Supervision of specialist medical care at home for children

Care and treatment that usually occur at the hospital are increasingly given at home. This also applies for (specialist medical) care and treatment of children. For example, a special infusion, tube feeding or wound care. With this form of care, the medical specialist remains responsible for treatment of the child. But other care providers, e.g. home care, provide treatment and care. The GP must also be up to date about the situation. Thus, there are often several care providers involved in the care network of the child.

An example

A child receives an infusion treatment at home and also goes to school. Do people know what to look for and how they can support the child? Will home care also provide care at school? And is there also a task for the teacher? In short: there are many things that need to be coordinated and transferred in the care network.

Care network child

What does the Inspectorate focus on?

The Health and Youth Care Inspectorate looks at the overall care and treatment in care networks. This type of supervision is different from our supervision of individual GPs, home care or specialists. The Health and Youth Care Inspectorate wants to gain a better picture of the performance of care networks for children. These are children who receive care at home in their own environment, while the hospital specialist remains responsible for the care provided. The Inspectorate has assessed the quality of the care the children are receiving. The Inspectorate has also investigated the cohesion and the cooperation in the children's care networks.

What did the Inspectorate find in the children’s care networks?

Specialist home nursing and care for children is provided in the children's home and their own environment wherever possible. That is a positive finding. Children, parents and providers of care and assistance are also happy with this, although the Inspectorate also believes there are vulnerabilities, risks and complicated problems.

Offering specialist care at home always involves (a variety of) providers of care and assistance. However, the paediatrician is and remains the doctor with final responsibility. The paediatric nurses are often extremely experienced and practical and very dedicated to the child. Parents take on the very demanding coordinating task and the care tasks. As a result the burden on parents is often significant. The children in question are vulnerable and the situations at home are complicated. A single faltering cog in the child's network can have huge consequences. The Inspectorate met families where the care is properly integrated. However, other families were still having trouble finding their daily structure, routine and rest.

While technology used to limit care at home, this is no longer the case and equipment is now used widely. By contrast, care providers still do not make maximum use of the opportunities that technology offers.

The Inspectorate has also discovered other factors that limit the availability of specialist care at home, in the children's own environment. These include a deficit of paediatric nurses, overburdened parents, scarcely any informal care and no backup. The paediatrician does not have much of an insight into the care provided at home, the children's own environment and the home situation. In practical terms, therefore, the paediatrician has difficulty fulfilling his role as the party with final responsibility.

Generally speaking it is perfectly possible to provide specialist nursing and care for children at home, in their own environment. The providers of care and assistance are very engaged. They do everything they can to ensure that things go smoothly for the child and the parents at home. It is important that things are kept that way.

The Inspectorate believes that certain things need to be improved

Backup needed for parents

Parents play an important role in terms of care at home. They often take on a large portion of the care tasks, as well as playing a managing and coordinating role. It is important to support parents in that respect with tailor-made solutions. A sufficient number of professionals and backup by those professionals are also essential. There have to be sufficient paediatric nurses and (respite) care must be offered in the region.

The medical line has to be clearly defined

There needs to be more clarity about the way in which the paediatrician/doctor fulfils his/her role as the party with final responsibility. General Practitioners do not feature much. Coordination is required in order to distribute tasks between the paediatrician and the General Practitioner. Coordination is also needed between the paediatrician and the paediatric nurses. The question is how does the care network implement the joint management role fulfilled by parents and the paediatrician?

Good cooperation between professionals is essential, partly in view of the existing employment-related issues.

More unity in terms of policy: regular consultation, coordination and evaluation are needed. That applies both within care institutions and to the care providers in the network. There has to be time and space for this.
Care needs assessment: there need to be more detailed guidelines for nurses and greater clarity about the implementation of conventional care.

The sole traders used must comply with legislation and regulations (e.g. (joint) record-keeping).

Attention needs to be paid to medication safety: numerous prescribers and pharmacists are often involved in the care network. They need to fulfil their role properly. An up-to-date overview of medication has to be available if care providers are involved in administering them. 

The Inspectorate is asking the sector and professional organisations to start work on the points for improvement. The Inspectorate also expects the individual network partners to tackle the points for improvement that apply specifically to them.