Sweden: Stora Skondal to close

[mango]

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?

Yes, it's a general practice/primary care clinic that also offers clinical home healthcare, has pediatric nurses etc. The contract with Stockholm Regional Council is different than the ME/CFS one, so the financial viability will also be different...

Sköndal's GP clinic is a personal, small health center, with premises in Sköndal center, which performs primary care, BVC and home health care on behalf of Stockholm County Council. At the reception there are district doctors, ST and AT doctors, district nurses, nurses, assistant nurses and curators. We also provide home care for patients with chronic diseases and disabilities.

http://www.skondal.com/mottagningar/

Here's a news article, saying the owners are selling the clinic after 25 years:
https://www.mitti.se/nyheter/han-sa...dal-efter-25-ar/reptla!Tl1JXI33mWvSfZ5ryvzRg/

Maybe I should change my reply to your earlier question... Even though the funding from Stockholm Regional Council hasn't changed (as far as we know), it does indeed seem as if Stora Sköndal's money was "needed" elsewhere...

ETA: Please, always feel free to correct me if I'm using the wrong terms and names for things in English. I don't know how to translate things properly since I can't find them in the dictionaries, and the fact that the healthcare systems in Sweden are different to those in the UK and the US etc doesn't make it easier. In Sweden each region has their own healthcare system, more or less.

 

[mango]

Again, I really believe that the points Clementine made in their post are at the core of the issue.

When the contract with Region Stocholm changed from long term healthcare to time limited healthcare, the conditions and possibilities changed, for the worse.

According to the new/2018 contract, the ME clinics are expected to examine, investigate and assess (if those are the correct words in English? ”utreda” in Swedish) in order to diagnose, and then send the patients on to somewhere else or back to their GP. The contract specifically says "a limited intervention focussed on symptom management and, if needed, rehab interventions".

Like Clementine writes, that’s not how Stora Sköndal ME/CFS clinic used to work. As a part of a neurological rehab clinic, they tried to create continuity of care for chronically ill people. I know people who have been registered at Stora Sköndal ME/CFS clinic since 2015 (the year they opened), who have been getting various kinds of medical care and support as and when needed over time, and still are.

I would say that following ME patients over time is a crucial way to learn about the disease, our needs, the risks and challenges, how to best help us, etc. A few “snapshots” will never give you a genuine understanding of ME or how it affects our lives, how it all keeps changing over time, our fluctuating medical and practical support needs, the long term consequences of iatrogenic harm, the (structural) barriers that limit our access to care and support, the effects of widespread medical discrimination and stigma, etc.

There is still plenty of room for improvement at Stora Sköndal ME/CFS clinic, they were still learning.

In comparison, how many patients, if any, have been getting that kind of long term healthcare at Bragée ME-center since they opened in 2017? The impression I keep getting from patients at Bragée ME-center, who are sharing their experiences on social media etc, is that they get quite a few tests and medical exams within a very short period of time, after which they get one or several diagnoses or don't, and are then quickly sent back to their GP. All of which is completely in line with the new contract.

Two very different approaches.

 

[Clementine]

Two very different approaches.

This is key here, and I want to clarify what my experiences were regarding this.

Changing the contract to time limited doesn't only change the time you are a patient at an ME-clinic. It also changes what happens and how it happens during your time there.

For an ME-patient it means that things can be rushed, and it means that things that take time because you need a lot of recovery time in between sessions won't happen. Getting your home accommodated, filing for some kind of disability money or permanent income compensation, trying out different kind of aids etc, all these things can take years for a severly ill person with ME.

When a clinic is time limited it means that this kind of care won't happen, especially not for the severely ill ME-patients that need to do this in a very adjusted pace with lots of recovery time.

Time limited healthcare for ppl with ME means that the more severely ill become less prioritized and get worse healthcare.

(Edit: Typos have been corrected.)

 

[Clementine]

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.

Regarding this, that it's a big problem when healthcare for ppl with ME is structured like healthcare for pain management/rehab is in Sweden, it can be really problematic.

I made a post on instagram today about pain and my experiences form the pain rehab/management clinic at Danderyd and so far, I've got two comments from ppl sharing similar experiences (translated to English with google).




"damn, this is also my experience of pain rehab, and another person in my group. in the grove where we went, it felt very focused on long-term pain after an accident or events where pain suddenly arose later in life, but we both had experience of being ill since adolescence. Do you want to tell us where you went to rehab? very bad that this is not in the records."

"Recognizes .. and has similar experiences from pain rehab. Had to cancel because I got very much worse and could not even get there. They also did not write it in the journal, but wrote that I did not "want" and also recommended withdrawn sickness benefit"

 

[Trish]

How does the change from long term care to time limited care work for people with MS and Parkinsons' disease and other long term conditions which are incurable and tend to deteriorate over time? Are they in a different system?

 

[Anna H]

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.

I'm sorry to hear your clinic is also struggling economically. As the reasons behind Stora Sköndal closing were related to economy, I don't see how it's unnecessary to comment on that when trying to understand why this has happened?

Being a current patient at Sköndal I'm deeply affected by this decision and have no idea what the future holds in terms of health care for me personally. It's very stressful.

I ponder what could have been done differently to avoid this from happening, what we can learn from it to prevent future ME clinics from meeting the same fate.

I have a need to understand the turn of events that led to this and I'm pretty sure I'm not alone in that.

An important part of coping successfully with adverse events is to experience a Sense of Coherence, SOC, (termed by Antonovsky) - some sense of meaning in what's happening, some predictability and some ability to influence or control the situation.

This is something I suspect is sorely lacking in the lives of many ME patients, both in regards to receiving healthcare and applying for disability benefits, but also the disease itself.

So let us concentrate on support, not speculations.

So I would argue that discussing the "why" of Sköndal's closing is also a form of support and necessary to increase the Sense of Coherence for ME patients.

To my knowledge what @mango has shared is factually correct, but I too would like to know if there are any erroneous statements?

Edit :to clarify

 

[Clementine]

How does the change from long term care to time limited care work for people with MS and Parkinsons' disease and other long term conditions which are incurable and tend to deteriorate over time? Are they in a different system?

It depends on where you live, but there seems to be a trend in general in Sweden that more and more should be handled by a primary physician after some time, assesment and interventions from specialized healthcare.

However, it differs a lot in how easy it is to get back in touch with specialized healthcare when needed, and for how long you get specialized healthcare. For the pain clinic I was a patient at, they would get a fine if they kept patients more than a couple of months, while a person I knew with MS could go back and forth to specialized healthcare and be in active interventions there for several years at a time.

There's also a big difference in how much primary physicians know about different diseases. They usually know way more about MS than about ME, meaning that the need for long term specialized healthcare is bigger for pwME.