DLA for long-term illness?

[WickWackThurso]

Hi, looking for experiences of applying for DLA for chronic illness please. DD2 has a long-term lung condition that fluctuates in terms how how unwell she is outwardly, (but scans have shown long term issues that will not resolve in the near future) and how much treatment she needs, but at her most well she still requires 1 x 30 min physio and medication sessions/day plus other meds which she resists daily and x3/weekly. At her most unwell she is hospitalised (at least every 3 months) and needs 3x30 min neb and physio sessions and even more meds.

Her consultant and physio have reiterated how vital to her long term health and to maximise her lung capacity etc that she should be very active when well enough and advised swimming regularly and structured movement like baby gym - which we now go to, but it is all very expensive! Plus, she has orthotic boots and inserts due to gait issues and venu garum, so needs a lot of guiding through activites as she trips and falls a lot. So, I have been looking into DLA to help us out a bit.

She is only 18 months, so obviously needs a lot of care regardless, but her condition is very time consuming and causes a lot of lost sleep etc. Her consultant has predicted that current levels of treatment/admissions are likely into primary school but may get better as she grows.

Has anyone applied for DLA in a similar situation (ie do diabetics qualify?)? Is it worth pursuing? TIA

I claimed for my brittle asthmatic dd when she was small under the advice of her consultant. I found it helpful, I can't remember what elements we qualified, it was 15 years ago now, for but it helped us to buy extra stuff that she needed.

Definitely worth applying but do it with help. Try one of the groups for children with her condition, there might be someone who can help on there first. You need to think of all the worst things, not the best days, and make sure you mention everything that makes her life different from the average child her age. Tbh that part is depressing. We claimed for a few years but then stopped the claim as his condition improved (different, chronic also) so it is not something you have to envisage doing forever for it to be worth applying.

Thank you! Good to hear. I haven't broached this with any of her team - feel almost embarrassed to admit we might need it.

Be prepared to need to appeal a refusal, I agree with everything that mercibucket says, fill in the paperwork from the perspective of her worst days.

Ok, thanks. Think I might try the British Lung Foundation for help & it would be great to find other parents with similar problems regardless. I feel that some of this is only coming with the gradual acceptance that she is different and isn't well, and it's not a one-off/two-off etc

Where it asks for info re feeding etc, do you just write "normal for her age" as that isn't a problem?

Do you need to send supporting evidence - clinic letters etc, or do they contact the GP/consultant/physio directly?

Right, have filled form in & photocopied all recent letters/results & discharge summaries. Fingers crossed!

Thanks to those that warned hpw upsetting it may be - it was a bit of a moment acknowledging just how poorly she has been.

To answer your question, yes children with type 1 diabetes do qualify (though are sometimes initially turned down despite meeting the critetia). My daughter has T1D and has been awarded the higher rate care component as she has care needs way beyond a child without her condition and needs day & night attention.
Your daughter is too young to claim for mobility needs, but should qualify for care needs. Agree that you should get advice on filling in the form.

Thanks Oxy - sorry to hear about your daughter.

We've been successful (I think) as DWP has credited my account! Am so relieved, thanks for all advice.

wickwack - I was on your other thread about dla, I'm so glad your claim was successful.

I just noticed this thread, and thought I'd post, as ds also has problems with his lungs - we do chest physio and have had frequent hospital admissions for chest infections and pneumonia, he is supposed to start having daily erythromycin, but his consultant wants to wait, as he has just finished a month long course of augmentin, after being hospitalised with pneumonia.

If ever you fancy a chat then feel free to pm me, otherwise I am alwaysaround on the sn boards.

I get DLA for a personal long term (lifetime) neuro condition, but my dd2 also got care for 3 years. Due to a (thankfully now resolved) chronic hip condition - she got medium care and lr mobility as though she used a wheelchair, I was receiving HR mobility (cos I used a wheelchair!! For a totally unrelated condition!!). I also get MR care as I need help with washing and dressing and cooking but not overnight usually, though dh does help me to get into the loo at night when there's dim lighting - my conditions means if I can't see then I can't balance - if you put the light out on me, I go down like a tree.

You have to fill the form in for your worst day! I spend 2 days a month in hospital on an IV drip. I get progressively better for 2 weeks after, then it deteriorates again.