DLA sleep disorders

Oldernotwiser

Emma1973 wrote: »

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Theres nothing to lose by filling in the form, remember the golden rule of all welfare advisers though, fill it in regarding your worse days, the one when you have the greatest care needs!

That is truly appalling advice; does the organisation you work for know that this is what you say to clients?

Indie_Kid

Emma1973 wrote: »

Having your condition controlled does not mean you are no longer entitled to DLA, having all the adaptions and aids does not mean you are not entitled to DLA. If, for example somebody cant get up and down the stairs, or in and out of the bath without assistance or supervision, the DLA isnt stopped when they get a stair so they can get upstairs by themselves, or grab rails in the bath. Its about care needs not unmet care needs.

I agree. I have always been told "mention aids you use; but explain why you either need help with using them or the limitations of them."

I agree with dmg - that is fraud. Mine has always been filled in on average day; (or week) but I will explain how often I have better and worse days adn explain how often these are.

skipsmum

bambammy wrote: »

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.

If this is bad enough to be a reason for DLA I think you would also have to give up your driving license.

bambammy

I never made my post more clearer,sorry. The hosptial, neurologist, doctor, occupational therapist, physiotherapist and the TJM guy are all NHS. There's desputes between it being idiopathic hypersolmnolence and narcolepsy without cataplexy. Political in my opinion. USA classifies narcolepsy without cataplexy. Not sure UK does. Sleep disorders at the best of times are under political debate. Scottish parliment recently debated clarifying CFS'Syndromes. Surprisingly the document stated an urgency to push it forward before the next election.

The specialist who did my blood to establish allergies and other such like etc, is a private doctor, previously NHS trained.

I do not need to hand in my drivers license because I don't experience
cataplexy. http://www.narcolepsy.org.uk/narcolepsy/cataplexy.html

We're moving house in 3 months to a cottage, as I get older, it gets worse, and because my family can't be here 24/7 to assist me upstairs/or bodily carry me to the toilet and other required stuff on my worst days.

Anyways, i'm not going to bother applying. I have rented out my house and have an income from that, that will assist.

bambammy

I have tried. After disputing my B12 injection, malabsorption and other such likes. I was advised to refrain from all supplements for 3 months, and they retested.


~I also approached the private specialist for a test to confirm. Who used the http://www.biolab.co.uk/ The NHS won't supply this treatment because of the policies and political debates regarding the need for treatment relating to symptoms. Where there's rep of the same medication, it's to offer a choice of what one to buy.

Price Enough for
BioCare multivitamins/minerals x 90 capsules (negligible amounts of minerals) @ £18.26 3 months
Igennus VegEPA 60 x 500mg caps (contains fish oil) OR @ £10.93 dose: 8 a day for 3 months
BioCare Essential Fatty Acids caps vegan 120 caps @ £14.38 2 months
BioCare magnesium ascorbate (neutral form of vitamin C) 0.5grams x 180 @ £20.70 45 days
Ascorbic Acid powder (acid form of vitamin C) 500 grams @ £25.00 8 months
(clearly this is far less expensive, but some people do not tolerate the acid form)
Vitamin Research Vitamin D3 1,000i.u 250 caps @ £12.94 4 months
Vitamin D concentrated powder 100g @ £8.97 100 days
Magic Minerals 405gms @ £18.40 approx. 80 days
Solution for Sensitive Stomachs 100g @ £13.80 3 months

Bolt on extras for mitochondrial failure:
D-ribose pure powder – 500gms @ £26.45 approx. 6 weeks
Acetyl- L- Carnitine pure powder – 120gms @ £11.50 approx 2 months
Puritan’s Pride Niacinamide (vit B3) - 500mgs x 100 tablets @ £ 5.75 3 months
Healthy Origins Co Q 10 - 100mgs x 60 gelatin capsules @ £12.08 20-60 days depend on dose
*DIY injected magnesium 50ml, lignocaine 20ml, 100 insulin syringes, sharps bin - @ £46.13 100 days
*DIY injected B12 30 ml, 100 insulin syringes and needles, sharps bin - @ £36.58 2 months
*B12 injection 30ml @ £16.10 2 months
* Magnesium sulphate injection 50ml @ £24.50 100 days
*Lignocaine injection 20ml @ £1.15 approx 100 days
Syringes and needles 0.5ml 10 x 10 @ £18.98
Sharps bin 1 litre @ £1.50
Methocobalamin 1mg/ml 30mls @£36.23 2 months
Methocobalamin 5ml/ml 10mls @£39.33 2 months
Shot-O-B12 sublingual spray @£20.71 80 days
*Magnesium Citrate powder 300grams @ £ 9.20 2 - 3 months
*Magnesium Oxide powder 330grams @ £ 5.75 2 - 3 months
*Magnesium Chloride powder 300grams @ £ 9.20 2 - 3 months
BioCare Magnesium EAP2 Capsules 300mg @ £16.68 1-2 months
*Magnesium Sulphate crystals (for nebulising) 60g @ £11.50 2 months

*Chromium drops x 30ml @ £ 9.20 2 months



Bolt on extras for poor antioxidant status

*Zinc drops x 50ml - @ £11.50 over 6 months
*Copper drops x 30ml - @ £ 9.20 8 months
*Manganese drops x 30ml - @ £ 9.20 8 months
*Selenium drops x 50ml - @ £10.93 over 6 months
*(also B12 injections, co Q 10, A L carnitine)
Puritan’s Pride Glutathione 250mg 60 caps @ £14.95 2 months

Action Against Arthritis (and osteoporosis)
Devil’s Claw 2 gms, Glucosamine 2gms, strontium 250mgs,
boron 20mgs, organic silica 420 mg, vitamin D 5,000iu x 420g @ £27.03approx 80 days
AAA capsules 500mg x 300cap @ £27.60 depends on dose
Osteotrace (Arthrotrace ) 90 caps @ £15.28 30 days




Sleep problems

Melatonin (Puritan’s Pride) 3 mg x 120 caps @ £ 5.75 40 –120 days
Nytol one-a-night caps x 16 @ £ 3.51
Nytol herbal 30 tablets @ £ 4.32
*Valerian x 100 @ £ 6.67depends on dose

Gut problems
Kefir sachet x 1 @ £6.00 a life time!
Hyperventilation

Potassium bicarbonate (Sando K) x 100 - @ £11.50 12–25 daysdep on dose
*Zinc drops as above

Invasion wrote: »

OP, the majority of physically disabled people, even when on painkillers/receiving treatment are in pain and still suffering considerably. 3 days functional is a considerable amount compared to many disabled people.

The vitamins etc that you're on.. If you're still having so many problems, is it worth evaluating whether there's any benefit from being on them, and therefore money to be saved? I'm not saying this is the case, just worth checking.

bambammy

Yes, but the thing that sticks in your throat with DLA and issues like depression. Those symptoms can be fabricated. Sleep clinic tests, blood tests and patient history, falling asleep when in labour, proof of the pudding etc can't.

But yes, I get the jist.
My family and friends call me the fire starter, due to forgetfullness and lack of concentration. I've set fire to my kitchen several times. Falling asleep or forgetting I'd switched the frying pan on.

dmg24 wrote: »

.

You mention depression as an example. A person with depression may be on medication, but may still have care needs such as a need for supervision due to history of self harm, inability to safely prepare a meal due to lack of concentration etc.

dmg24

bambammy wrote: »

Yes, but the thing that sticks in your throat with DLA and issues like depression. Those symptoms can be fabricated. Sleep clinic tests, blood tests and patient history, falling asleep when in labour, proof of the pudding etc can't.

But yes, I get the jist.
My family and friends call me the fire starter, due to forgetfullness and lack of concentration. I've set fire to my kitchen several times. Falling asleep or forgetting I'd switched the frying pan on.

The great majority of conditions can be fabricated with the right knowledge.

There will inevitably be fraudulent claimants for all sorts of reasons, but their claims have absolutely nothing to do with your condition. You need to focus on whether you fulfil the criteria, not whether others do or not.

jazabelle

bambammy wrote: »

Yes, but the thing that sticks in your throat with DLA and issues like depression. Those symptoms can be fabricated. Sleep clinic tests, blood tests and patient history, falling asleep when in labour, proof of the pudding etc can't.

But yes, I get the jist.
My family and friends call me the fire starter, due to forgetfullness and lack of concentration. I've set fire to my kitchen several times. Falling asleep or forgetting I'd switched the frying pan on.

I don't quite get this post. You come here asking if you can apply for DLA for your expenditure. People say no, but you can for your care needs. You go on about the fact you can't claim for having an expensive disability, say you do have care needs, then say you will not apply for DLA. Wasn't the whole point of your post asking whether or not you can apply?

If you have care needs - apply for DLA.

If you do not have care needs - stop trying to prove to us how awful your illness is. No one ever said it wasn't, they just said you couldn't claim for expensive illnesses.

If you have a mountain of tests, and have care needs, then just apply already. All they can say is no.

Glyndwr_2

bambammy wrote: »

I do not need to hand in my drivers license because I don't experience cataplexy. http://www.narcolepsy.org.uk/narcolepsy/cataplexy.html

I don't see what relevance the page you quote has. To quote the relevant part of that site "In the UK, a diagnosed narcoleptic is required to declare the condition to the Driver and Vehicle Licensing Agency (DVLA). Failure to do so is a criminal offence punishable by a fine of up to £1000 and will void your insurance cover."

To quote the NHS "If you have been diagnosed with narcolepsy, you will have to inform the DVLA and stop driving immediately."

The DVLA (p10) state "Cease driving on diagnosis..." (their emphasis)

I would strongly suggest that you stop driving immediately and inform the DVLA as required by law.

bambammy

I do have a certain amount of care needs.
From reading posts on MSE, and other advice forums, the care and mobility needs advice as I have read it and been told, is that if you require adaptions, medications, special equipment, ie beds, alternative treatments etc, this DLA money to help with that.
And yes, I would assume that those above would be classed as care needs. I need them to maintain.
My other was elaborating on other such likes I feel my family are burdened with.

Sometimes waffling is part and parcel of the disorder. I'm sorry, if i'm not quite dotting my I's and crossing my T's. I know what I want to say, but putting it across is sometimes a different kettle of fish. But yes, I will consider everyone's advice, thanks.

jazabelle wrote: »

I don't quite get this post. You come here asking if you can apply for DLA for your expenditure. People say no, but you can for your care needs. You go on about the fact you can't claim for having an expensive disability, say you do have care needs, then say you will not apply for DLA. Wasn't the whole point of your post asking whether or not you can apply?

If you have care needs - apply for DLA.

If you do not have care needs - stop trying to prove to us how awful your illness is. No one ever said it wasn't, they just said you couldn't claim for expensive illnesses.

If you have a mountain of tests, and have care needs, then just apply already. All they can say is no.