In my opinion turning up to the hospital and letting yourself be swept along by the system is a recipe for disaster. Rightly or wrongly there are a lot of steps which can make things a lot more comfortable and effective.
Advocacy
This is without doubt the most important piece of advice I can give you. If you are too unwell or unable to advocate effectively for yourself then you need to have someone to advocate for you. The system is flawed and unfortunately the “squeaky wheel” gets the best care. Noone will know your needs like your close friends and family, they have to speak up for you and push. It feels very unBritish to make a fuss but this is often the only way to get things done.
Food and supplies
The food is dreadful, I’m sorry but it is. I certainly wasn’t expecting michelin starred grub but I think the dinner being a jacket potato every single night is a joke. You need people to bring you supplies or you might find yourself going crazy.
Be ready for a calm but firm fight
You unfortunately need to psychologically prepare yourself to push and fight for what you need. It’s almost unavoidable. Us AD suffered will be very used to that.
Doctors appointments
The doctors always come round outside of visiting hours, if you’re family, in my opinion, ignore the visiting hours and make sure you’re there for these appointments. Have your questions prepared as you never really know when they’re going to show up.
Notes
Write notes of everything; medication times, questions for the doctors etc.
Don’t take the health care providers word as gospel
We often can feel uncomfortable challenging the professionals however, as in every industry, the professional can regularly get things wrong. This happened multiple times throughout my stay; wrong medications, incorrect information, having a necessary surgery cancelled, so be prepared to challenge the medical advice.
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