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Daily assistance

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

Living well – text version

I teach them about assisted ventilation, that’s what I emphasise before anything else that they can’t ignore alarms, that they know how to use the equipment that’s necessary when the machines fail. Then you take a bag and use it, breathe manually. That’s how we see it really the paramedics often use it on people who have fainted. So it’s important that they know how to use it and since I have a tracheostomy they need to know how to remove mucus from the lungs. And to get the mucus out we use a Cough Assist Machine. The Cough Assist Machine gets the mucus out and then you put the suction catheter down to remove the mucus. We have noticed that when there has been health professionals, they have been scared to put a suction device inside a person because they learn in school about everything that can go wrong. While the assistants we train, are told why we need to remove the mucus. Of course we teach them to be careful but we don’t start with telling them the consequences we tell them why. We need to remove the mucus and then they help you do it. You have assistants around day and night and you feel safe with them and know. So it’s also important that the assistants think for themselves, if there’s something that they haven’t been told, that they’re not afraid to ask you “hey, what about this and that”. It can be very important that you don’t think too much for the assistant. It could happen that you think they have been told, but they haven’t, but are afraid to say something. So I want to encourage the assistants to not be afraid to let me know. I think it’s important to be clear about what you want from the assistants, what they should be. Be ready and not afraid to tell when something is not working. Give feedback and praise for the tings that work. Otherwise you must be available for the employee like a leader. That you are leader and employee, and don’t expect to be treated like a best friend. When you live so close to each other, you create close relationships. It becomes kind of a friendship. But you don’t have to worry about the friendship, it’s just nice to be with someone you are comfortable with. But it shouldn’t be exploited, so that people think they should get something extra only because you are best friends. That the limit for us. But to be with someone you are comfortable with, that’s important. It’s an extremely nice job and when you get home you have a big smile on your face, feeling that you have done a lot. Had a barbeque in 20 degrees minus and other things you wouldn’t normally do Bjørn and Øyvind never see any limits so if they want to have a barbeque they have one. It’s very nice to see people who do what they want to do even it you think that they have a limitation. They don’t live by their limitations, but by their wishes. Even if you have to shuffle snow from the terrace for two hours, It’s very nice to see people who do what they want to do even it you think that they have a limitation. They don’t live by their limitations, but by their wishes. I have more or less given up on finding a job. So I like to see myself as a person who enjoys life. Good food, good wine, to enjoy life, that’s important to me. So I cook a lot, and it’s a hobby I share with my brother. We have learnt to enjoy life.