7 year old tube fed child DLA renewal refused :(

relic

skipsmum wrote: »

The OP is a full-time carer of a a severely disabled child. She works 24/7. How is she supposed to supplement her income? I find your post quite patronising given the OPs circumstances.

Well unfortunately it is real advice.

If the state isn't paying you to look after your daughter, then you will have to earn money elsewhere. I'm not saying it's practical, but how can you care for your family and disabled children if you don't have any money?

Bumpmakesfour

relic wrote: »

Well unfortunately it is real advice.

If the state isn't paying you to look after your daughter, then you will have to earn money elsewhere. I'm not saying it's practical, but how can you care for your family and disabled children if you don't have any money?

As I've already stated above we DO have the ability to cover our own essential outgoings without the DLA.The disability payments funded the "extras" and hospital costs not our gas bill or food shopping but if it doesn't get reawarded then we will have to fund that ourselves by cutting back in other areas.Of course it's worrying .. who wouldn't be alarmed at an unexpected loss of hundreds of pounds a month?
There's a huge amount of advice on here with ideas I'd never have thought of with ways to save money and hubby and I have sat down and gone through everywhere we can cut back on.And now the news about the car is a huge relief too.
So,again,concern appreciated but at this present moment in time my main concern is getting my daughter the benefit she qualifies for to make hers and our life that little bit easier.Thanks

relic

Bumpmakesfour wrote: »

As I've already stated above we DO have the ability to cover our own essential outgoings without the DLA.The disability payments funded the "extras" and hospital costs not our gas bill or food shopping but if it doesn't get reawarded then we will have to fund that ourselves by cutting back in other areas.Of course it's worrying .. who wouldn't be alarmed at an unexpected loss of hundreds of pounds a month?
There's a huge amount of advice on here with ideas I'd never have thought of with ways to save money and hubby and I have sat down and gone through everywhere we can cut back on.And now the news about the car is a huge relief too.
So,again,concern appreciated but at this present moment in time my main concern is getting my daughter the benefit she qualifies for to make hers and our life that little bit easier.Thanks

Well then I must be slightly confused, at first you said you could cope, then you couldn't, and now you can cope again! I was just pointing out what would need to happen without the benefits.

I don't know why people are taking my advice as being offensive, i'm just being realistic. I hope that you do get your benefits, so good luck to you.

wattdallas

Bumpmakesfour wrote: »

Is that your daughter in your pic?She is beautiful xx

Yes = shes my brave angel:A

Bumpmakesfour

I didn't take it as offensive We can "cope" with essentials (mortgage,bills,groceries) but will have to cut back and revise things significantly to fund extras/hospital costs etc...that's basically how it stands.Initially I thought the only way we'd manage to keep funding those things WAS for me to return to work but am now feeling more confident we can save tx to the old style board etc.
Apologies if my posts have been somewhat conflicting..I was initially in shock and confused,full of pregnant hormones and upset,then angry and now thanks to the support and advice on here and with my DDs nurses etc feeling more rational.That has unfortunately probably been reflected in my posts but it honestly really has been very stressful

coolesticeking

What annoys me more than anything is this is what DLA was meant to be for, i've had to do the forms myself for DLA and they are draining to say the least and I would call them easy claims that I had to do - I can imangine they takes quite a while to fill out and making sure you put in every last bit of info, include all the forms etc etc etc..

Makes me sad to see it being declined just like this, they know full well from the forms you included that nothing has changed and that simply should be it - renewal complete..

I just hope they overturn this for you ASAP, stop causing you strees and get the money you deserve to care and look after your daugther and to help her make her life easier if it's days out, toys whatever it is to keep her happy!

You don't need all this carp

kazz3105_2

coolesticeking wrote: »

God help you ever getting ill yourself and using tax payers money being a burden yourself by using the NHS.

She loves her kids and you know what, by the way she posts she bloody looks after them 1st class... Take my hat off to Bumpmakesfour.

People have crashes etc after being fit and healthy, are they a burden when they need 24 hour care also?

We are following your posts with interest and astonishment, your daughter obviously needs DLA or why would she have had it originally, they obviously think there is some sort of miraculous cure out there. Good Luck and take no notice of the small minded people on here 99% are good people with plenty of helpful advise and empathy.

Bumpmakesfour

Well after a lot of calling round the lovely people who look after my daughter have been a huge help.We now have a supporting letter from schools SENCO,a very detailed letter going through the entire day/night regime of care from our amazing community nurse,a letter stating not only the conditions but the impact on her mobility from her lovely physio and the dietician called just before school and is writing a letter backing her overnight feeds/intolerances/gastrostomy needs etc.So we will have a little pile of supporting evidence ready by the end of the week to send in by the deadline date of the 27th sept.
Should I add a few days of diary entries with the care or do you think we have enough?
I honestly cannot sing the praises of all the professionals involved in her care enough!They are all very busy people but have happily taken time out to help support us :T Fingers crossed we get the reconsideration without having to appeal now xx

clemmatis

This sounds good, bumpmakesfour! I don't really know about the diary, but I'd suggest you do it.

Bumpmakesfour

clemmatis wrote: »

This sounds good, bumpmakesfour! I don't really know about the diary, but I'd suggest you do it.

Thankyou xx
Guess I'll add the diary,better to have too much than too little