DLA change of circumstances refused :-(

emmafifema

Hi there,

I have been on DLA hrm/Lrc for almost 2 years. I have Spondylolisthesis and stenosis of the spine, had a spinal decompression and fusion and have been left in great pain which has now been diagnosed as Fibromyalgia.

I applied for a change of circumstance to the DLA as my care needs increased in January last year but my surgeon just kept telling me and leading me to believe that I would get better in time so I did not apply back then....I guess I was just hoping he was right and I would be ok soon.

As I have now been diagnosed with the Fibro, the rheumatologist has told me I will have this for life and I will not get better as I have it quite severely. SO, I applied for the change of circumstance declaring my care needs are much greater and I just had a letter back saying they are not raising it at all.

They have said in the letter that I do need more care but not enough for them to give me more. I basically can't do anything for myself as if I do I suffer the consequences. My mother does everything for me, from ironing, house cleaning to changing my bed sheets, doing my hair, helping me shower, helping me to the toilet at night, helping me when I fall, helping me with toileting during the day, cooking for me, helping me navigate the stairs to my flat many times a day etc etc.

Apparently this only warrants LRC....I need some advice and help on what to do??


Feeling defeated after having to fill in all that form which took ages as I also have major problems with my hands functioning due to the fibro!

Indie_Kid

Housework isn't counted as care for DLA. You may be finding (as I did for years) that you're in between low and mid rate care, which is a right pain.

rogerblack

You can appeal this decision.
Appealing this decision will not mean you change over to PIP.

ukmaggie45

emmafifema wrote: »

They have said in the letter that I do need more care but not enough for them to give me more. I basically can't do anything for myself as if I do I suffer the consequences. My mother does everything for me, from ironing, house cleaning to changing my bed sheets, doing my hair, helping me shower, helping me to the toilet at night, helping me when I fall, helping me with toileting during the day, cooking for me, helping me navigate the stairs to my flat many times a day etc etc.

Apparently this only warrants LRC....I need some advice and help on what to do??

Hi Emma, I don't know enough to help you other than to suggest you join Benefits and Work - there is a charge (think it's something like £18), but the knowledge they have and share seems to me to be worth it. They have really excellent guides to claiming DLA, and there's a forum too where you could ask about what it's best to do next.

I expect someone better able to give you more helpful suggestions will be along here soon too!

Best of luck!

emmafifema

Thanks for the replies, I basically can't do a great deal of anything because of the pain and falling. I have to be supervised and helped to get showered daily, to go to the toilet especially at night as my pain levels increase and I am very disorientated when I wake plus dizzy from all my medications. I wake frequently through the night due to pain, during the day I stumble and fall a lot and I live in a first floor flat so have to have help whenever I go out which again is daily as I have a child - school runs etc. I never used to have any of these care needs just help with cooking but as I say jan last year my needs began to increase and now its worse than ever!

I just can't understand how they can write on the letter that I need help during the day and night with toileting and personal care and then say I only need LRC??

bll78

It's to do with the amount of care, as someone else stated there's a big jump from LRC to MRC and you may be classed as falling in the middle, it's hard to know without more details.
The requirement for night care is about needing support, waking up in pain will not qualify for this. I will dig out the daytime rules and come back and post for you.

EDIT - According to this document http://jac.judiciary.gov.uk/static/documents/00420_roleplay_dla_aa_guide.pdf
For middle rate you need to have :-
frequent attention for bodily functions in the day
OR continual supervision through the day
(You cannot combine bits of the two daytime requirements to make a claim, you have to meet one or other requirement in full)
OR
You need frequent support at night in relation to bodily functions
OR
You need someone to watch over you for prolonged periods or at frequent intervals to avoid danger

Although you have undoubtedly have more needs now, from what you've said thus far (accepting there may be more you haven't mentioned), there's nothing that obviously meets these indicators except maybe the help to the toilet . Although if it's physical help with walking they may question why you do not use a bed pan, catheter and then you wouldn't need help (I was asked this question).

It is worth bearing in mind PIP when it's out in your area is different and some people do appear to gain from these requirements

kurgon

From what you have described I would query the diagnosis of fibromyalgia to be honest. You don't appear to meet the diagnostic criteria bearing in mind that your pain should be explainable from other areas.
It may be that you are not receiving the correct treatment

nannytone_2

it took me 18 months and 3 attempts to get middle rate care.
i had never appealed or even asked for a reconsideration as i had no addition evidence to provide as i receive no treatment for my consition ( there is no treatment available0
the last time i applied, they made a right dogs dinner of the process.
first telling me that i had been refused, then that no decision had been made ( every week for 5 weeks ... so outside of the appeal timeframe)

luckily i was put through to a DM who really thought the claim had been dealt with poorly.
he said to send in anything and everything i could think of that may help, and that he would look at the claim again.
all i could find to send was photographs that my PA had been taking of my cuts and bruises from where i walk into things or trip over things, burns etc.
the DM phoned a week later to tell me that both care and mobility had been raised/
so id suggest keeping a photographic record of any injuries you may sustain as thats whay seemed to sway the DM that reconsidered my claim

emmafifema

I have had numerous tests to rule out other things before being sent to a rheumatologist, at my appointment he did a thorough physical examination which resulted in me in tears due to the pain it caused and he then told me I had pain in nearly all tender points of fibromyalgia hence the diagnosis.

Danni

When I asked for a reconsideration for my mobility needs (from lower to higher as I could no longer walk at all) they automatically declined it. When I appealed they checked more thoroughly, sent a doctor out and stuff, and it was awarded without having to go to tribunal.

I'd appeal it. In the meantime, collect evidence of your care needs (a diary is a good idea- every time you need help, note it down and how long it takes for a week or two and then submit it). It's also worth considering reasons why you need help even with small adaptations- for me when I last applied I needed help to safely get on and off a toilet/commode, and using a bedpan is undignified if you can manage alternatives (and if you're dizzy you might still need help with cleaning up and stuff afterwards).

Good luck.

speedyturtle

First of all i am really sorry to hear about you emma and what you are going through. Another thing is that you are not the only one in this situation. A friend of mine has got Spondylolisthesis in his back and its so bad that the poor guy has lost around 3 inches in height. He was refused the two times and had to take his case for appeal hearing which he won and was only awarded Low care and high mobility even though he need care through out the day.On 3 occasions he couldnt even take himself out of bed to go to toilet. Second is my wife who has got fibromyalgia and suffers with various illnesses got rejected by for the DLA twice. The problem with dwp is that we are all numbers and if they keep rejecting than alot of them would not go through the hassle and there numbers would go down.

The first thing you need to do is pick yourself up and please dont feel defeated. I dont know if you filled the forms yourself or got proper help from CAB or any other organisation. If you filled them yourself than i would suggest that you involve someone from CAB with fillng the forms up or atleast involve them in the appeal process. If you are on the right and know that you deserve it than please dont let it go and fight till the end(I am sure you will). I remember my wife was feeling the same way as you are right now but as i knew she deserved it, i fought till she got what she deserved and you would have to do the same. Takecare and best of luck.


SPEEDY
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