When you live with an Inherited Metabolic Disorder, big changes such as a move to a new school or town can seem daunting. Here, Rhian shares how she moved to Sweden whilst living with MCADD.
“During the summer of 2017, I got my driving licence, graduated with my bachelor’s degree and took a one-way flight to my new home in Sweden. I had discussed my move with my doctor in Wales during our last two appointments, including when and where I was going. I brought up the concern that I wasn’t sure how to organise a new doctor in Sweden but had been trying to arrange it. Within two months into the move, I received a letter from the local hospital informing me that an appointment had been made for me with a doctor. I didn’t make any contact with the local hospitals, instead my doctor in Wales did all of this for me. He contacted them and arranged the entire thing and shared the appropriate information. He helped ensure that one of my prime concerns was covered. For that, I am very thankful. Navigating a new country with what feels like a million pieces of paperwork to be submitted can be fairly overwhelming. Knowing that the medical side was all being cared for allowed me to move feeling safe and comforted that I would shortly have a point of contact locally. Not only that, but he assured me that I would always be able to contact him whenever I am in the UK.
In Wales, I never paid for medication (carnitine) or appointments. Conversely in Sweden, I was aware that I would need to pay. What I wasn’t aware of was the price. For about one month’s worth of medication, it costs me a little over £90. My prescription at the time was a total of two months, therefore having to fork out over £180 at a single time. Appreciatively, there is a “high cost protection scheme” in place once you spend about 2300SEK (roughly £190). Frustratingly, my total cost comes up short by a few pennies to reach this sum, but by the second collection, I had exceeded this sum. Any medication after this for the next 12 months is totally free. For example, if you fall sick and require, say, antibiotics, these are also free.
Things are very relaxed here, or at least from my own experience. Whenever I need to renew my prescription, I just send a text to my doctor and it gets sorted. At first, things can take a little bit of time. Whenever I visit a pharmacy for the first time, the pharmacy needs to apply for a licence to supply carnitine. I haven’t yet visited a pharmacy that prior to my visit has had this. It doesn’t take long to arrange, perhaps one to two working days. Ordering in the medication can however take four to six weeks depending on the time of year. After this, I just send a text to them with my request. Normally, there is a rule that you can only request your next prescription within a smaller time frame, but the pharmacists are aware that it can in some situations, such as over Christmas, take up to six weeks. They let me order early and, again, I just do this over text or a phone call. They then either text or call me when it is ready to be collected.
Without this help, I would have had to have re-gone through genetic testing. The waiting list for this is approximately eight to nine months. But thanks to everything being arranged through communicating my move with my doctor, I have been allowed to continue life here as normal without concern over my health and wellbeing.”
Thank you so much to Rhian for sharing your story and we hope you’re loving life in Sweden!
If you would like any advice on relocating with your condition, please contact us on firstname.lastname@example.org or 0845 241 2173.
If you would like to share your story to help raise awareness of your condition, please contact Maggie on email@example.com or 0845 241 2173.