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Problems of Persons with Prader-Willi Syndrome in Participating in Medically Supervised Weight Loss Programmes

The Ombudsman was informed by the complainants and representatives of persons with Prader-Willi syndrome (PWS) about the problems of these persons with participating in programs in which they could lose weight under medical supervision after the age of 19. People with PWS lost weight under medical supervision in the institution formerly known as the Centre for the Treatment of Children's Diseases Šentvid pri Stični, today named the Children's Hospital Šentvid pri Stični (Hospital). However, the Hospital started rejecting older children (who have already reached the age of 18) with PWS, despite the fact that the hospital is the only one in Slovenia that implements a programme that allows persons with PWS to lose weight under medical supervision even after the age of 19. The Ombudsman invited the Ministry of Health (MZ) and the Ministry of Labour, Family, Social Affairs and Equal Opportunities (MDDSZ) to resolve these issues, and so they were. The Ombudsman expects to be informed of the adopted solutions. He will monitor the issue and, if necessary, become more intensively involved in finding solutions.

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The Ombudsman of the Republic of Slovenia was informed by the complainants and representatives of persons with Prader-Willi syndrome (PWS) about the problems of these persons in participating in programs in which they could lose weight under medical supervision after the age of 19. The complainants stated that persons with PWS are often mentally or physically disabled and are insured by their parents, even after reaching the age of 18 or 26. Most of these persons are not able to live independently, and most of their parents have their parental rights extended after the child turns 18.

Persons with PWS lost weight under medical supervision at the Children's Hospital Šentvid pri Stični (Hospital). The problems arose because the Hospital allegedly rejected older children (who had already reached the age of 18) with PWS, despite the fact that the Hospital is the only one in Slovenia that implements a program that allows persons with PWS to lose weight under medical supervision even after the age of 19. The Hospital’s arguments were that it does not have doctors who could treat older children and that it does not have enough specialists, such as psychiatrists. The fact that the Hospital no longer wants to accept older children is supposedly also felt in the attitude towards them. As a result, according to the complainants’ statements, these persons reject to be treated in the Hospital, since they do not feel well there. The complainants turned to the Ombudsman because they did not know who to turn to and where their older 'children' could be treated.

The Ombudsman contacted the Ministry of Labour, Family, Social Affairs and Equal Opportunities (MDDSZ) and the Ministry of Health (MZ). MDDSZ announced that it informed the service providers for persons with intellectual disabilities about the described problem. MDDSZ asked those providers for more detailed expert explanations on the implementation of specific treatment of persons with PWS within the framework of existing work programmes and individual plans. MDDSZ also requested information on the number of users with PWS included in the service network of care and work centres. It proposed to the Community of Care and Work Centres of Slovenia to organise a meeting in cooperation with experts in this field and the Society for Helping Persons with Prader-Willi Syndrome, at which they would discuss the issues and make possible proposals for solutions or improvements. MDDSZ informed the Ombudsman that several care and work centres and training, work and care centres, even those that do not have users with PWS, have written that their institutions are suitable for people with PWS.

Prior to the Ombudsman's letter, MZ was not aware of the problem of persons with PWS after the age of 19 or 26. In June 2022, it obtained information about this issue from the Rakitna Hospital and the Youth Spa Sanatorium Rakitna. It also explained that it has not yet formulated a proposal on how to organise the rehabilitation of persons with PWS over the age of 19 in the future, therefore it addressed the request for consideration and a proposal to resolve the problems of these persons to the Extended Expert Council for Paediatrics and the Extended Expert Council of Internal Medicine. MZ will supposedly connect with MDDSZ and, after receiving answers and proposals from the aforementioned institutions, prepare proposals for solutions. MDDSZ and MZ will supposedly also discuss the issue with representatives of user groups and representatives of providers in the field of social and health care at a joint meeting.

The Ombudsman noted that solving the problems with the cooperation of the two ministries has begun. We expect to be informed of the adopted solutions. We will monitor the problem and, if necessary, become more intensively involved in resolving it. 9.4-24/2022

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