stop the dla takeaway campaign

pipkin71

happy_mom wrote: »

Most people obviously havent had a lengthy stay in hospital with their child.

No, I haven't had a lengthy stay in hosppital with a child, and genuinely feel for anyone who has

I am, however, a disabled adult who has spent time in hospital.

I still maintain that the period DLA is still given for is perfectly adequate, even after reading of the difficulties you faced. My reason is that the DLA is provided for care and mobility needs, which should be provided for by hospital staff.

Hope your daughter is better now, btw

pipkin71

sh1305 wrote: »

had someone to help me get dressed - the latter I need whether I'm in hospital or not.

How come you now need someone to help you get dressed, sh?

Indie_Kid

pipkin71 wrote: »

How come you now need someone to help you get dressed, sh?

It's to do with the pain and limited that I have with my neck and shoulders. At one point, I managed to pull the muscles in my shoulders hanging washing out. Only needed help in the hospital because I'd catch the cannula that I had in.

pipkin71

sh1305 wrote: »

It's to do with the pain and limited that I have with my neck and shoulders. At one point, I managed to pull the muscles in my shoulders hanging washing out. Only needed help in the hospital because I'd catch the cannula that I had in.

Have they offered physio for your neck stiffness?

Are you due a medication review [perhaps make an appointment, if not] so that you can change tablets, meaning you aren't in pain so much? It is a difficult process, but you can hopefully find some medication that eases the chronic pain.

Ouch to pulled muscles. It is awful when you aren't able to manage easy tasks

Indie_Kid

pipkin71 wrote: »

Have they offered physio for your neck stiffness?

Yes. When this all started in 2007, they offered it and it never helped.

Are you due a medication review [perhaps make an appointment, if not] so that you can change tablets, meaning you aren't in pain so much? It is a difficult process, but you can hopefully find some medication that eases the chronic pain.

They took me off naproxen and I'm now going to be having botox injections.

GlasweJen

I didn't think it was cruel when I was left in hospital. The world doesn't revolve around me and there were 4 other children for my parents to think about. Dad had 2 jobs at the time and mum ran a small business from home, when my carers ended she upped the hours as she wasn't caring for me she was able to do this until I came home.

Prinzessilein

I have ASD and one of my problems is that I am an elective mute. My mother goes with me wherever I go. If I was in hospital, then I would not be able to communicate with the doctors and nurses - no matter how well trained they are. I need my mother with me - even though I am an adult.

However I accept that my care/mobility needs would be less whilst in hospital. I would not need to cook or do housework or go shopping for example.

In my case, a reduction, but not cancellation of DLA would perhaps be appropriate. The problem we face is that every single situation is different. For some, their care and mobility needs may be fully met whilst in hospital. For others, they may still need 100% of their DLA.

cyberbob

happy_mom wrote: »

Most people obviously havent had a lengthy stay in hospital with their child

No but I had a lengthy stay with my wife. When we lost DLA after 28 days.

happy_mom wrote: »

all this, one parent had to stay with her whilst the other went home to care for our other child. We were told when she was diagnosed that a parent should be there with her day and night. Even the nurses in the ward admit that they could not cope without the parents, for example these are some of the things we had to do EVERY DAY: 1. administer meds which were left at the end of the bed, collect the water to take the meds. 2. Collect supplies of bed pans and sick bowls and take full ones to be weighed and measured. 3. Prepare food for our children as most children on chemo will not eat the food provided and nurses quite openly admit the food is appalling! 4. Entertain the child as they are bedridden. 5. Change beds as fresh linen was dumped in the room each for the parent to change the bed - this may have needed to be done a few times a day if they were sick!

Where is this ridiculous idea that because it's a child you have to do all these things. You still end up doing these things for adults. When my wife was last in Hospital it was a pain and a struggle and I had to provide a lot of her care because the hospital did not understand her needs. I also lost my carers allowance and there is just me no one else no family to help just me. So I didn't have someone else to fall back on as you seemed to have, but I don't think it's a competition about who has the hardest job.

happy_mom wrote: »

top of this there are increased travel costs, parking, childcare and food costs. In addition to the fact that often 1 parent is a carer because they cant work to provide care - and they still have to eat, pay bills and try and keep a roof over their head for when they are lucky enough to be home and the NHS dont provide this for parents, but they also have their carer's allowance removed. So what do all those who think it is right propose the carers do when benefits are withdrawn?

I'm sorry the same thing happens to adults when they are in hospital. If you lose your CA because of that you can apply for income support.

So please stop this I'm a carer of a child so it;s far harder than looking after an Adult rubbish. It's not a competition.

I unlike you as hard as it was when my wife was in Hospital and we lost our benefits understand that DLA is for her care and that was the reason it was withdrawn. I had the choice as do you when our Caree is in Hospital to leave the care to the Hospital I decided not to as did you, but you could have and if the care wasn't good enough you should have complained. As you have 3 months before the benefit is taken away it's not exactly a shock and gives you plenty of time to prepare for this.

As I said earlier I think carers of children have it good with 3 months leeway. I don't begrudge you this. What I take umberance with is this attitude that Carers of disabled and sick children have it harder than anyone else just because they are children.

Personally if I was you I would keep quiet about the 3 months as it's far more likely it will be removed than extended in these financial times. It also needs to be rememberd no matter what you use DLA payments for they are in fact paid for help with the care of the claimant not for everyday living.

wattdallas

sh1305 wrote: »

How many of you can honestly say that when your child is in hospital, you're giving them the same amount of care that you say you give them on the DLA form?

I can ,and im not the only one.When our daughter had her scoliosis operation we were in hospital for three weeks and we did all her care apart from blood tests and dressings.

Nurses have not got the time the care for a severely disabled child .

Indie_Kid

wattdallas wrote: »

I can ,and im not the only one.When our daughter had her scoliosis operation we were in hospital for three weeks and we did all her care apart from blood tests and dressings.

Nurses have not got the time the care for a severely disabled child .

Surely that depends on when you go into the hospital. I had my operation on new years' eve a few years ago. There was only me on the ward and if I needed help, I would get it there and then.

I have ASD and one of my problems is that I am an elective mute.

Do you not use BSL or makaton? When mum was unable to talk, she just wrote everything down. (she had an operation on her throat - no talking over the weekend and minimal talking for the next week)