Respite care debated in Parliament. Need for standards and adequate pricing for services
- The joint meeting of the Parliamentary Group on Rare Diseases and the Parliamentary Group on Children was devoted to respite care
- Its aim is to ensure the well-being not only of the patient who is under the care of the family, but also of the family itself, who lives in constant stress and chronic fatigue.
- Care has been provided systematically since 2019 under the Solidarity Fund, which is managed by the Ministry of Family, Labor and Social Policy. The program is expected to continue.
- However, it is necessary to develop systemic solutions that will set standards and lead to appropriate pricing of services.
"Respite care has been implemented systemically since 2019 as part of the Solidarity Fund, which is managed by the Ministry of Family, Labor and Social Policy (MRPiPS). It is this ministry that is primarily the recipient of calls to develop systemic solutions that will set standards and lead to appropriate pricing for respite services, " Beata Hernik-Janiszewska , president of the Wrocław Children's Hospice Foundation, said in the Sejm during a joint meeting of the Parliamentary Group for Rare Diseases and the Parliamentary Group for Children.
- We very much hope that the activities under the Solidarity Fund will continue in the coming years - she added.
As she explained, their goal is to ensure the well-being not only of the patient, who remains under the care of their family, but also of the family itself, who lives with constant stress, chronic fatigue, and constant readiness to respond to life-threatening situations . The well-being of this family is of paramount importance for ensuring an adequate quality of life for patients.
She noted that the standards in respite care that should be strived for are:
- availability of care services,
- flexibility of services tailored to the needs of different clients,
- ensuring the comfort of 1:1 or 1:2 care,
- medical safety,
- professionalization of staff,
- annual service limit of at least 30 days.
Standards should, of course, be accompanied by appropriate and adequate funding.
- Our Foundation has been providing home respite care since 2018. Since 2023, we have had a 24-hour, 16-bed Respite Care Home "Kokoszka," which has already accommodated 230 patients. Since 2025, we have been operating day respite care, which is especially needed now during the summer holidays, said Beata Hernik-Janiszewska.
Dr. Michał Błoch , medical director of the Wrocław Children's Hospice and coordinator of the "Kokoszka" Respite Care Home, recalled the six basic pillars of palliative care.
"Our patient has the following priorities: I don't want to be in pain, I don't want to be stuffy, I don't want to be hungry, I don't want to be cold, I don't want to be afraid, I don't want to be alone. We do all of this at the Wrocław Children's Hospice, which operates an inpatient hospice, a home hospice, and a respite care center," he said.
"Parents of sick children expect the availability of such places, the safety of their child during respite care, and specialized care in the form of staff and equipment. In our case, we have all of this in place and are ready for any patient profile," noted the specialist.
He said that palliative care continues during respite care at the Wrocław center. The unit adheres to hospital standards for service delivery and is authorized to make medical decisions, including procedures, to effectively intervene if necessary during the absence of parents.
"The core staff, in addition to the physician, consists of nursing staff who are at the patient's bedside 24 hours a day, as well as a medical caregiver. We can't provide 1:1 care, but we can provide 1:2 or 1:3 care . We also have a psychologist working with us, dedicated not only to patients and their families but also to staff at risk of burnout due to the heavy mental strain," explained Dr. Błoch.
"During respite care, we strive to provide children with medical care and engaging activities that their busy and tired parents typically don't have time for. We have our own entertainment system, powered by volunteers, including seniors who read stories to children, students, and others. We offer occupational therapy, dog therapy, and music therapy," he listed.
He added that patients from various voivodeships, including distant ones like Podlaskie, have already benefited from respite care at Kokoszka. Over the past six months, 77 people have been accommodated in 11 beds, including 45 children and 32 adults.
Urszula Demkow , Deputy Minister of Health, did not hide the fact that although the Ministry of Health deals with diagnosis and treatment, pro-social activities that help counteract burnout among families - caregivers of patients - are also very important.
"For now, we only have isolated areas of good practice, but it's clear they're starting to spread across the country. We're here to support such initiatives. This will certainly require cooperation between various ministries and institutions , which must come together to develop a comprehensive action plan," she noted.
Aleksander Kozubowski from the Ministry of Family, Labor and Social Policy, head of the Office of the Government Plenipotentiary for Disabled Persons, informed that the Office had asked all entities providing respite care to submit comments on this matter in the external consultation procedure.
"We're receiving comments, analyzing them, and they will significantly impact next year's edition of the Solidarity Fund program. We've also sent letters to the 16 voivodes who oversee programs implemented by local government units for the same purpose," he noted.
"I would like to assure you that there are no plans to liquidate the Solidarity Fund – the financial plan is for the next three years, and our office is making efforts to increase funding for non-governmental organizations and local governments for respite care. In 2025, we are talking about a total of PLN 280 million ," added Kozubowski.
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