I have lost count of the number of hospitals I have been to in the last few years. I have a rare condition called Hereditary Multiple Exostoses, which is a medical condition affecting bone development.
Being at university but having my specialist hospital in Birmingham meant that many of the doctors I needed to see to manage my care had almost no clue how to treat me. At first, I put my trust in medical professionals but after I was referred to see a lung specialist to investigate a bony lump on my chest and a consultant clapped his hands in excitement because I was the first person he'd ever met with my condition... well, I decided to take greater ownership in my care.
1. Know Your Doctors
Find out who is treating you and what for - if there is a lead consultant on your case, get his details too!
I made a note of the consultant's name at the Royal Orthopaedic in Birmingham. I chased the contact details for his personal secretary. It took a while to get but once I had it, I was able to refer any new doctors to my usual team. It sounds a bit cumbersome, but any hospital appointments in the summer that needed treatment in the Autumn - the Royal Berkshire hospital were able to help me having all of the information necessary. It helps communication! I once needed a nerve conductive test that was recommended by Birmingham but carried out in Reading - thanks to this system I'd put in place, everyone managed to get it done.
2. Get a Copy of Everything!
Doctor writing a letter? Test results? Have a copy sent to your address too.
Despite everything you do - mistakes happen. My Reading hospital completed my nerve conductive test but somewhere along the line an error happened and when I'd gone for my follow-up appointment in Birmingham, they didn't have a copy of the nerve report! Almost a wasted journey, but fortunately I had requested one and brought it along. We were able to continue. Urgent medication and treatment was recommended to me on the basis of having that report.
3. Use a Diary!
Keep track of your appointments and minimise disruption.
When having physio and hydrotherapy, I worked which meant my time was limited. I want minimum disruption to my studies, and I quite like having a job. I didn't want to cause difficulty by being regularly away from the office. Just asking for either the first or last appointment in the day meant that I missed minimal hours, or had appointments on days I wasn't studying. I asked for clinic sessions on weekends/outside 9-5. When possible, every one of my hospitals helped. It seems like a small thing, but most people don't realise you can ask! Having everything written down helped me remember, keep track and I could write notes of what I'd need for the next appointment.