctors to meet all demands from public insurance on sick-leave and compensation. Just now we are planning a sort of turn-around with new digital possibilities for patients, more home-visits and even more staff for support. We are now 40 professionals and get 150 referrals per month, in my mind it is an impossible and unbearable thougt to throw in the towel. So let us concentrate on support, not speculations.
Click to expand...
Are your comments about "unnecessary" and "unfair" referring to something I wrote? If so, what and why? All of it? Please expand.

Is it not true that you/Bragée ME-center gave official notice of termination of your contract with Stockholm County Council in the beginning of March 2018, during the contract negotiation process?

Is it not true that the 2018 contract is better for Bragée ME-center, compared to the previous contract?

Is it not true that the new terms and conditions of the 2018 contract made an already difficult situation even more difficult for Stora Sköndal ME/CFS-mottagning?

Are you suggesting that the changed terms and conditions of the 2018 contract definitely had no impact at all on Stora Sköndal's decision to close their ME/CFS clinic?

Please do let me know if I got any of the facts or numbers wrong. If so, I do apologise for my mistakes, and I'd be more than happy to correct them.

(Edited to correct spelling mistakes.)
 
Last edited:
This is really, really bad.

I was a patient at Stora Sköndal and I've been following the ME specialist healthcare in Stockholm for a number of years, and I think this bad trajectory started when the contract with the city council (Region Stockholm) changed regarding time limited interventions.

When I became a patient at Stora Sköndal, there was no time limit for how long patients could receive healthcare from them. To me, this was one of the core features that made it possible to structure healthcare in a way that was suitable for people with ME. It wasn't perfect but it was better than all other healthcare I've received. I've been at a pain clinic before and I've been digging into healthcare for pain management in Sweden and the structure where patients are supposed to receive time limited interventions doesn't fit ppl with ME, for a number of reasons.

When the contract with Region Stocholm changed from long term healthcare to time limited healthcare, the conditions and possibilities changed, for the worse. People with ME who like me are homebound and almost bedbound and extremely sensitive to a lot of healthcare interventions need to be followed for at least a couple of years, because otherwise interventions will be rushed and staff won't get a chance to learn about consequences of different procedures.

My experience was that my last year at Sköndal, the perspective had changed a lot and I experienced a much more pain-focused approach (where the new doc tried to push me into more activity). It became a lot more like the healthcare at the pain clinic (at Danderyd's hospital) and not the specific ME-healthcare that I had received earlier.

My wish was that the staff would push for a different financial model where there could be proper funding for the things that are specific to pwME, like home visits, preparation interactions (like writing with your doctor before seeing them, to make the effort of receiving a home visit less exhausting and safer), but with the change of the contract to time limited care, it evolved in a different direction.

My experiences from a lot of conversations with some of the staff at Sköndal, my husband's conversations with them and from reading through contracts and interactions between Region Stockholm and the two ME clinics is that a lot of the ppl involved didn't understand the specific circumstances and needs of pwME. The more it became organized like a pain clinic, the worse the healthcare was and the more expensive it got because of things that where done in bad ways and had to be redone, important things that were forgotten, misunderstandings in interactions due to a poor structure of home visits etc.

I don't know exactly if my observations can tell us anything about how we ended up like this, but I think all ppl interested in healthcare for ppl with ME deserve to know this.

Organization of healthcare for people with ME is key. Without consideration for the actual needs for ppl w ME, healthcare will become more expensive and harmful.
 
Last edited:
Stora Sköndal has published a long text on their website today. (Personally, I'm surprised by how they chose to frame their reasons for closing...)

https://www.storaskondal.se/vara-verksamheter/neurologisk_rehabilitering/mecfs-mottagning/
Google Translate said:
Current information December 2020

The Stora Sköndal Foundation has terminated its agreement regarding ME/CFS specialist doctor's center with the Stockholm Region, which means a notice period of six months. We will therefore not be able to receive new referrals from 1 December 2020 and the center will close on 31 May 2021.

The reason is that we have had difficulty recruiting specialist doctors, which means that we cannot receive enough patients so that the business does not make a loss.
We understand that in the near future this will affect what opportunities there are for patients with ME to receive specialized care. We deeply regret this. [...]
Click to expand...
How is the ongoing research that you are involved in and conducting affected?

We do not conduct our own research but assist with our employees and expertise to, among others, Karolinska Institutet. As knowledge about the disease is still low in healthcare in Sweden, we hope that the principals will continue to invest in research in ME, all in order to provide the sufferers with good care.
Click to expand...
 
RME press release:

Katastrof för ME-sjuka när specialistvård läggs ned
https://www.mynewsdesk.com/se/rme/p...sjuka-naer-specialistvaard-laeggs-ned-3055160
Google Translate said:
Disaster for ME patients when specialist care is discontinued

- Serious consequences when one of the country's two specialist clinics for approximately 40,000 ME sufferers ceases.

The Stora Sköndal Foundation is forced to close its ME/CFS clinic. The consequence is that tens of thousands of people living with the severely disabling multisystem disease ME risk being left without care. At the same time, doctors and researchers warn that the corona pandemic could cause a new wave of ME patients.

The country's only two county council-affiliated specialist clinics for the care of people affected by ME (Myalgic Encephalomyelitis) are located in the Stockholm Region. One of these centers is now forced to close due to, among other things, an inadequate contract.

Approximately 40,000 people in Sweden today live with the serious and chronic disease, which in 75 percent of cases begins with a viral infection. There are many indications that the patient group will increase sharply as more and more people become long-term ill after covid-19 and show symptoms that are consistent with ME. Professor Jonas Bergquist, who is researching ME and covid-19 at the Biomedical Center, Uppsala University, says:

"We know that the vast majority of ME sufferers make their debut after a virus-related infection and we fear that the number of patients with long-term post-viral fatigue and ME will increase very sharply in the suites after the covid-19 pandemic."

The announcement that the ME/CFS clinic will be closed has been met with great concern among sufferers and relatives. Already today, many have had to be on a waitlist for several years to get there. The clinic has also for a long time accumulated valuable experience and knowledge about the disease, arranged training for other regions, and participated in important research collaborations both nationally and internationally. Knowledge that is now at risk of being lost. Kerstin Heiling, chairman of RME (The Swedish Association for ME Patients) believes that this is a disaster:

“On average, it currently takes just over 9 years for an ME patient to receive a diagnosis and care. The closure of the clinic means great personal suffering for the sufferers and their relatives, as well as a great financial loss, as more patients will be shunted around without receiving adequate care. At the same time, the risk increases that seriously ill people become even sicker because they do not receive help in time. It is a development in the completely wrong direction."

Facts about ME

ME is classified by the World Health Organization, WHO, as a neurological disease. In addition to the nervous system, the immune system and energy production are affected. ME is a serious, physical, chronic, complex multisystem disease that is severely disabling. Up to 25 percent of patients are confined to their homes or bedridden. To be diagnosed, you must have a 50% loss of activity and often the patient has their whole life stolen. It has also been shown that it is the diagnosis that has the lowest quality of life compared to other diseases.

According to the so-called Canada criteria, the most typical symptoms are severe energy deficiency and exertion-induced deterioration. Influenza symptoms such as fever and sore throat, muscle and joint pain, cognitive problems, brain fatigue and sensitivity to sensory input are also common. All symptoms worsen after any form of physical or mental activity.

There are currently two ME specialist clinics; Bragée ME-center and the ME/CFS center at Stora Sköndal. In addition to this, there are also two pain clinics that currently accept ME patients. Region Stockholm has a fact page about ME/CFS in its knowledge portal www.viss.nu, type ME/CFS in the search box.

Source: RME, the Swedish Association for ME Patients, www.rme.nu

Contact details [...]
Click to expand...
 
Last edited:
RME has written a letter to Stockholm Regional Council (which apparently is the official name in English for Region Stockholm, which I've called "the county council" in my previous posts, sorry about that).
Google Translate said:
[...] An important reason why both the existing clinics are losing money, as far as we know, is that the contracts with the Stockholm Region are not adapted to the care of ME patients.

* The patient visit requires a longer time. As the diagnosis cannot be determined by standard clinical testing, it must be based on a detailed medical history and careful clinical examination. Many patients need to take a break during the visit to be able to participate.

* Especially for patients who have long journeys, but also for the most seriously ill, the physical visits need to be replaced with digital contacts or telephone calls. The clinics do not receive cost coverage for this.

* Late cancellations are common because patients' conditions can deteriorate from one day to another or even from hour to hour. Other patients cannot be called in at short notice. This means significant losses for the clinics.

* ME/CFS is a multi-system disease and referrals often need to be sent to qualified examinations, for example at a neurological or gastroenterological clinic with associated costs.

* A closure of the ME clinic at Stora Sköndal means a considerable waste of resources as a well-established team with unique expertise is split. The team has also participated in training initiatives, primarily in the Stockholm Region, but also in other parts of the country.

International research shows that a significant number of people who become long-term ill with covid-19 will develop ME/CFS. In this situation, closing down a clinic that could contribute to these people receiving adequate investigation and treatment is very unfortunate.

RME has for a long time been working to establish specialized ME/CFS clinics in all regions. The fact that this has not taken place naturally contributes to the closure of the reception at Stora Sköndal having such serious negative consequences.

That is why we urge Stockholm Region:

* to immediately update the current agreement for the Region's care for ME / CFS, so that the activities for patients with MEM / CFS can be conducted with good financial conditions. [...]
Click to expand...

 
The very same day the Stora Sköndal Foundation announced that they are closing their ME/CFS center, they announced that they are acquiring a new healthcare clinic ("vårdcentral"). Some ME patients are, understandably, upset.



ETA: "Interesting" that Stora Sköndal Foundation published a press release about acquiring a new healthcare clinic, but no press release about closing their ME/CFS center...
 
Last edited:
In related news, Bragée ME-Center is hiring...

https://candidate.hr-manager.net/Ap...ProjectId=143590&DepartmentId=18960&MediaId=5
Google Translate said:
Specialist doctors with an interest in ME/CFS are sought at Bragée clinics

Bragée clinic's ME center is looking for a specialist doctor with knowledge of and interest in developing ME care for a large group of patients. We see ME as a somatic and neurological syndrome in accordance with the latest research findings. We work on behalf of the Stockholm Region in the relatively new care choice for the group.

As a doctor at the ME center, you are responsible for investigation, diagnostics and in some cases treatment as well as collaboration with primary care for patients with ME/CFS.

Merit is specialist competence in rheumatology, general medicine, internal medicine, neurology, pain relief or orthopedics. You also have knowledge of and a pronounced interest in developing ME/CFS care. It is desirable that you have experience of working in teams.

In addition to a pleasant work environment, we can offer a varied and independent work where you are part of a team with a nurse and physiotherapist, occupational therapist, sociologist. We attach great importance to personal suitability.

About us:

Bragée clinics consist of Bragée Rehab and Bragée ME-center, both of which work on behalf of the Stockholm Region. Bragée Kliniker has around 100 employees, of which about twenty are specialist doctors and has been around since 2014. Our premises are located in the Garrison on Karlavägen 100.

If you want to know more about us, read at https://www.bragee.se/

For questions about the position, email Lennart Ljungh, Operations Manager ME-center lennart.ljungh@bragee.se or Kent Nilsson, medically responsible doctor ME-center kent.nilsson@bragee.se

We interview regularly during the application period and the position may therefore be filled before the last application date.

Welcome with your application!

Bragée Clinics consists of Bragée Rehab and Bragée ME center and works on behalf of Region Stockholm's care choice "Specialized rehabilitation for long-term pain and fatigue syndrome". Bragée Kliniker has around 100 employees and has been around since 2014. Our premises are located in the Garrison on Karlavägen 100.

Working with us:
https://www.bragee.se/jobba-hos-oss

Application deadline:
2021-02-28

Location:
Stockholm

Type of service:
Doctor
Click to expand...
 
mango said:
ETA: "Interesting" that Stora Sköndal Foundation published a press release about acquiring a new healthcare clinic, but no press release about closing their ME/CFS center...
Click to expand...

Is there any indication of the type of conditions the clinic will cater for, or why they should be more financially viable than ME patients?
 
You must log in or register to reply here.
Back
Top Bottom