‘Help Holger now’ video about a Swedish man with very severe ME

In Sweden it's the municipalities (kommunerna) that are responsible for care homes, home healthcare, personal in-home care services like support and personal assistance etc. You can apply for the services you need/want, they initiate an investigation, and based on the results they will then approve or deny your application. There are big differences between municipalities, their decisions can be very arbitrary, and it's difficult to make a successful appeal.

Yes, the municipality can forbid someone to stay home if they believe it to be a threat to his health and well-being. However, I don't think that's what happening to Holger right now? (But yes, indirectly that's the consequence of the municipality's decisions.)

In Holger's case, his brother commented on Facebook, saying that their municipality is denying Holger the support he is entitled to according to the laws SoL and LSS. This would include personal in-home care, personal assistance, relief service and more. Holger's family isn't qualified to handle the intravenous feeding, so that kind of help is an absolute must if Holger is to stay at home.

Their municipality is trying to send Holger to a care home in a different municipality, a 2 hour drive away. Holger's family has appealed the decision (because they believe moving him there would kill him, and they have doctors' notes saying such a move would be life-threatening), and the administrative court of appeal has ordered an injunction against the Social Welfare Board's decision. This means that the municipality is not allowed to send Holger to a care home in another municipality for now, at least not until the case has been decided on in the court of appeal.

SoL = the Swedish Social Services Act.

LSS = the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments.

ETA: More details about the problems at the care home are available in this letter from Holger's mother, published a month ago in a local newspaper:

Insändare om ME-sjuke Holger
https://skillingaryd.nu/nyheter/insandare-om-sjuke-holger/

Google Translate, English

(I noticed that they have deleted some of the comments below the letter. They were an absolute nightmare to read, really vile personal attacks on Holger's family some written by people apparently working for the municipality and at the care home.)

 

Paywalled article in a Christian paper yesterday.

They share some details from the certificate for compulsory psychiatric care where the doctors claim that some notes on Holger's wall (Bible verses, quotes like "Jesus is risen", the names of some Christian prophets as well as Holger's name, put there by friends and family as messages of hope for Holger) strengthens their suspicion that Holger is delusional.

It says that the care home have made some changes in order to "improve the work environment" for the staff, such as hiring a guard. (The so called "work environment problem" is Holger's family...)

It also says that in the documents where the municipality describe their reasons for wanting to move Holger to a care home a 2 hour drive away in a different municipality, it's because they don't want to have to deal with Holger's family.

Kommunen vill flytta svårt sjuke Holger timmar från familjen
https://www.dagen.se/nyheter/2021/0...ytta-svart-sjuke-holger-timmar-fran-familjen/

ETA: Freedom of religion has been enshrined in Swedish law since the 1950s.

 

The full text has been shared in the comments on Help Holger Now's Facebook page here.

 

Dagen has published two more articles on ME recently:

Vad är ME/CFS?
https://www.dagen.se/nyheter/2021/08/03/vad-ar-mecfs/

Explains what ME is, with comments by dr Björn Bragée. Paywalled (full text available in the comments on Help Holger Now's Facebook page).

Anhörigas kamp är ofta hopplös
https://www.dagen.se/ledare/2021/08/05/anhorigas-kamp-ar-ofta-hopplos/

Opinion piece (not paywalled) about some of the problems in general with the Swedish personal assistance system (LSS), and how difficult it can be for disabled people, their family and carers to get the practical and financial support they are legally entitled to.

 

I have published a blog today related to this article and this is a link to the Google translate version of it. The title is totally wrong in translation but it should be (sort of): ”A patients delusion or a misinterpretation by healthcare?”

https://mitteremitage-wordpress-com...x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=ajax,nv,elem

 

The irony.

As Holger and his family have Christian beliefs and faith it amounts to evidence that Holger is delusional.

Yet these doctors & the health authority have unshakeable faith in their own belief born of a hypothesis that is not just unproven but has been proved wrong by the PACE trial.

You couldn't make it up.

 

An open letter published by Millions Missing Gothenburg:

 

An update on Holger today on Facebook. He now lives in his own flat under a care facility and is a tiny bit improved.
Autotranslation from Swedish:

We understand that many people wonder how Holger is doing. We apologize for not updating you. A lot has happened, but this is the situation right now:
Holger lives in his own apartment in the neighboring municipality in connection with an LSS accommodation.

He has had a hard time getting the nutrition he needs, but this seems to be working better now.

There has been some improvement in his ME. He is not as sensitive to sound and light anymore. For example, he no longer needs sunglasses. He has also started to use his voice again and can handle short conversations.

His doctor takes his ME seriously and is looking for ways to help him. We are hopeful that he will soon be able to try some treatment option.

Holger sees the future positively and continues to fight. He has not given up on the dream of recovery.