Empowered to gain control. Care and support for people with multiple problems

More and more people have to deal with a combination of physical, mental and social problems. To meet their multiple care needs, many different healthcare providers and social care workers are involved from different areas and organisations and with varying frequency and duration (sometimes for a short period, sometimes longer). Informal caregivers and volunteers also play an increasingly important role in this. This development is interpreted as a shift from care in institutions to care in networks. This might suggest that such networks are a well-defined whole; the reality, however, is different. Multi-dimensional care needs mean that the required network may look different to everyone. It requires tailor-made work and makes collaboration difficult to secure in set rules, structures or ‘care chains’. People with multiple problems often get lost in the complicated systems of care and support and have trouble maintaining an overview and taking control. People who are already in a vulnerable position are at risk of losing more control over their lives and the care and support they need. This means that it is likely that their personal needs and options will not be heard or will be ignored.

The Minister of Health, Welfare and Sport (VWS) has asked the Council for Health and Society () for the consequences of this growing practice of care in networks. In this advisory report, the responds to the question of how care and support can be better tailored to the needs and wishes of people with multiple problems. Also, it focuses on what this requires from the organisation, financing and legislation of care and support services.

This advisory report shows that answers for the problems of people with multiple problems are not easily given. These answers can differ from person to person. It remains a constant search. The organisation, structure and financing of care and support are not always tailored to these multiple problems people face. Boundaries and barriers emerge at the level of the various systems, financing, information exchange, quality and monitoring, and at the level of professional practice.

The RVS warns of the (policy) tendency to deal with this ‘misfit’ with new structures or cohesive care models. In practice, this often leads to new barriers and boundaries again. The Council is of the opinion that boundaries and barriers are inherent in the establishment of systems for care and support. In this advisory report, we therefore look for a solution in supporting clients and involved healthcare providers in dealing with these boundaries and barriers.

In the RVS’s view, people should be empowered to take control of their lives and the care and support they receive to the extent possible. But people differ in the degree to which they are able and willing. Therefore, we propose a graded approach:

  • People who are able and willing should have an easier time taking control over their care and support. A legally safeguarded personal life-care plan is the means to achieve this. This plan contains all the agreements the various healthcare providers make with the client and their follow-up. The client has control over the plan: he or she determines who gets access and what information may be exchanged. Healthcare providers are required to cooperate with the plan. The plan must be available digitally so that relevant data can easily be exchanged.
  • People who want to have control but are unable must be explicitly presented with the option of appointing a close relative or acquaintance who can act as an authorised representative on behalf of the client.
  • People who (temporarily) do not want to or cannot take control should be given the opportunity to call on a coordinating practitioner who can coordinate care on behalf of the client. This coordinating practitioner is a professional who has a great interest in the healthcare and support provided to the client involved. He has the mandate and formal authority to carry out the personal life-care plan in consultation with the client.

In addition, the practice of care in networks involving people also calls for ‘boundary work’ by all parties concerned in order to come up with a joint, suitable approach. This requires not only competences and authority but also discretionary space and the willingness to look beyond the boundaries of their own discipline and/or organisation. Care providers must invest in both training and practice. By extension, it demands that care purchasers and supervisory bodies provide the necessary space.