Cooperating with others

Introduction

Having someone’s home as your workplace is challenging for both the person who lives there and the person who works there. Being the master of one’s home is crucial. At the same time, the person who is working there must feel that it is a good workplace with a good working environment, and that the work is rewarding. This requires mutual respect and trust. Communication is much more than just spoken words. Body language, tactility, interests, the atmosphere and one’s mood are all factors that could contribute to the achievement of good results.

It must be possible for LTMV users to participate in society in the same way as others. Treatment for respiratory failure does not prevent one from going to school, taking higher education or having a job. Personal interests and strength determines the extent of such participation. As an assistant, one shall help the user realise their needs, whether it’s a matter of going to a football match, visiting others, attending political meetings or going to the theatre. For some, it is important to make good food and find the perfect pairing wine, whilst for others it is important to go to the cinema or concerts. Through the video interviews with Øyvind, Jørgen, Vanja, the assistants, and friends and relatives, you learn what is important to them in the roles they have.

Learning outcomes

The main objective of this part of the online course is to point out the most important ways in which assistive respiratory devices can be correctly used when adapted to the needs of users in the broadest sense. Many users of assistive respiratory devices also need assistance when using the equipment and other forms of assistive technology.

‘Cooperating with others’ is about ensuring the best possible cooperation between the user and assistant or helper.

Daglig hjelp

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

User-controlled personal assistance

A personal assistant is primarily a service-providing occupation

The job of a personal assistant is rewarding

Vanja’s experience with employing and cooperating with a personal assistant

Jørgens valg

Jørgen’s choice

Organisation of personal assistance

A user of assistive breathing technique devices, probably needs help with both health and non-health related tasks. For example, help with respiratory support devices and masks, and tasks such as cooking, shopping, running errands, work and company when attending social activities. The tasks vary and the help can be organised and received in several ways, so it is a good idea to consider how the help can be best organised.

What rights do I have?

The Legal Rights Centre has web sites that may help you. The Norwegian Association of the Disabled also has a web site with information that could be useful to you.

About home care

When using the home care service/community nursing service, one receives help during the day at specific times or if, for example, the safety alarm is triggered. It might not always be the same person. You may also have a support person to assist you with social activities, etc. In the following, you can read how Jørgen has organised his daily life.

Jørgen’s opinion on user-controlled personal assistance

" The help I need is organised through user-controlled assistance (BPA). I organise the hours assigned to me by the Borough Administration Unit myself. I choose how and who to employ, and I organise the timetables of my assistants to suit my daily life. So, if I am tired one day, I just sit at home and watch TV. On the other hand, if I want to be sociable and go into town, my assistant will accompany me. That is, I choose the work tasks to be included in each assistant’s job description.

For me independence is a keyword: Being able to decide who I want in my home, when and where I want help, and to organise my own day so I can live my life the way I want. I believe that these factors must be in place in order to be independent.
I feel that this scheme helps me live a more free and independent life on my own terms. I would not have had the same choices with traditional home care. Of course, managing one’s own staff is demanding, but even though it may sound complicated, I believe that most people could cope with a little follow-up from the service provider."

Tasks and training

"My assistants also handle my technical breathing devices. This is something that anyone can learn. In my opinion, one does not need healthcare qualifications in order to learn how to use the equipment that I use. When employing assistants, I like to give them training on how to use the breathing machines, mask, etc., myself, as it is important to me. Through the years, I have developed a few routines on how to use and maintain the equipment. I know these routines the best and I believe that I have the competence to train others. I am not saying that no other routines could work better, but in cooperation with employees over a long period of time, the routines have been tailored to my helpers and me."

Taking responsibility for your own health

Participation in society

With long-term mechanical ventilation one can participate in society in the same way as others. Learn about Vanja and Jorgen’s experiences.

Vanja on participating in society

About Vanja and adaptation in her family

Jørgen’s experience with being employed

Participating in society

I do not currently have a regular job nor do I study, etc. However, from 2007 until 2010 I was employed by one of Norway’s largest broadband providers, as a customer service representative. I also found that using a breathing machine at work was different to when I did not use one. You can read about my experiences and thoughts on using/not using a breathing machine at work.

For most people, the word ‘job’ primarily means doing something that is necessary in order to provide for their families and themselves. Going to work is a necessary obligation; a way to obtain financial security. This has never applied to me. Since the age of 18, I have received the full disability allowance. Therefore, I have never had to fight for financial security. I have never had to depend on myself in daily life. Nonetheless, I still believe that having a job, even if not necessary, is a good way to become included in society. It was also valuable in other ways.

Always liked IT

It has always been natural for me to use a computer in many situations. Even though there are probably millions of possibilities that I have not yet tried, I always imagined working within IT.

I trained to be a network administrator at a vocational college from 2003 to 2006. This led to my first job in 2007. I enrolled on a job-training course through the Norwegian Labour and Welfare Administration (NAV). Whilst on the course, I had one month’s work experience using different types of computer networks. It turned out that my adviser knew someone who was a manager at the company concerned. He arranged a job interview. Three representatives of the company were present and I don’t think I have ever been so nervous as I was when I entered the company’s premises. I should probably have been more prepared for three people analysing me, but I wasn’t.

It all ended with a full-time position, which was eventually reduced to three days a week from 10am-2pm. My duties consisted of being connected to a computer with a headset on my head. Customers telephoned me for technical support for their broadband connection.

Better work with a ventilator

My assistant who accompanied me sat and wrote on the keyboard whilst I dictated reports. Consequently, I had to take a lot of breaths, especially as the words had to be clear and precise. I didn’t use a breathing machine for the first 18 months. As a result, I was frequently absent from work due to respiratory infections and my absence due to sickness was above the norm. In addition, it was difficult to hold long conversations over the telephone without my voice becoming low-toned with confusing speech.

When I finally arranged for a breathing machine on my wheelchair, it wasn’t very long before my workday improved. The lack of concentration and focus I previously endured was quickly transformed to the opposite. It was suddenly much easier to see the context in my work and my problem solving skills were boosted. I struggled to hold a conversation for more than ten minutes before, but afterwards it felt like I had added strength to do my job. My day, after work, also improved. My absence due to sickness significantly dropped to practically nothing. I think management was more satisfied with me after I made the change.

Not always equally motivated...

I will gladly admit that there were mornings when I did not want to get out of bed, when sleep seemed more of a privilege than sitting talking to a dissatisfied and angry customer. After three days at work, I was often exhausted both mentally and physically. It takes a lot more to get up early, and stay focused and concentrate hour after hour, than it does to get up around 11am/12pm, watch some TV and then surf on the Internet. It’s much more demanding.

Nonetheless, that type of life definitely had its advantages despite the stress. I greatly appreciated contributing to society and having a role to play. Prior to starting work, I had nothing to do for a year. When people asked me, “What are you doing nowadays, Jørgen?” I felt that I didn’t have much to tell them. However, when I was employed I was proud to say, “I’m a customer service representative for a broadband provider.” Often the response was, “You’re working?” That’s great! Although, you don’t need to work, but it’s good that you do anyway.” It boosted my confidence to feel that I was part of something bigger and more important than staying at home relaxing everyday. I particularly remember driving home from work. I’m the type of person who finds it boring to be serious for several hours at a time. It was only a 20-minute journey, but I used to send my assistant crazy with all the silly things I said about absolutely anything that came into my head. It was quite the opposite of a typical conversation with a customer. Such moments made my workday worthwhile. In the evenings I could enjoy a film and TV without feeling guilty that I should be doing something more constructive, as I did something constructive during the day.

Helpers’ reflections

Some reflective questions

1. All human beings have the right to impact and take responsibility for their own lives. Imagine if a user wanted to smoke a cigarette, take snus, drink one/five beers, smoke cannabis or drive a car too fast.
   • What would your limits be in offering help as an assistant?
   • Who could you discuss the matter with?
2. An assistant creates a Facebook group for assistants to share experiences.
   • Would you, in your role as an assistant, join the group?
   • What type of ‘ground rules’ should the group have?
   • Would you tell the user, who employs you, that you have joined the group?
   • Would you discuss the matter with anyone before deciding to join the group? If so, who?
3. You are going to employ a new assistant.
   • What would you expect the most from an assistant?
   • What questions would you ask?