Help at home
Ensure you ask your Social Worker, Community Peadiatric Nurse and Health Visitor what help is available out there and what you are entittled to. Dont be afraid to ask for what you think is a reasonable number of set hours respite or help in the home. If you do not ask they will simply not give. Services cost the trust money and they are not going to offer you them.
It all depends on your childs condition, what help will be available to you.
We were so over whelmed by the premature birth of our son, and we were that eagar to get him home we never thought to ask about help when we got home. So off we went from the hospital on our own and no help offered. We finally realised that with the frequent suctioning during the day and night we were just so tired and started sourcing information on what was available out there.
The trust advised that the service was simply not available, that they have nothing set in place for trachy children. this was not good enough. We set about finding info via The Childrens Law Centre, Ombudsman, via internet chatting tho other parents who have been in the dame position and our local councilors. We wrote numerous letters to the trust explaining we were not happy with what little help we were getting.
Ben was discharged from hospital 3 weeks beofre he was made aware off to the social services.
They started giving us bits here and bits there which wasnt good enough.
We were also referred to the Northern Ireland Childrens Hospice, were Ben was accepted for 1 year then will be reviewed.
We also found out about The Red Cross, a charity organisation who would cater in looking after Ben a few mornings a week with the necessary training required of course. We have since been advised that with Ben having MRSA, this service is no longer available to us. I do understand this as there are a lot of vunerable children attend The red cross, and would never forgive my self if they contracted MRSA and took ill again. Its a shame the person who infected Ben never though this aswell..........
We have tried numerous daycares and play schools but they simply do not have the insurance to take him on.
