DLA sleep disorders

bambammy

Sleep disorders are not, as far as I'm aware classed as a disability ?
I have a application form there, stamp dated Jan 09'. Haven't filled it in.
Each time I find the energy to face it, I can't. It just mentally drains energy the life from me.

I've had a sleep study June 08' which also confirms my sleepiness. Reaching REM sleep in 6 minutes each test. Recent response from the hospital stating I will now been given x3 200 mg of modafinal daily, with option of taking x4 tablets a day as I fluctuate between 75% and 90% pending sleep walking/sleep talking. Doctor stated, I will be on these for life.

I've recently had test done with a private specialist, ( no longer GP registered, but NHS trained ) which blood results affirms how disabled I am. 75% scale. http://notdoneliving.net/foothold/scales/charrles-shepherds-cfs-disability-scale

To maintain, I've quite a large financial outlay. Substantial and Various minerals and vitamins taken x3 daily. Organic diet, also allergy trial and errors diets to asses elimination of symptoms, nose strips to aid breathing throughout the night. Melatonin. The gym. These are continuous and ongoing to maintain.

Other outlays - Locks on my doors and windows for sleep walking. Expensive new bed, linen, pillows, electric bed blanket, air purifier, an infrared sauna, gum sheild, lower mouth plate - aids TJM. It's a part time job in itself maintaining wake times and relieving symptoms.

I've never received DLA before, never realised when working I would be entitled. Plus earnings as well, I thought this would be taken into consideration.

Invasion

DLA is not means tested, and you can work and be entitled.

Can you cook a meal? Or do you need help bathing/washing/drying yourself? Those are the minimum requirements for the care component of DLA.. Amounting to about an hour a day.

Do you need supervision when out in unfamiliar places to keep you safe? That's the requirement for lower rate mobility, and higher rate mobility requires you to be unable to walk 50 metres or less before pain/you have to stop.

From the information you've given it doesn't sound as though you would be entitled to DLA, expenditure because of your illness is not taken into account.

You should be able to get melatonin on prescription from a consultant, and if you buy a "season ticket" then you can get unlimited prescriptions for just over £100 a year.

Also, CFS is not just sleep disorders and/or fatigue. It is a complex illness comprising of many many debilitating symptoms, not fatigue alone.

dmg24

I would agree with Invasion, your condition does not really give rise to care or mobility needs.

bambammy

This DLA baffles me every time. So if you can get out of your bed and go to work your entitled ? but your illness isn't taken into account ? this money I spend, to stop being bed ridden ? I thought this is what DLA was all about ? My medical records going back years backs up symptoms including, sleeping threw birth!

I remember taking a nightshift job to earn extra money to pay for alternative treatments to aid being awake, and the big fat plonk I worked with, was receiving DLA for depression and his mother who was the cleaning supervisor for the company got his care allowance.

He spent the £££ on booze. I would like to aid the £££ burden I go threw to stay awake and maintain a small quality of life, part symptom free.

Invasion wrote: »

DLA is not means tested, and you can work and be entitled. This is one reason why I never put the claim in. Thinking well, if I can get out of bed and go to work.....

From the information you've given it doesn't sound as though you would be entitled to DLA, expenditure because of your illness is not taken into account. From reading various posts, topics, I was under the impression that DLA was for those people who would benefit from extra money because their illness affected their quality of life.

You should be able to get melatonin on prescription from a consultant, and if you buy a "season ticket" then you can get unlimited prescriptions for just over £100 a year. What's this season ticket thing and how do I get one, thanks ?

Also, CFS is not just sleep disorders and/or fatigue. It is a complex illness comprising of many many debilitating symptoms, not fatigue alone.

Oh I know it's not fatigue alone! I've been battling with it since 12/13yrs of age, missing out on my of my education. As I get older, it gets worse. The overnight study confirms my sleep, narcolepsy without cataplexy.

The fatigue blood test and scale......I felt I had to take this test, as I became more comatosed needing assistance to be taken upstairs to bed. This test is not available on the NHS.

CFS'Syndromes are symptoms of other underlying issues. Mines being hypoglycemia, helicobacter pylori, B12 defiency anemia , TJM, I could list more....I never listed my everything regarding it my query to if I'd be entitled, because I'd take up a few pages elaborating on everything I go threw with my care needs.

bambammy

Again, I don't understand this ? So i'll stop taking my copious amounts of vitamins and minerals, i'll become bed ridden and then i'll get assistance. I thought the assistance was to make sure that didn't happen?

My children took care of me for years on my worst times, helping me upstairs to bed, or fetching pillows and covers for me to sleep on the couch, and I just struggled on. My partner has now taken over that role. He has to follow me on my sleep walk trips and gently guide me back to bed. Cooking , cleaning, amoungst other things, pending my good/bad days. Educated him on dealing with hyperventillation, anxiety attacks, chest pains, and other stuff. I function like a zombie on a daily basis, with supplements. Without, i'm bone cracking, dead like woman walking putting terrible burdens on my family. The gym and supplements give me a bit better quality of life, but by no means, a miracle, and they don't stop them assisting me.


and

dmg24 wrote: »

I would agree with Invasion, your condition does not really give rise to care or mobility needs.

dmg24

If your condition is controlled, by whatever means, you do not have care needs and therefore you are not entitled to DLA. The great majority of people in receipt of DLA have all the adaptations possible for their condition, but still have care and mobility needs in addition to this.

Interestingly if you are completely bedridden you will not qualify for DLA mobility, because you have no mobility needs.

I was under the impression that DLA was for those people who would benefit from extra money because their illness affected their quality of life.

This is not strictly correct, if you do see this written in a post please refer the author to the Benefits board, where people can clarify the purpose of DLA.

Indie_Kid

bambammy wrote: »

Sleep disorders are not, as far as I'm aware classed as a disability ?

The definition of disability is "a physical or mental impairment which affects one's day to day activities". (walking, washing, speaking, hearing, etc) The name doesn't matter and I do know people who claim DLA but don't have an official diagnosis.

It being classed as a disability is irrelevant. Many people have what is classed as a disability but are not entitled to DLA. (my dad being one of them; as his illness is controlled)

Thinking well, if I can get out of bed and go to work.....

I know loads of people who claim DLA; but can get out of bed and work - they do have care/mobility needs though.

I agree with the others - it doesn't sound as though you do have care/mobility needs.

GlasweJen

Actually i think the OP might be entitled to lower care. I had a case like this at CAS back in the day (did the appeal work and attended the tribunal) and the award was based on the client at the time needing supervised during the night to ensure that they were not a danger to themselves, the DM did not accept that they needed supervised all through the night as the client did sleep and didn't always sleep walk. The middle rate was not given as the claimant was able to look after themselves during the day and required no help with toileting etc at night, simply someone to help them back to bed and ensure they are not injured. Probably still not the answer the OP was hoping for but just wanted to chip in that bit of info.

Oh and no mobility was awarded as they didn't count sleep walking outside as general getting about needs.

bambammy

When I have to pull my car over, park in a car park with cctv and sleep for an hour, for fear of crashing, my head's bopping like the churchill advert dog, and feels like it's seperated from my body....this DLA issue really riles me up. I feel It's not controlled. I'm still in pain, and always need help. I can have 3 good days wake time, part functional, if i'm lucky!. The rest of the week, my family is burdened.

But as my mother keeps telling me....you managed this long without child support from him....you'll manage fine without the DLA.

bambammy

I'm going to be annoying and ask

Why ?

What's me and my family maintaining this illness/disorder any different to someone with depression, diabetes, anxiety and other topics i've read on MSE.

dmg24 wrote: »

I would agree with Invasion, your condition does not really give rise to care or mobility needs.

jazabelle

If you can list care or mobility needs that arise from your condition - go for it. It's no good keep asking people on here, they don't make the decision.

All those conditions you've named could have a lot of care needs - it's now done to you to prove you have care needs arising from your condition.

I do agree there should be a benefit for the expense of having a disability, but there isn't at the moment.