Care Assessment It’s harder than we thought to post to the blog on a regular basis. The main reason being that our lives are so busy. The posts: ‘On vacation’, ‘First days at therapy group’, ‘Quitting my job’ and ‘Recurring ear infections’ are all still in the works and will hopefully still get posted.

But for now a post about something that worries us. And makes us nervous. This week an evaluation takes place about whether Vera and our family are still entitled to home care and if so; to how many hours a week?
Every year the CIZ (Centrum Indicatiestelling Zorg, the Dutch institution that determines how many hours of care you are eligible for according to the AWBZ, the general law on exceptional medical expenses) makes their assessment. They assess whether Vera is entitled to home care according to the latest rules of the general law on exceptional medical expenses, as drawn up by the Ministry. Our need for care is drawn up by us together with the head nurse of the home care team and submitted as a request. For this we list all the care that’s needed for Vera at home and how much time and effort this takes. We also list the number of hospital visits and therapy sessions. Which shocks even us sometimes, see our last post.

Nurse from the home care team rinses Vera’s pulmonary artery catheter.

 One of the reasons Vera needs a lot of care is the fact that she wakes up between 4 to 10 times at night. Every night. And the fact that she needs extra personal care for instance.

On a regular basis the nurse flushes Vera’s PAC (pulmonary artery catheter) with special needles and heparin, replaces her Mic-key feeding tube in her stomach and performs other similar medical procedures. Because of all these care needs we receive care at home from the Children’s Home Care Team. The home care team helps us enormously by taking over part of the care for Vera, by performing medical procedures that we would otherwise have to go to the hospital for and also to help determine when Vera requires the doctor’s attention. At the moment a nurse comes to our house 3 nights a week. She cares for Vera downstairs in the living room and takes over the last and first round of medication and food for us. That way we can sleep through the night in order to regain our energy and be ready for the next day.

Besides the night care we also have care during part of a day which we use to go do something fun with our older daughter or for a rare evening out together. This keeps us afloat. We are very happy with the care we receive that allows us to live somewhat normal lives. And we hope that we won’t always need it, but it will be needed in the early years when still so much about Vera is unclear and being examined. Of course you don’t receive this care at home easily and each year a new evaluation takes place. And that’s why we submitted a new request for care. The processing time of this request takes 6 weeks, but in the mean time you can expect home visits or phone calls with additional questions to check whether the request is indeed valid. This week it’s our turn.

And yesterday I received 4 phone calls, our home care nurse was called and our paediatrician at the Children’s Hospital was contacted as well. With lots of follow-up questions (how many minutes does it take to replace the Mic-Key? On average how often does she spit up in a week?), they check whether all information is correct and keep pushing with questions about whether there really is a need for external care. We know this is necessary but we are in a very vulnerable position. Not just because you have to tell them everything about your daughter they ask about, but because you are scared to death that they will take away the care you so desperately need and that there is not much you can do about it.

Our case is there, the treatment officer recognises it’s a complex file but also says that a relatively small amount of medical procedures is being done by the home care nurses. And that further discussion will have to take place behind closed doors to determine what is possible within the new rules. How we will get through the nights without the home care nurses she didn’t know either, but she could imagine that it would be hard to keep up without help. But the treatment officer doesn’t have final say of course. Slightly desperate we think about what the alternatives would be, but we quickly push those thoughts away. First let’s wait and see. They are literally telling us that it is questionable whether we will still have care at all and if so, how many hours of children’s home care. Because Vera is not hooked up to a monitor at home (with oxygen or for heart monitoring even though she does have a narrow airway and is a heart patient) and if that is the case, home care may not be necessary according to the latest rules of the general law on exceptional medical expenses.

Welcome to healthcare in The Netherlands in 2014. ;-(
This will be nerve wrecking until we get the final decision. We hope our paediatrician will put in a good word for us. We don’t even want to think about what life would be like without Children’s Home Care. 

Here’s hoping for the best!