Nurses Committee Newsletter – Fall 2024

What are things about you that few people know?

Around my 5^th birthday, I spent 4 months in the hospital and since that time I wanted to be a nurse. Saw a lot of different nurses and remember vividly thinking: Room for improvement or at that age: I can do this better. Until I started in nursing I played hockey, trained twice a week and had a game during the weekend. I had to stop due to the different shifts. I have always been drawn to blood or haematology, and I only worked for 2 years on an ENT ward before switching to haematology ward, where besides chemotherapy, bone marrow – and stem cell transplants were done. Since 2004 I have worked in benign haematology.

Name 3 quiet hobbies you love

I enjoy reading thrillers and detectives, but I prefer them in English because a lot get lost in translation.  I enjoy cooking, at the moment more noodle and rice dishes as well as vegetarian. Don’t like baking, don’t really have e sweet tooth. A few months ago I wanted to start sewing, so I had my sewing machine serviced and will start after the decorating is done. The more active hobby is walking and talking with friends during the weekend. Although I try to go for a longer walk every other day.

Can you give us a brief overview of what it is you do in your work?

One of my duties as an Advanced Nurse Practitioner is, making treatment plans in case of surgery, prescribing and coordinating the whole admission and aftercare for all patients. Twice a week I have an adult out-patient clinic, one by phone and the other face to face. Mild haemophilia patients and a lot of patients with Von Willebrands Disease type 1, I treat by myself and only ask advice when needed. Currently, the paediatrician and I have a combined transition consult, before I take them under my wing. The (moderate) severe, ITP etc are seen alternating between a physician and me. All new diagnosed have a telephone consultation with me to explain the BD in-depth and also talk about when and how to contact our centre.

What’s next for you in your work? What are you looking forward to?

I always try to do what the patients need, sometimes by co-creating a care pathway or it might be writing a well-needed brochure. I try to work in collaboration with the PwBD, see where you can meet and work from there. But I am also preparing towards retirement, in about 4 years.

You will hand over the chair position to Maj during the next congress. How do you feel about that?

I have known Maj for a long time, really enjoy seeing her grow towards the chair position. We worked very closely together during the past 2 years, the committee will be well off with Maj as chair. She will do excellent as will Linda as the new vice-chair. The committee as a whole is very active and wants to do a lot. As the majority of the work has to be done in our time off, we can’t always go as fast as we want.

What makes you concerned or worried?

I will talk about bleeding disorders because there is so much going on in the world, where to begin. I just wished that we could live peacefully and enjoy life. Instead, a lot of people die due to wars and famine and we wreck the planet. At the start of my career in bleeding disorders, we were told during a congress that only 25% of all PwBD received treatment, so 75% did not. To be honest those numbers haven’t changed a lot, that concerns me deeply. On a more personal level, it is the fact that I need to put a picture in here, which I hate.

When you think of the future of the kind of work you do, what gives you a sense of hope?

What I enjoy very much is that the nurses BD community is very close Recently I asked BJ Ramsey from New Zealand a question and got a prompt reply with very useful tips. Let us keep on doing that because it is so important to spread the knowledge we have. 
As a committee, we tried to do that by creating the Toolbox, but most ideas were not written in English and translating them is a lot of extra work. There are a lot of new developments regarding treatment and I have high hopes that the treatment will improve for all bleeding disorders in the near future and for more that the ‘lucky’ 25-30%. May treatment cross all borders, so all or at least more PwBD get the treatment they deserve.