i'm so fed up of chasing everything up

[kreamkrackers]

i'm so fed up of having to do all the running around and chase everything up. it really is taking the p!ss. today i've just got a letter from the family fund telling me i will recieve a gift card for comet to buy a washing machine, i have one of these and don't have room for another i asked for help with bedding and clothing as dd has reflux.

then i get a letter from income support telling me my money is going down as i told them i might be getting carers allowance as we're not coping as well financially i wanted to try to get all the benefits we're entitled to but we've still not been told whehter we have been accepted for career's allowance or not so how can they put my money down already?

i also recieved a letter from warrington general hospital telling me that i got the times wrong and dd wasn't left for almost 4 hours she was seen very quickly and was transfered to the children's ward just over an hour after arriving to warrington. this is a big lie, they left her when she was three days old and she was fading quickly and went into multiple organ failure. it was touch and go and i can't get over them leaving us like that. she has a complex cardiac problem but the nurse in a and e thought it was me not bf her correctly which makes my blood boil thinking about it. when the paediatrician finally seen her we were rushed out of the room. we almost lost our dd and they've lied about the times, i just wanted them to accept they made a big mistake and to appologise and promise this won't happen again.

then we've been waiting almost two months now to get dd's blood results back for her immune system check to see whether she can have live vaccines and the doctor that did it has said he has the results but has to double check them with a blood specialist and despite me, my hv and my gp phoning him he still can't give us an answer.

then there's her skin tags which were going to be taken off by a plastic surgeon during a cardiac catheatre proceedure but he wasn't free at the time. she was then deleted off the records. it has taken over a year to get put back on the list and we have to go back to the beginning with it as the plastic surgeon needs to see them before he can do the operation which means another pointless trip to the hospital.

i had to research myself that dd could have help from the portage and also get help from the cdc and i don't think i should have to do all this it should have been offered to me. there must be some mums out there with a child with special needs who doesn't know about the help out there and aren't getting any. i'm glad i've got the help from portage and cdc but somebody else should have helped me get the help from these places.

sorry rant over. i'm just so angry with all the running around i have to do. i shouldn't have to do this i have a busy enough life seeing all the people who help dd never mind chasing everything up.

[anniebear]

No wonder you are so angry

you have enough on yor plate I'm sure without having to chese everyone up

sorry, not much help! but I am listening

xxxx

[misdee]

i had one of these rants last weekend about all the calls i'd be making on the monday, tbh i dont know where i am meant to be accessing help from, and its getting closer to dd2 starting nursery and nothing is in place.

[kreamkrackers]

it's really not fair. we shouldn't be having to do all this running around just because our children have special needs. i think part of it is where i live as my friend who lives in a nearby town and has a child with digeorge syndrome (the same chromosone condition dd has) gets all the help they need and more handed to them on a plate. her little one is doing really well and doesn't need all this extra help and she agrees that it's silly when i have a child that does need all this help and we don't get anything.

[jenk1]

i know how you feel kreamkrackers, i only found out about portage and family fund through MN, and my HV didnt tell me anything like this, also i have just finished with family support, again only found this out off MN, its annoying

[coppertop]

I would phone the Family Fund and tell them that there's been a mix-up. (More chasing-up I know :(). They usually only send/award you the items that you have asked for and may have got your application mixed up with someone else's.

I agree about the lack of advice about portage etc. In our area they are now advertising it well at all the local pre-schools, nurseries and schools but it was very different even a few months ago. I had no idea about portage or what it was until ds1's speech therapist asked if we would like to be referred there for extra help.

I'm so sorry you've got all the other issues to deal with too. It's shocking how little help there is out there. :(

[misdee]

what is portage?

[coppertop]

Portage here is advertised as:

"..a home visiting service to support parents/carers with birth to school age children."

You are assigned your own portage worker who visits you at home to give practical help and advice. Ds2's worker visits every 2 weeks, brings toys and games that will help him with new skills, phones people on our behalf, and generally tries to help with any particular problems we have. She also goes to IEP meetings with us. She's an absolute life-saver IMHO.