Can it be right that after my husbands massive SAH and stroke in October last year, he has never had a follow up appointment. One was scheduled for this Friday, cancelled and re booked for July 19th, now cancelled again and is now on 4 October, almost a year to the day from his initial collapse. He has not seen a neuro doctor for a proper appointment in all this time, just a couple of visits to check on his meds, whilst in A and E with infections earlier this year. He is still awaiting the operation to replace his skull bone after the craniotomy, and is still waiting for an appointment with the neuro doctor re his seizures.
Do others feel that once you are discharged "that's it" you are on your own, get on with it. Steve has had several other medical issues in this time, kidney stone operation, blood clots in his lungs for which he is on Warfarin, continuing pain in every joint in his body (or so it feels) and continuing pain from the kidney op. He has made very little progress since discharge from hospital in February, his mobility is poor, and he has no real use in his left arm and hand.
Life is so hard, and no one seems to care.
We are hoping to attend our first Headway meeting tomorrow evening in Hull, and really hope to meet some other people who can empathise and share their stories.