do i have to take a days holiday for childs hospital visits?

stolt

space_rider wrote: »

Stolt, forgot to say you need to claim for DLA as your daughter has more needs and needs more help than a "normal" child her age. My daughter with the vasculitis gets high rate mobility as she can't walk far without pain.

My other daughter was assessed by the occupational health department at the hospital and she has the mclaren major disabled childs buggy provided by them.

Thanks for the tip, something we need to look into as so far we havent done anything.

space_rider

stolt wrote: »

Thanks for the tip, something we need to look into as so far we havent done anything.

You should. When I first got the form for DLA, I almost didn't bother as writing things down made me realise how bad things were for my daughter. She's had it since she was 8 months. With my other daughter I had to reduce my hours to take her and pick her up from school as she couldn't walk far. Getting the DLA meant she could get a taxi. They also paid for driving lessons and she now has a car on mobility. She is now 17 and had the mobility problems at 16.

stolt

space_rider wrote: »

You should. When I first got the form for DLA, I almost didn't bother as writing things down made me realise how bad things were for my daughter. She's had it since she was 8 months. With my other daughter I had to reduce my hours to take her and pick her up from school as she couldn't walk far. Getting the DLA meant she could get a taxi. They also paid for driving lessons and she now has a car on mobility. She is now 17 and had the mobility problems at 16.

thanks, some times i thik i;m wasting peoples time as she can walk but obviously not as everyone else can, then i feel bad because i should be doing all this for her rather than letting her try to get by. Do you download a form or pone your local council?

thanks

Wicked_witch

You can fill in the form online via the dwp website, it lets you save what you write so you don't have to do it all in one go. The important thing is to keep reiterating what the problems are in each question and specifically state why your daughter can't do certain things ie 'DD cannot do X because of Y aspect of her condition which causes her pain/ tires her/ etc', not just 'DD cannot do X'. You need to repeat yourself over and over again, don't assume that if you say something once the decision maker will realise it is true for every question. I can't stress enough how important that is! (Finally got middle rate care for my husband using this advice after several previous tries).

It is very depressing I'm afraid, as you should answer each question as things are on her worst days and it can be very stressful and emotional to keep writing down all these worst case scenarios. I am sure there are places you can contact where people can help you fill it in, but can't offer any advice there as I did it all myself. I wish you the best.

space_rider

Wicked_witch wrote: »

You can fill in the form online via the dwp website, it lets you save what you write so you don't have to do it all in one go. The important thing is to keep reiterating what the problems are in each question and specifically state why your daughter can't do certain things ie 'DD cannot do X because of Y aspect of her condition which causes her pain/ tires her/ etc', not just 'DD cannot do X'. You need to repeat yourself over and over again, don't assume that if you say something once the decision maker will realise it is true for every question. I can't stress enough how important that is! (Finally got middle rate care for my husband using this advice after several previous tries).

It is very depressing I'm afraid, as you should answer each question as things are on her worst days and it can be very stressful and emotional to keep writing down all these worst case scenarios. I am sure there are places you can contact where people can help you fill it in, but can't offer any advice there as I did it all myself. I wish you the best.

Also don`t forget about the medication, and put how long it takes you to give it to her, include all of them including the pain relief. If she is on the injection methotextrate don`t forget to put down the steps you have to take to make sure you don`t contaminate yourself. My daughter even took pain relief through the night, don`t forget to detail that if it is the case and if she wakes up in pain. My daughter often had to get out of bed and move around a bit before she was able to get back into bed. Also be specific in descibing things, don`t just assume they know what you are talking about. My daughter has a specialist rheumatology nurse, I named her as a professional person together with my daughters rheumatologist. Most important thing is not to rush. If you ring the DLA number tomorrow and ask for the form your claim will be backdated to that date if you are successful. This is the number Telephone: 0800 88 22 00

kingfisherblue

You should not write about how things are on her worst days - that would be implying that your daughter is like that all the time. What you should do is state 'Usually...' and 'On her worst days...'

It is good to compare your child to another of the same age. For example, 'X cannot walk from the car to the supermarket without feeling pain in her leg joints, whereas other children of the same age can easily walk the distance from the parent and child parking spaces without pain'.

Your council or hospital can put you in touch with Welfare Rights officers, or you can make an appointment at CAB for help with the form.

Once your daughter receives DLA, you might be able to get a blue badge (if she gets higher rate mobility - still worth applying even if she doesn't). In some areas and hospitals, parking is free with a blue badge.

stolt

thanks once again for all the advice, especially space rider. ive made a note to call tomorrow and get the ball rolling. I think because we are in the middle of it you forget until you see another child running around as i say shes three and didnt walk at all when we were out today and i carried her around the town centre only dawned on me how much she didnt walk this afternoon once i see a little boy about the same age running around in the coffee shop.

Wicked_witch

I was told by the DWP and RNIB to fill it in in that way. Of course, my husband's condition does not have 'better days' so it wasn't that relevant, but I am sure someone who knows for definite will be along in time.

stolt, this is an excellent guide http://ms-people.com/forum/index.php?act=attach&type=post&id=529