Hi
Never posted on this section usually on the special needs one. Give you an outline of the predicament first:
We have a daughter who was born in Dec 99 and has severe congenital heart disease. We were always told that she would follow a 3 stage surgery plan, go on into her late teens/early 20' and then require a heart transplant.
Well things have changed. We were told a fortnight ago that there is no further treatment for her. She had 2 of the 3 stages of open heart surgery, but her heart is now failing and our local cardiac centre can do no more. She is at the moment being referred to Great Ormond Street for what will be the end of her treatment.
My husband has taken the decision that he now doesn't want to be at work (he works 6am-6pm Mon-Fri so he doesn't see much of the children), isn't coping and went to see the Dr on Monday because he feels he will always regret not being there with her at the end. I also need the help with her as she will soon be on constant oxygen and we have 2 other children to look after. The Dr wanted him to give up work anyway to become a joint carer with myself. Especially seeing that no one knows how much longer we will have with our daughter - crystal ball would be good lol! The Income Support People have said that all they need from our GP is a letter to say that he has had to give up work to become Joint Carer blah blah blah.
Now here is the problem. He has always worked and we have found over the last 6 years that we have been having trouble making ends meet with the endless hospital admissions etc - daughter has had 48 hospital appointments so far this year. Employer has always let him have the time off - reluctantly I must add - but it has always been unpaid - thus us getting into debt as like everyone we have bills to pay, a week with no wage is not a nice prospect for anyone, let alone spent in hospital with a sick child. Therefore we have had to take loans to make sure the bills are covered.
Both of the companies that provide the payment protection have agreed that he can claim. On reading the forms today though, they ask if this was a pre-existing medical condition which indeed it was, but it was never, ever supposed to turn to terminal before her 6th birthday, nobody ever expected this.
What do you think I should do? Should I write a letter stating that she was always expected to reach her late teens/early 20's and that this was news that no one expected to hear and get the GP to substantiate it too when we send the forms back?
All advice greatly received. It's just more stress in an incredibly stressful world. Sorry for the long post!