Sweden: Stora Skondal to close

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?

 

It's absolutely devastating news, a massive loss, very very sad 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

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

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...

 

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.

 

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.

 

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.

 

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?

 

It would be interesting to hear, in due course, how the medical staff are redeployed and how there apparent expertise is to be used.

 

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.

 

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.)

 

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.

 

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/

 

...and this in a year where there's finally some awareness and interest on post viral illness among doctors. Who knows what could have happened had they been able to hold on just a few months longer.

 

RME press release:

Katastrof för ME-sjuka när specialistvård läggs ned
https://www.mynewsdesk.com/se/rme/p...sjuka-naer-specialistvaard-laeggs-ned-3055160

 

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).

 

There's an article today in Dagens Medicin (news website for healthcare professionals and decision makers), but it's paywalled.

Stora Sköndal lägger ner ME/CFS-mottagning
https://www.dagensmedicin.se/alla-nyheter/neurologi/stora-skondal-lagger-ner-me-cfs-mottagning/

https://twitter.com/user/status/1333768835963490304

 

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...

 

In related news, Bragée ME-Center is hiring...

https://candidate.hr-manager.net/Ap...ProjectId=143590&DepartmentId=18960&MediaId=5

 

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?