I've read through all the posts I missed last night (ds2 woke up closely followed by dd2 and dh was fast asleep downstairs so had a bit of a drama with them both inconsolable).
Thankyou for all the help. I will have a think again today about what may help and speak to caf advisor on Monday and see what else she can help with, I will ask her to speak to gp about transport scheme as I can't seem to get through to anybody.
We are in nw London so not sure if I'm near any of the people who asked, will pm later on when I get a minute. Not that near to central middx hospital but do occasionally get given appts there (bit of a pain as that's always the most expensive taxi fare) but usually we go to the more local hospital which is a bit easier.
The car although expensive was we thought a better option than motability as dh has to drive to work and we didn't want to be using it for the wrong thing. Evenings a nd weekends though it is used solely for dcs and is good as we can fit everything in that we need.
When dd was first ill I wanted dh to give up work, I couldn't cope and wanted him with me as it was too much. We checked and were told that as two of the dcs received higher rate dla we would both be allowed to not work as we would be classed as carers and could get income support etc. it would be easier, dh could drop dcs to school, take us to appts, help with everything, my life would be a huge amount less stressful.
Dh point blank refused to do this he said he has to work for his own sanity and does not want to be around kids all day. He said the dcs need to see somebody going out to work each day or they will think that when they are older they won't have to work ( dh has eds as well and dislocates joints daily) .
Initially he changed his hours from a 7 am start to 9 am and said he would always finish early at 430 pm to get back earlier to help me. He stopped doing this quite soon after, he still gets in for 9 ish but never leaves early and sometimes is still a t work at 630 or 7. This does annoy me as it was it what we had arranged at all and the end of the day is often quite difficult.
Even if dh did agree to give up I do think I would worry as at some point benefits would change and we may be told one of us had to go to work again, at which point dh may have been out of work for a while and could struggle to find another job ( he has no qualifications and works in just one trade) so it could be a problem.