Corry van den Hoed-Heerschop MScN, Erasmus Medical Centre Sophia, Rotterdam

I work as a nurse practitioner paediatric oncology and clinical researcher at the Erasmus Medical Centre Sophia Children’s Hospital in Rotterdam. A few months ago, working with one of the paediatric oncologists, I started a project for children with ALL (Acute Lymphoblastic Leukaemia) and their parents. We are trying to improve the care for children and parents through very intensive and efficient cooperation between four shared-care hospitals, where care is shared between the parents, their local hospital, and a paediatric oncology centre. This is a summary of a lecture I gave to parents, explaining how cancer leads them into a different world, and how to cope with the transition from the oncology centre to the shared-care hospital. It will also help professionals to understand the journey parents face and how we can help boost their confidence.

Entering a different world

Your 4-year-old daughter is not feeling well. She has occasional headaches, does not want to eat, complains about pain in her legs, and looks pale. After visiting her general practitioner and a paediatrician, you are advised to consult a paediatric oncologist.

Then, 4 weeks later, just as you are adjusting to this new, unfamiliar world, and know your way around the hospital, the outpatient clinic and the day care centre, you are told your daughter needs to transfer to the shared-care hospital in your own area. Another different world.

When the nurse shows you the glossy brochure with photographs of the sharedcare hospital, the paediatrician, the nurses and the play-therapist, it increases your confidence, especially when she gives you clear information about the shared-care hospital in a very enthusiastic way. She assures you that cooperation between a paediatric oncology centre and a shared-care hospital is a common policy in the treatment of children with ALL. It lets parents take care of their child at home, while staff at your local hospital are informed about your child’s disease and treatment, and can call on the paediatric oncology centre if they need more information or backup. But how will your child react to the new doctors and nurses? Are they all just as child friendly as the staff in the paediatric oncology centre? Is the nutritionist’s assistant in the shared-care hospital just as kind, and is she serving the food your child prefers?

And what about the lack of specialist expertise? How many children per year do they treat? Is your daughter the first one in this protocol? Will they give your daughter the special attention she needs when her Port-a-Cath is accessed? Do they have the same anti-emetics? Do they administer the chemo in the same syringe or infusion bag? Do they know enough about the side effects of the chemo?

It gives you confidence when the nurses at the paediatric oncology centre put all the information about your daughter in a transfer letter and go through it with you. They tell the nurses and doctors at the shared-care hospital about the special way your daughter’s Port-a-Cath needs to be accessed.

The new hospital tells you that they use a different anti-emetic: the Vincristine is delivered by the pharmacist in an infusion bag of 50 ml instead of a 20 ml syringe with 15 ml volume, as it was in the paediatric care centre. It’s good to know this in advance, because then you won’t assume the difference is because of a lack of expertise. No — it’s just another way of doing things.

The nurse tells you that every 8 weeks there is a meeting between staff from the paediatric oncology centre and the sharedcare hospital. Every 3 months there is a training course organised by the paediatric oncology centre for the nurses of the shared-care hospital. All this information helps to give you confidence.

Tell the doctors and nurses in the paediatric oncology centre what the transition from their hospital to the shared-care hospital means for you, your daughter and your family. Everybody needs to be aware of the big transitions your family is making.

For all the professionals in shared-care: I hope you will be challenged by this presentation to make shared-care the best care for every child and parent.