Hello,

I share your sense of distress and frustration. My mum was diagnosed on the 3rd August ,mum was expecting to hear that she would need her gallbladder removed but was shocked to learn that her CT scan was highly unusual and due to the rarity of her condition  she would require extensive surgery/treatment in Basingstoke, England(We live in Scotland).Mum didn't have questions to ask as she was not expecting her CT results to show anything unusual. Mum was not informed of what to do next, how long to expect to wait to hear from anybody ,who to contact… The following day mum and dad used their initiative and popped by the local Maggie Centre-the Maggie staff were very welcoming and redirected my parents by phoning the local MacMillan Centre to let them know my parents would be on their way to make contact regarding some initial support and advice .On arrival at the MacMillan Centre, my parents introduced themselves but were shocked by the response they received; in an abrupt and rude tone they were asked-'Well then, what are you doing here?'(My parents offered a brief explanation regarding the shocking news and having to go to England for surgery)'Well, Why are you here then?'(To get some advice and information)'You can come back when you know when you are going for surgery, get in touch when you know more and we can give you help then’…Surely this should have been handled in a more sensitive manner, my parents felt like they were being treated like ’idiots’, they left feeling dejected, more isolated and upset. Mum does not want to contact MacMillan again.