ALS is a collection of unusual neurological diseases that paralyze the body and ultimately affect the patient's ability to breathe.
Getting adequate respiratory help at home can therefore, according to Caroline Ingre, both prolong life and increase the quality of life for the victim.
Patients remain in hospital
But the regulations regarding who is tasked with managing patients' respiratory care are perceived as unclear.
Caroline Ingre believes that patients risk falling between the cracks between all the authorities involved and the actors involved in respiratory assistance, as it is unclear who is responsible for the breathing machines once the patient returns home.
It will be especially difficult for those patients who have reached the age of 65 and thus can no longer seek personal assistance, she says.
- I do not think one understands how great a consequence this process has for patients and relatives.
It is a small group of patients, and they die quickly.
There are few who can point out the problems.
* Hear more in the clip above.
The issue must be investigated
SVT has sought Minister of Social Affairs Lena Hallengren who declines an interview.
However, the Ministry of Social Affairs replies in an email that the government has stated that there are demarcation problems and ambiguities regarding respiratory assistance in the home.
The issue is currently being investigated and will be reported in May this year.
The region: It works in Stockholm County
The task of the health and medical care administration is to pay financial compensation in cases where ALS patients are granted assistance for respiratory assistance at home.
They agree that the regulations are unclear, but at the same time believe that the system in Stockholm County works.
* Hear more about it in the clip:
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Anna Ingmason, head of the department for local health care at the Health and Medical Care Administration, understands that the legislation is seen as messy.
Photo: SVT