Health Ministry extends emotional support for patients with intestinal failure for four years

The Community of Madrid will maintain the emotional support and accompaniment program for patients with intestinal failure, multivisceral transplant, and parenteral nutrition, as well as for their families, until 2030. The Regional Ministry of Health, the Madrid Health Service, and the NUPA association signed an amendment for the modification and extension of the supporting agreement on September 2, 2026, published in the BOCM no. 224, of September 19, 2026 (reference 03/14.216/26).

The original agreement was signed on September 8, 2022, and had a validity of four years, ending on September 7, 2026. The amendment extends the collaboration from September 8, 2026, to September 7, 2030, both dates included, thus exhausting the maximum of four additional years authorized by Law 40/2015, of October 1.

The amendment is signed by the Regional Minister of Health, Fátima Matute Teresa; the Vice-Minister of Health and Director General of the Madrid Health Service, Laura Gutiérrez Barreno, and the president of NUPA, Andrea Campos Obra. The processing corresponds to the General Directorate of Humanization, Care, and Patient Safety, in accordance with Decree 245/2023, of October 4.

Four more years of emotional accompaniment

The program is structured around free and voluntary activities for participating patients and families, which may be carried out in person or remotely depending on the health circumstances:

• Emotional support and accompaniment to face the process of illness and hospitalization.
• Mutual aid activities with the families of affected patients.
• Caregiver support activities.
• Recreational and leisure activities with hospitalized patients (leisure and respite).
• Free loan of games and books, which in the case of pediatric patients facilitates the early stimulation of their development.
• Information regarding NUPA’s free accommodation for families from other autonomous communities who come for treatment at the centers included in the agreement.

When minors participate, the consent of their parents or legal guardians will be required. The collaboration is not exclusive, therefore the Community of Madrid and the Madrid Health Service may sign agreements with other entities for the same purpose.

From minors to adult patients

The amendment modifies the title and the first, second, and third clauses of the agreement to expand its scope to adult patients with these pathologies. The text justifies the change on the grounds that many of the minors treated need to continue receiving care during the transition to adulthood, and that NUPA is in a position to assume this expansion.

The agreement shall now be called the “Agreement between the Community of Madrid, through the Regional Ministry of Health, the Madrid Health Service and the Spanish Association of People Affected by Intestinal Failure and Transplantation-NUPA, for the development of the emotional support and accompaniment program for patients affected by these pathologies and their families, in the health centers of the Madrid Health Service”. The change of the association’s name was agreed upon at its General Assembly on November 28, 2022.

“12 de Octubre” enters the scope of the agreement

Annex I, which lists the Madrid Health Service centers included in the scope of application, consists of two hospitals:

• “La Paz” University Hospital.
• “12 de Octubre” University Hospital.

The incorporation of the “12 de Octubre” University Hospital responds to the desire to extend the accompaniment program to patients with this pathology admitted to that center, taking advantage of the fact that the first clause of the agreement allows for the expansion of centers by agreement of the parties.

Data protection and confidentiality

The addendum updates Annexes II and III to adapt the agreement to the current data protection framework. The Madrid Health Service acts as the data controller and NUPA as the processor, in accordance with Regulation (EU) 2016/679 and Organic Law 3/2018, of December 5.

Among the established obligations, the following stand out:

• Notify the controller of any data security breach within a maximum period of 24 business hours.
• Forward requests for the exercise of rights within a maximum of two business days from their receipt.
• Communicate any sub-processing of the data one month in advance.
• Comply with the information security policy of the Regional Ministry of Health established in Order 491/2013, of June 27.

NUPA is a non-profit entity declared of public utility, registered in the National Registry of Associations, Group 1, Section 1, under number 586889, and with NIF G-84689850.

The extension guarantees the continuity of a healthcare humanization program that accompanies patients and families during prolonged illness processes and complex hospitalizations, and which now also reaches adults and a second major public hospital in Madrid.

Source: BOCM, no. 224, September 19, 2026, I. Community of Madrid, D) Announcements, Regional Ministry of Health, pp. 67-77 (official reference: BOCM-20260919-6 / 03/14.216/26).