Thank you very much for the invitation to speech at this conference.

In Denmark we have about 400 patients with cystic fibrosis.
We have 2 CF centres - one in Copenhagen and one in Aarhus.
Almost all the Danish cystic fibrosis patients - children as well as adults - are seen at one of those two centres. 
We don't have special centres or clinics for adults.

I work at the CF centre in Aarhus, in the outpatient clinic.

We have about 120 patients at our centre and most of them are seen once a month in the outpatient clinic.
Only a few of them are hospitalised.  Some are hospitalised for some days when they are diagnosed, but most of the newly diagnosed are just seen very frequently in the clinic.  If the child is in a good condition the parents prefer to come to the clinic very often instead of being hospitalised.
Those who are chronically infected with pseudomonas aeruginosa get intravenous antibiotics for 14 days every third month, but almost all of them prefer home treatment.
The older ones are hospitalised when they get so ill that they cannot stay at home any longer. 

We have a CF team.  It consists of the consultant who is the head of the CF centre, 3 paediatricians, 2 nurses in the outpatient clinic, nurses in the ward, a dietician, 2 physiotherapists, a psychologist, a social worker and a secretary.

In my opinion we have a very efficient team.
We have a weekly team meeting which is given high priority by all the team members.
At the meeting we discuss the patients who are hospitalised at the moment and the patients who have been in the outpatient clinic during the last week.  In that way we discuss all the patients at least once a month.
After a CF congress like this one every team member who have attended the congress tells what he has learned by the congress. 
Frequently we discuss various topics to keep everyone informed and to ensure that as far as possible we have the same attitude to things concerning CF.

In Denmark we don't have any CF nurse specialists. 

I don't have a description of my job.  So what I can do is to tell you what I actually do and what I am responsible for.

My job and my responsibility can be divided into 6 areas:

1. patient care
2. education
3. consultant in CF for the nurses in the wards
4. contact to the medical firms and the patients association
5. development
6. team-building

  The first area is patient care.
First of all I am responsible for the care of the CF patients and their families in the outpatient clinic.

- I make the patient and his family feel comfortable and confident, so they feel free to ask questions and tell if anything bothers them.

- Together with the patient and his family I plan the visit in the outpatient clinic so it becomes as convenient as possible for the patient.  I.e. no waiting time and coordinating various investigations.

- I talk with the patient and his family and ask them to find out what is the best help I can give them.  The best help might be to make an appointment for them with the psychologist.

- I draw on expertise from the other team members when necessary.

- I teach the patient and his family to cope with difficult things or situations i.e. blood samples or being on the transplant waiting list.

- I do the practical nursing tasks as lung function, laryngeal suction etc.

- I see some of the patients who come acutely to the clinic.  When I estimate that it is not necessary for the patient to been seen by a doctor, I talk with the patient, take a laryngeal suction and check their lung function.  Then of course I write my findings in the patients medical record.

- I have interviews with patients and their parents about i.e. children who deny to take their treatment

In some way I am responsible for the patients in the ward, too.

I visit patients in the ward.  The patients who are hospitalised for the first time.  They know me from the clinic, so in order to help them feel confident with the hospitalisation I visit them very often during the first days.
I also visit the newly diagnosed patients in the ward.  It's important that they get to know me rather quickly, so they feel confident about phoning me when they get discharged from the ward. 

I find it important that I'm available for the patients and their families.  They can always phone me and count on my doing my best to help them solve their problems.
I phone the newly diagnosed who are not hospitalised I do it to make them feel confident of having their CF child at home.  I phone them because I think it is difficult for them to phone me owing to the crisis they might be in.   
Phone calls are a big part of my job. 
I always write about the phone calls in the patients medical record.

I get phone calls from the general practitioner, the local hospitals, health visitors etc.

The second area is education.
Education can be divided in 3 areas:

1.  education of the patients and their families
2. education of the staff
3. education of myself

Information and the teaching of CF to the patients and families is a very important task.  There is the continuing teaching where I use any opportunity to tell the child as well as the parents about cystic fibrosis. 

Then there is the teaching of the newly diagnosed.  The doctor is the one who teach them systematically about CF.  The rest of the team and I follow up the teaching, answer questions and talk with them about the difficulties of getting and having a child with cystic fibrosis.  I also offer to establish contact to other CF families.

We have a CF school for the 10-year-olds and the 14-year-olds.  I am responsible for the CF school and that is a big job.  I have made a text book for the 10-year-olds and one for the 14-year-olds.  I plan the lessons and I do the teaching together with other team members.

Education of the staff.
Continuous education of the nurses in the ward is necessary, so I arrange courses about CF for them.

Self-education.
To maintain competency it is necessary to go to CF conferences, courses etc. and to meet other CF nurses outside your centre and discuss various topics with them.  You have to keep well informed about new knowledge of CF, new treatments etc. 

The third area is the job as consultant in CF for the nurses in the ward.
In the wards they have patients with various kinds of diseases, so it is not possible for the nurses there to be experts in CF.
As mentioned before, I arrange courses for them, and they use me as a consultant in CF.  That means that for example I help them to implement new kinds of treatment and they call me when they need my help.  It could be a patient and his family who need some information, it could be the nurses not knowing how to use the equipment for inhalation and so on.

The forth area is contact to the medical firms and patients organization.
I keep in contact with the medical firms in order to keep up with the new treatments.

I have frequent contact to the patients organization.  I attend to the patients meetings and I help to plan and to hold courses about CF for the patients and their families.

The fifth area is development.
This area is very important and I find it very interesting.
Only very few of the team members know all the patients.  I do.  I have the overall view of the patients.  The head of the centre has that, too.  We work very closely together.  And we often discuss how we can do things even better.
When I get new ideas I always get great support from him.
 
I have established the CF school for the 10-year-olds and for the 14-year-olds.  The patients are very fond of it and I am very proud of it.  I think that's the right way to teach the children systematically about CF.  I think it matters.
Some of my colleagues have taken up the idea and are now establishing diabetes school, asthma school and arthritis school.  That pleases me very much.

I have made guidelines of how to run a well functioning team.  To be used by the CF team, but also to be used by other teams in the children's department.

Together with other Scandinavian CF nurses I have made a Scandinavian CF nurse association.

Together with the dietician I have started the tradition of holding a Scandinavian workshop for CF nurses and CF dieticians every second year.  We have held two workshops now and both of them have been very rewarding.

I have made other smaller things i.e. booklets for the patient and I still have ideas that I want to carry out. 

The group of children that start at school need extra help.  The parents need help to tell the teachers about CF and the parents need help to avoid overprotecting their children.
The ones on the transplant waiting list need extra help, too.
Some of the girls at the age of 12-14 find it attractive to be very skinny.  We have to change that view in some way.
As you can hear there are lots of tasks to get down to.   


The sixth area is team-building.
The CF nurse has a prominent role in the CF team.
Together with the other team members I am responsible for the team being well functioning. 

Every team member can take up special topics that need to be discussed.  I often do that.  It could be i.e. each team member's role in the team.  Or special patients where we need to decide if it would be better to change the treatment strategy.  Or the team members attitude to the patients and the treatment.

The decisions taken on the weekly meetings must be carried out.  It could be me or one of the other team members.  That depends on what decision was taken, who has the best contact to the patient etc.

I arrange social events for the CF team.  It is important that the team members now and then have a pleasant time together.  Not everything has to do with CF.

An area I find obvious for the CF nurse is visits in the patients school, kindergarten and the like.  Together with the patient and/or the parents you could tell the teachers about cystic fibrosis, what to keep an eye on and encourage them not to overprotect the patient.
I haven't started that yet, but the head of the CF centre thinks it's a good idea, so hopefully that will soon be a part of my job.

As mentioned before we have no CF nurse specialists in Denmark.

One problem is education, special training.  We don't have any special courses in cystic fibrosis in Denmark.  So you can't get a certificate proving that you have advanced knowledge of CF.  Well, you can go to London and attend a CF course there, but that does not give you any competence in Denmark.

The problem might be solved.
In Denmark we have just about 400 CF patients and therefore not very many nurses working with CF.  So few that it's difficult to make a special course just for those nurses.  In Norway and Sweden they have the same problem.
As I said earlier we have made an association of Scandinavian CF nurses.  One of the purposes of this association is to establish a united CF course for the Scandinavian CF nurses.  It might take a couple of years, but I hope we will succeed.

Regarding the CF nurse specialist, I have already started negotiation with the management and I have great support from the head of the CF centre, so hopefully we'll soon have a CF nurse specialist in Aarhus.

Thank you.