About DLA for people with sickle cell

[Jadesansom]

 Are people with sickle-cell entitled to DLA As my little girl is 9 years old has been told she is no long  in titled to it after only having it a year and a half and obviously her symptoms are still the same? 

[bluebug]

It's not the disease that entitles you to DLA it's the disabilities the disease  causes. 

You need to get help from someone in person to complete the forms otherwise your claim will be automatically rejected so I would contact the sickle cell society on the phone to see if there is someone not far from you, who can help you.

[DMBBMS]

Morning sorry to hear about your situation, from a non-professional perspective I would say go for a tribunal appeal as it seems there is a blanket decision to get many people off DLA, PIP and ESA. On a personal note my mother had no points in her initial assessment but on appeal it was raised to 45 which seems ludicrous but seems to be the state of play within this current government. It can seems a daunting and lengthy process but the good news is if successful you'll also get back paid to when the original decision is made including carers allowance if applicable.

Stay calm and get some advice, citizens advice is a great start and can guide you where needed. 

Don't be afraid or intimidated by the appeal tribunal when you get there either, it's usually in a court setting but has a panel of peers including actual health professionals and representative from the disabled community.

SCA as a disability is a difficult one but I would collate all your child's history of crisis and symptoms with episodes, diary entries and hospitals admissions and treatments would be ideal along with a supporting letter from your doctors clinical lead about her condition and the potential affects she may have.

If you need help try the links below:

benefitsandwork.co.uk/disab...

citizensadvice.org.uk/benef...

[Linda0076]

Hi, 

In reapplying you will need all new medical evidence or any reports that you've kept. Gather all that you have, old and new. If you can get the section on the form marked 'statement from someone who knows you' filled out by an independent professional, such as a school teacher or play-scheme worker or someone non family it may help more than getting a family member or friend, as many do. 

And because Sickle cell can be such a different disease for different people and symptoms come and go it is not obvious that the symptoms are still the same, so you will need to reapply more frequently than say an individual with Down syndrome who's disability is not really variable. You have a time limit on when you can appeal and 'CONTACT A FAMILY' are a really helpful organisation for parents with disabled children that will point you in the right direction for support with these long forms. 

Hopefully they'll re-award.

Goodluck