Module 3: Cooperating with

Help with daily living

The amount of assistance that LTMV users need for daily living varies considerably. Many are independent, but those who require a ventilator during the day or around the clock generally need a lot of help. When therapy is life maintaining, around the clock supervision is necessary with qualified helpers, who can continually ensure that the therapy is working as intended.

What legislation says

The types of services that can be offered by the public sector are regulated by legislation, and a distinction is made between the responsibility of the specialist health service and the municipal health service when offering services. In terms of processing the support that is needed in connection with LTMV, the municipality shall pass an administrative decision on the type of support to be given, where it is to be given and the amount of support to be given.  At the same time, there are also requirements regarding the provision of acceptable services with a minimum standard. The wishes of the user shall also be weighted. LTMV therapy is defined as a specialist health service treatment given in the home. This means that the specialist health service has far more responsibility for this type of therapy than is normal for other diseases. In many cases, the helpers can be relatives and/or untrained personal assistants. This means there might be a grey zone when assistants lack formal competence to carry out healthcare tasks. Therefore, the specialist health service must set the standard and ensure that those offering the service within the municipality comply with it. That is, the specialist in charge of the therapy is responsible for training and following up patients and those offering the assistance within the municipality.

Individual adaptation

The ideal organisation of the offered healthcare varies from user to user, irrespective of the medical diagnosis. The living conditions, family situation of the user, as well as whether he/she lives in an urban or rural area will affect the organisation. The user can contribute and have the most impact on the service if it is organised as so-called BPA, i.e. user-controlled personal assistance. However, this scheme passes more responsibility onto the user and, in some cases, financial responsibility as an employer.

Individual plan

The specialist health service can recommend using health personnel as carers in the homes of users who have problems with communication or complicated requirements in terms of the help they need. In such cases, the municipal home care service will often organise a team of helpers and a nurse will be in charge of the team. Preferably, the priorities and goals of the user through the service are then regulated in the form of a so-called individual plan. This describes how the service shall function overall to achieve the goals the user aims to achieve through the therapy. Others take care of management tasks, such as shift rotas, pay, HR responsibilities, illness and holidays, etc.

Following up medical treatment

In terms of the medical treatment that LTMV entails, team leaders must follow the procedures recommended by the specialist health service, who in turn must have a system in place for following up compliance in order to safeguard proper therapy. But, obviously, therapy at home can only be followed up to a certain extent. Therefore, the user and municipality must adequately ensure that the competence of the specialist health service can be transferred and developed in an efficient way, for example, to avoid having to consistently train new assistants.

An example

The following options could be used for a user who requires around the clock LTMV:

• Own dwelling:
  • Assistance from a team of untrained, user-controlled personal assistance (BPA).
    • The user will be the team leader or an assistant will be delegated the role of team leader and employer responsibilities will be delegated to relatives, a user organisation, private company or municipal home care services.
  • A combination of BPA and municipal home care services
  • A team of health workers (under the municipal home care services) with a team leader, often a nurse
  • (Community nurse, nursing pool).
• Shared housing with a pool of assistants.
• A combination of one’s own dwelling and an institution/shared housing.
• (Nursing home)

The municipality has a duty to offer the type of schemes described above, but they can decide which service is viable, and its scope and organisation. The wishes of the user shall be weighted.

The specialist health service determines indications for therapy, establishes treatment routines, and gives training and follow-up with guidance for users and assistants. It cooperates with the municipality concerned regarding the execution of training, and gives advice on the organisation of therapy when necessary.

Living well