The Luxembourg Ministers of Health, Family and Social Security have decided to introduce a new measure to address the concerns of patients who depend on intensive support and exceptional extra-hospital medical care.

The people included in this new measure are adults or children suffering from extremely disabling neurodegenerative diseases, particularly severe permanent neuromuscular diseases or metabolic diseases, which in most cases require continuous and uninterrupted follow-up and the use of heavy medical equipment essential to the maintenance of vital functions. Care includes help with food, communication and respiratory assistance.

Although such cases are rare, affecting about 5 to 6 out of 100,000 people, the impact of these exceptional situations is huge, not only for patients but also for their friends and families. Indeed, the presence and involvement of the family is essential to ensure the maintenance of those affected at home.

Ministers Lydia Mutsch, Corinne Cahen and Romain Schneider recalled that the emancipation of the patient and their right to dignity and self-determination are other considerations behind this concerted approach. Additionally, home-based care is a right under the auspices of the UN Convention on the Rights of Persons with Disabilities.

Due to their atypical and complex needs, the people concerned are very often straddled by several models of care currently offered by the Luxembourg system: health insurance, long-term care insurance and / or benefits and specific services for people with disabilities. Consequently, a significant financial contribution must often be made by the families in order to be able to provide adequate care to the individual, while respecting their self-determination.

Consequently, the Luxembourg ministers decided to set up a new exceptional measure for intensive extra-hospital support of some people as part of an “approach of solidarity”. Indeed, according to the ministers: “The aim is to strengthen the support of the Luxembourg social protection system towards those who need it.”

An inter-ministerial consultation platform, composed of representatives of the various institutions, administrations and departments concerned, will carry out a case-by-case analysis. In order to ensure the recourse of the persons concerned to all the eligible aid and services, the platform will help people and their families to move towards the institutions, administrations and services offering assistance and benefits for which they have not yet applied.

Where the existing supply is insufficient to meet the needs identified, the persons concerned may apply for specific financial aid, adapted to their specific case and subject to a ceiling, provided that certain eligibility criteria are met.

Photo by MSAN. L-R: Romain Schneider, Minister of Social Security; Lydia Mutsch, Minister of Health; Corinne Cahen, Minister of Family and Integration