Around 13,000 seriously ill children live in the Czech Republic. At the same time, they and their families need adequate, accessible and comprehensive care, not only while in hospital, but especially at home. Unfortunately, we currently do not have the full range of necessary services available nationwide with adequate quality. A huge problem everywhere, for example, is early care, which has been waiting for three quarters of a year. In the long term, we encounter a health and social frontier, where some families get lost and the provision of these services itself is extremely difficult due to the overlap of the two spheres. The concept of caring for children and adolescents with severe life-limiting disorders and their families, which was presented at yesterday’s seminar held at the premises of the Senate of the Czech Republic , is now trying to pave the way for further development of care for sick children and their families.
“We care for children with serious diagnoses, whatever they are, and their families. We think about their needs, and we should do it in a systematic and systemic way. Enthusiasm is very important, but it is important to catch it and introduce it into the system,” explains the head of the children’s department at Hořovice hospital, Mahulena Exnerová.
Therefore, the ministry also encouraged experts to develop conceptual materials regarding the care of critically ill children, which the expert group managed to develop over the past year. The concept was initiated by the Section of Palliative Care for Children of the Czech Society for Palliative Medicine, and the process was coordinated by the Pallium Institute.
“We have agreed on a number of key issues. The first important point is that care should be individualised, i.e. the care of each family should be based on their specific needs. Another big area of development is that care needs to be coordinated and monitored. It is also essential that care is available – that a middle-class family with a child born in Prague, as well as a family from from an excluded locality, can access it. In addition, the care must be comprehensive and centered on the family – it is the family that determines its appearance”, concludes Jiří Krejčí, director of the Pallium Institute.
According to him, the concept is data-driven, evidence-based and has been worked on by a large team of experts representing various care segments. She also scoured the comments, which received 133 comments. These were then settled by a team of experts and approved by a panel of experts. The companies and professional organizations concerned commented on the finalized document and received strong support.
Children should not stay on high beds for long
There are three fundamental points in the concept. First, it is necessary to identify the family in need of palliative care, begin to work with them, and create a care plan that not only outlines what will happen in the hospital, but also afterwards. Already at the hospital, they reflect on the needs of the family and the health and social services of the region begin to negotiate.
“Children shouldn’t be in acute care beds for long, and certainly not in large teaching hospitals. For families, it’s a depersonalized environment away from home, loved ones don’t reach the child and don’t don’t have daily contact with him,” says Lucie Hrdličková, head doctor of Motol’s child support team.
The second phase is to ensure adequate, accessible and coordinated care at home. It often happens that they are alone with the whole family and do not know where to turn. “We know that many of the services we are talking about may be available, but families do not know about them. However, there are also services that have significantly limited availability, i.e. they do not exist not at all in the Czech Republic or that they are very limited. It is also essential that the services at the place of residence are coordinated. We are talking about the fact that the child and the family have an assigned case manager who is a guide all lifetime with a serious diagnosis. It can be a few months, but also 15, 20 years,” says Krejčí. However, according to a survey of families by the Abakus Foundation, only 20% of parents say they have recourse to cooperation of the care coordinator.
An example of a service that is tragically lacking in our country is early care. “The insufficient capacity of the early care service is a factor that crosses the whole country. The waiting time, which is absolute nonsense for early care going against the meaning of this social service, can go up to 250 days. Imagine having a child with a disability, wanting professional help and support, but having to wait 250 days,” describes the director of the Prague branch of the Society for Early Care Jitka Barlová According to her, there is also a huge difference in the financing of care between different regions: “We are talking about real figures for a share of 400,000 in one region and 1.1 million in another region. How do you provide the same quality service for that money? says Barlová.
At the same time, the family must be provided with relief and respite services so that they can rest. Especially for families with higher demands, the option is often lacking. According to the concept, these services should be offered by inpatient children’s hospices.
Finally, end-of-life care must be provided, the family must be chosen to choose the place of death and then mourn. “However, bereavement assistance is not systematically reimbursed, so parents and people in need have to pay for a large part themselves,” explains Irena Závadová, head of Hospice Cesta Home.
Long Achilles Heel: Health and Social Boundaries
However, as in other areas, palliative care for children is once again exposed to one of the biggest weaknesses of the Czech system, namely the social and health border. “The biggest problem is the transition of the family between health and social, or another system. This is where our families fail. If the cooperation of these two key ministries does not work, then we lose families. We should avoid this in the future,” stresses Jitka Barlová.
This is also confirmed by Radka Vernerová, director of the non-profit organization Dům pro Julia. Since 2017, she has been working on the construction of a stone children’s hospice in Brno, which is expected to have ten beds (eight residential and two palliative care hospitals) and is scheduled to open in early 2024. At the same time, the organization already provides rescue services (included in social services) and home care (under health care).
“We are a service at the socio-health border and we encounter a lot of various obstacles in practice. It’s administration and bureaucracy. We started with a social service, and when I came at the regional office that we would like to register it, they were terrified that children in palliative care would die, and it was not social at all. It took us nine months to register, and we heard several times that the word palliative should not be heard. This is a paradox, because the care allowance is allocated on the basis of the state of health, and in the region of South Moravia in 2020 they received an allowance of care of III and IV two thousand children and adolescents. Nevertheless, we have not been able to explain to the region that these families really need to be relieved”, describes Radka Vernerová.
It soon became clear that health services were needed, so home care was recorded. However, the two services overlap and it is very difficult to separate and dissociate (nota bene the pension of each of the treatments in advance). “The concept of health respite care that the concept envisions, we do it in practice, but it’s so complicated that I can’t wait to make the concept a reality and the concept of health respite care is legally established” , explains Verner .
Politicians are also aware of the problem. “The socio-sanitary borders are a huge problem. We talked about it with the minister last week, and we may be able to grasp at least a little of it. But I don’t think we can change that quickly, because these are things that have been going on for decades,” says Lumír Kantor, deputy chairman of the Senate Medical Committee.
“It’s a big debate with the MoLSA. The system is set up completely differently, and I don’t even know if the money can go to flags there to help the needy. After eight years, we l ‘have also met in mental health centers, where we have solved the medical part, but we still do not have the social part solved,’ agrees Deputy Minister of Health Helena Rögnerová.
Will it be possible to create a national strategy?
What will happen to the concept? “It is important for us that this is not just paper, but that it becomes a reality. We therefore want this document to be the basis of a strategy for the care of a seriously ill child. Thanks to this, we believe that we would be able to achieve as many goals as possible over the next few years and reach the global level of care for critically ill children,” says Krejčí.
Lumír Kantor promised at the seminar that he would forward the concept to the Senate Medical Committee, stating that it should be a starting point for further steps.
“Thinking about the needs of critically ill children will be largely complementary to the needs of critically ill adults. This will allow us to move towards something that we have agreed on, which is to improve the availability and level of care for seriously ill children and their families. a timetable so as not to get lost along the way. At the same time, I consider it very important that the individual stages of the concept for children and adults are refined so that we do not create our own strategy for each part of the patients “, says the president of the Czech Society of Palliative Medicine, Ondřej Kopecký.
“If we want to bring about systemic change, it is good to have a concept and a strategy that is a binding document that can be linked to funding sources, organizational and legislative changes. My advice is the problem of associating and making of a strategy for children and adults a binding document”, concludes Martina Koziar, Deputy Minister of Health for Vašáková Health Care.