A special offer for Young MS patients at a MS hospital

Brita Loevendahl, Director of MS Hospitals

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Presentation: IMSF, Berlin, september 2003

At first I would like to thank the IMSF und der Deutschen Multiple Sklerose Gesellschaft for arranging this conference and for your interest in hearing about a new offer for young ‘newly diagnosed’ people in Denmark.

The Danish MS Society runs two MS Hospitals: one hospital is in the western part of Denmark (Ry), the other one in the eastern (Haslev).

This paper is about a new unit for young persons with MS that we are planning to open at the Haslev hospital January 2004. The unit will be placed in the old main building build as a tuberculosis hospital 100 years ago. It is a very well kept and beautiful building if you ask me. About 10 years ago the old multi-bed unit was closed down and replaced by a new building with single room. Since then the 300 square meters on the first floor have not been in use - which is a pity. Today the building contains the kitchen, occupational therapy facilities, meeting- and guestrooms. And soon the first floor will become a new unit hosting rehabilitation courses for young people with multiple sclerosis (ms) and our aim is to provide suitable and tailor made courses for this specific group in perfect surroundings. The number of participants on each course will be 8 persons.

The headlines for my presentation are:

·  The historical background – why focus on young persons with ms?

·  The process from idea to reality – a working group

·  How far are we today

·  The definition of ‘young’ in a Danish ms context

·  Who is the target group of this offer

·  What is the overall goal for the new offer and how is it organized

·  The age issue and how participants are grouped

·  What new approaches are needed

·  How are the often older staff member challenged by young persons with MS?

·  Conclusion

Since the year 2000 the Danish MS Society have been trying to persuade the Health Authorities to support a special unit for young persons with ms. In Denmark rehabilitation is free of charge for the user because it is tax-financed and covered by the Health Authorities if your General Practitioner or your Neurologist refers you. However, this does not mean that the most suitable rehabilitation programs are on offer. The background for our project was a recognition that young people with ms are not sufficiently catered for by available offers. When young persons enter the MS-hospitals, they are often the only young person, which can make them feel very frightened and very alone. Not because their fellow patients are not nice to them but as a young person – and often the only one between middle-aged people – you can feel very alone in an existential way. Having this disease – and not really knowing how it will affect you and your life, maybe not really knowing who you are yourself – yet, and not really knowing what to do with your life – it can also be a very frightening experience meeting others with more severe ms. Creating this unit will of course not take the fear of meeting others with more severe ms away from you, you will still meet them when you are around at the hospital, but you can withdraw to your own unit, away from the others and you are no longer alone – you can talk to peers about your feelings.

After having received feedback from several young persons with ms saying that they didn’t feel that the present offer at the MS hospitals were suitable for them – some of them characterising the hospitals as nursing homes for older people – the Danish MS Society formed a working group consisting of young persons with ms who were asked to design their dream rehabilitation unit. They did a really good job and their ideas were handed to the board of the hospitals and then the negotiations with the Health Authorities began. It has taken a while but in the spring this year we finally received an approval to run a three year trial period with a special unit for young persons. This fall all the last formal approvals of the project were given and we expect to welcome the first 8 users January 2004.

The process from idea to reality – a working group

Having reached the conclusion that a new service was required, we initiated a working group consisting of staff members from both hospitals and young persons with ms.

The working group consists of a psychologist, two physiotherapists (one trained in group processes), an occupational therapist, a nurse, a social care assistant, three young persons with ms and I.

The working group is also an example of a model for organising our work that we are currently adopting. We are developing our services to people with ms at a general level – and we are doing so by initiating projects steered by working groups consisting of both members of staff and users. We find it very important to bring together and utilise their different kinds of perspectives on ms. The young people in the working group were not randomly selected from the pool of young people with ms. We asked the Youth Committee in the Danish MS Society to help us select candidates who should: represent different age groups, distant regions of Denmark (will they use a unit placed far away from home), and some who have used the MS hospitals and some who have chosen not to use the hospitals. Finally but not the least they should have an interest in organizing a good offer for young persons with ms. The three young persons selected have been 18, 27 and 30 years old and have represented the above mentioned profile. They have been very valuable co-workers in the group.

How far are we today

Today we are ready to do the final and detailed planning of the courses. We want to offer these courses to young persons with ms in Denmark, but only as one option amongst others. It will be offered nationally, but if a young person within the target group wants to go to one of the MS hospitals for an ordinary course of rehabilitation he or she is free to do so. We don’t know beforehand how popular this new offers will be and therefore we start out in a small scale offering few courses in the beginning of 2004. Depending on demand we will do a number of courses in 2004.

Experts were called upon to provide suggestions on how to design the Youth unit. The suggestions were presented to the working group, who desided to appoint the designer Liselotte Risell. Our vision is to create a never seen before non-hospital like unit for young persons. It will consist of eight rooms spacious enough to invite partners or children to come and visit and stay overnight.

The keywords for the interior design are reflexions in depth, tranquillity – maybe almost ‘zen’-like. The spacious room rooms are divided into smaller ‘rooms in the rooms’ by a four-poster bed and a wall behind which you have a handwash and the possibility to brush your teeth and do your make-up in your private room. The unit will be organized so that you in the center have a zone for learning and social activities – the vivid zone so to speak – while the single bedroom and the area outside it will be a more private and quiet zone for reflexions and rest.

Who is the target group for this offer

In the beginning the target group was termed ‘newly diagnosed’. Today however we prefer/are using the terms ‘relatively newly diagnosed’ and ‘self-reliant’. The reason why we have chosen the term ‘relatively newly diagnosed’ is that we know from experience that ‘newly’ is not only a question of a specific period of time, one year or two years for instance. With a disease like ms it is as much a question of when the individual finds that ms actually affects him or her and his/her life. This can occur at very different times after the diagnosis. For some it occurs instantly after having received the diagnosis, for others whose first strategy – and possibility – is to live on and ignore the diagnosis it might be later, one year, two years or five years after the diagnosis. This new offer is for those who have reached the stage where they want to take a deeper look into ms and its possible influence on oneself as a person and on ones life, and therefore admittance shall be flexible in terms of time of diagnosis. The offer will be available right after the diagnosis and it will be available in the years following diagnosis. However we are stressing that the target group is persons who are in the process of getting used to living with ms and its consequences – and hence they are not yet experiencing severe symptoms and do not require much care assistance.

How is ‘young’ defined in a Danish ms context?

I am not sure whether this is the case all over the world but in Denmark we have a specific definition which allows people to have married, gotten children – and even having divorced – several times - and still be young in a ms context. We define being ‘young’ as being under the age of 40. The age span in the target group is therefore quite wide and the group of young persons with ms in Denmark is distributed like this:

Age distribution

Under 20: 14

20-24: 75

25-29: 254

30-34: 425

35-39: 699

Total 1467

Source: The Danish Sclerosis Register, 2003

We don’t know beforehand how many in this age group meet the definition of the target group – the more exact knowledge will of course influence the actual demand of the number of courses. Right now we have to – in connection with the visitation – to decide for each person if he or she is within the target group.

What is the overall goal for the new offer and how is it organized

The main purpose of these courses for young persons with ms is for the participants to identify and develop their own resources and abilities to cope with a new life situation with ms.

Overview of courses

The first part of the course will be a 5 days information course addressing all the questions about ms: What is ms, what kinds of treatments exist, physical and phychological consequences of ms, what can I do myself etc. During this introduction the participants will also be introduced to the ms network, the Youth Committee in the Danish MS Society who runs clubs, a chat room at the Society’s web site and in many others ways offer support, help and counselling.

The main purpose of the introduction course is to provide information so that the participants gain knowledge about ms and learn which support services and treatments are available.

This first introduction is followed by a three weeks rehabilitation course where focus is on empowerment.

The main purpose of the longer courses is to initiate learning processes whereby the participants develop their abilities to cope with living with a chronic illness – ms.

Other purposes include that the participants:

·  Gain knowledge, insight and learn strategies that make living with the disease easier and help the participants to live a life resembling the one he or she wished for

·  Get the opportunity to form networks with other people in similar situations

·  Identify and develop their own personal strategies to cope with living with ms and learn to utilise their own potential as well as respecting their own limitations

Relatives: partner, children, parents, sibling, friends are invited to participate one weekend in connection with all the longer courses.

The age issue and how participants are grouped

What about the age issue? Considering the age span mentioned earlier one could think that the participants would be divided according to age group. The working group found that differentiation was important but not so much in terms of age. The only exception is that a special offer to teenagers with ms will be provided. We all believe that getting ms at such a young age is a very special and distinct situation. An age where the individual is struggling to find his or her own identity, trying to find out what education or work to aim for, trying to find a partner, a suitable life style and dealing with many other important issues. It is also a very difficult situation for the teenagers’ parents – how can they remain good parents? By doing what they would have done if the child hadn’t got ms or should they be more protective? It is also very difficult to be a sibling to a young person with ms. As our youngest person in the working group said: “Where I live I’m the only one I know of who have ms. And the only one my parents and siblings know of. And it is difficult for me to explain that some days it is nice to be treated as if I didn’t have ms and other days it is a burden, because I’m so tired and get easily irritated. But on the other hand I don’t want to be pitied”.

We will therefore offer a two week rehabilitation course specifically for teenagers with ms and offer their parents and siblings a course over the weekend in between the two weeks, so that we simultaneously offer support and possibilities for self development to the young person and to his or hers closest family and friends.

Apart from recognising the need for providing a special offer for teenagers with ms, the working group found that age is not the most important difference between people aged 20-40. Instead we found that in our modern or post modern times life style is the most important difference. Life style is the single most important factor especially in terms of whether you have children or not – if you have the responsibilities of parenthood and supporting a family. Because we can live our lives in many different ways and choose when to have children, you can be 35 years and live a life without children, still be a student, have time for friends, social and cultural events etc. But you can also be 25 years, have a full or part time job and two children and all the obligations of parenthood and raising a family.