In the past weeks Sam has had four appointments rescheduled or cancelled. In one case word of the cancellation was conveyed upon arrival at the hospital. In addition Sam is waiting for a review for his wheelchair as it has become uncomfortable and is no longer meeting his physical needs.
Progressive diseases don’t wait for appointments, they don’t slow down or recognise that the system is not working.
Sam starts secondary school on August 21st, his uniform, text books, pens and pencils were bought in June. But he is waiting on splints to help him stand and a wheelchair that suits his needs. It would be nice to look forward to this special day and to celebrate such an important transition rather than to wait in expectation and frustration for appointments. How sad.