Families tend to be implicated in providing home care to assist with patients’ vital functions
Improving care for patients with extreme neurodegenerative diseases
The Luxembourg ministers of health, family and social security announced on 24 July plans to increase cooperation to better support patients requiring intensive rehabilitation, namely those suffering from extreme neurodegenerative diseases.
The cases in which adults or children specifically deal with permanent neuromuscular or metabolic diseases applicable are rare--impacting around 6 out of 100,000 individuals--but they require uninterrupted care, follow-up, not to mention the fact that families tend to be implicated to provide assistance at home to further assist with patients’ vital functions.
With this in mind, Lydia Mutsch, Corinne Cahen and Romain Schneider agreed to set up an “exceptional measure”, according to a government press release, with the ministers stating that the approach would be one “of solidarity in the face of a real urgency to act,” the aim being “to strengthen the support of the Luxembourg social protection system towards those who need it”.
The platform, comprised of representatives from a range of services and departments concerned with these patients, will review each case to assist patients and their families with assistance in applying for benefits for which they may be eligible.
In the past, this was not always so straightforward, given the fact that patients with such rare diseases often deal with several models of healthcare, from regular health insurance and longer-term care to other disability-specific benefits.
If, after review, these patients’ needs are still not met, they may apply for financial aid based on certain eligibility requirements.
Specific details on the programme were not been announced.