F.A.O UK Parents/Carers

Concerns specific to those in the United Kingdom

F.A.O UK Parents/Carers

Postby Zaneleesmith » Sun Feb 20, 2011 9:03 am

Our son Zane has been diagnosed with cavernous angioma, he is 2 years old and 2 months, he has 7 clusters on his left side and 8 clusters on his right side
He has been constanlty ill for over a year now and after a M.R.I they found the 15 clusters, they ain't sure if the clusters are making him ill or if he has CVS,
He has seen a neurosurgeon at addenbrookes in cambidge and have been referered to a peadiatric nurologist, we just waiting for a letter now,
Someone said to us last week, that becuase he is so ill so often (more ill than not-in the last 18 months the longest he went was 5 weeks without being ill............!!) we should try and claim for a carers allowence?? Is this possible? its always hard for my wife to go to work when he is ill, i never thought of this at all whilst all this has been going on, i havent got a clue and its all kinda a blurr still, But can anyone help??
many thanks in advance
Lee - Zanes dad
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Re: F.A.O UK Parents/Carers

Postby tallpaul » Mon Feb 21, 2011 10:05 am

Well as no one else has stepped up to the plate ... according to this page you can claim Carer's Allowance "if you are aged 16 or over and spend at least 35 hours a week caring for a person." and that person should be getting one of the following benefits:

    - Attendance Allowance
    - Disability Living Allowance (at the middle or highest rate for personal care)
    - Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
    - Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension
Attendance Allowance is "a tax-free benefit you may get if you're aged 65 or over" so that doesn't help. He's not got an industrial injury so the third isn't relevant and he's not got a War Disablement Pension so that's writes off the fourth.

However Disability Living Allowance is "a tax-free benefit for children and adults who need help with personal care or have walking difficulties because they are physically or mentally disabled." See here for more on that but that sounds promising.

So it sounds like you actually need to take a step back and look at getting him Disability Living Allowance. If you can get that for him then your wife can then apply for Carer's Allowance on top of that.

However all of this above is based on web browsing. I'd suggest getting advice from professionals. Your surgery might be able to point you in the right direction. Failing that the local Citizen's Advice Bureau will definitely be able to.
Paul Oldham, cavernoma in pons, bled 2002
Webmaster of Cavernoma Alliance UK
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Re: F.A.O UK Parents/Carers

Postby Zaneleesmith » Sun Apr 10, 2011 1:01 pm

Thanks for the reply paul
We applied and as i expected we got rejected as he didn't need enough care, even though he has daily seizures... We have appealed the decision and zanes consultant and written us a letter of support saying he needs personnel one-to-one care....
I must admit i didn't expect to receive anything from this country, i'm only 27 and have worked since i was 13, My wife got sacked from her part-time job having to keep taking him to hospital.......
i have never been out of work and when we need some help back.. nothing...!!!
But thanks for your help, hope your well, we are back at addenbrookes on wednesday afternoon
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Re: F.A.O UK Parents/Carers

Postby Rachel » Thu Apr 05, 2012 9:31 am

I thought with dla if they reject it you can ask them to reconsider and then appeal - also you may be able to apply for a blue badge for when you take your son out?

Also if they sacked your wife - you might want to look into the legislkation as parents are allowed a certain amount of time off for disabled children - and she could possibly make an unfair dismissal claim?
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