DLA - how can I be so ill and yet have normal results??

[Scarlett]

Hi all -

I've been considering looking into applying for DLA. I've been ill for about five years, and am a self employed designer working from home. I vary from being able to work 4-5 hours (albeit lying on the sofa!) a day to just 1 hour a day, and recently I've been too unwell to be able to concentrate at all, and haven't been able to work. This is a bit scary, as if I don't work I don't earn money etc...

I've never gone the benefits route before, partly because my condition fluctuates so much, and partly because I like to be independent. Now, with all the scandalous cuts and new rules surrounding disability benefits in the UK, it's even less attractive! But I'm fed up with struggling when theoretically I should be eligible for some help.

I've joined the brilliant Benefits & Work site, and got their guide. I asked the doctor to provide me with copies of all the consultants' letters since I was admitted to hospital in 2008, and each one reads very similar - patient records neurological symptoms, looks to be post viral, central nervous system, but NO evidence. Everything absolutely normal - the only thing slightly unusual that they've mentioned is I have a slightly low white cell count.

It's so demoralising to be feeling so orrible, and have no medical evidence to prove it. I have letters from neurologists and the endocrinologist who eventually diagnosed me with CFS, but if I was at the DLA I would be inclined to suspect I'm looking through the notes of a hypochondriac neurotic!

Is it worth it to go through all the stress of applying for DLA / appealing etc? I just don't know if I'm up to the fight now. I understand of course that everybody's experience is different, but has anyone been through it all and regretted it?

And, as an aside, has anyone else experienced normal results for practically every test?

 

[Esther12]

Hi Scarlett.

If you can avoid putting your time and energy in to jumping through the benefit system's hoops, and instead devote it to something more worthwhile, like your design work, then I would prefer to do that. It could be that this is no longer possible though, in which case you will have to turn to the DSS... which will be a tedious burden an uncertain end.

re testing: Looking back, I had very little, and never saw a neurologist (until a recent visit to a migraine clinic), endochronologist, etc... but I've got no test results which explain my fatigue. I've still been able to receive benefits, but a CFS diagnosis does make things much more difficult.

Good luck with everything... sorry for sounding a bit negative about it all.

 

[Scarlett]

Thanks Esther -

The more I think about it the more averse to the idea of benefits I am - I've managed to be freelance for 5 years and just about stay afloat. I've NEVER been or wanted to be part of the system. The consideration for applying is to take a bit of the stress of cashflow away so I don't HAVE to work on days when I'm really unwell, as stress makes me worse, and keeping on even near the right side of '0' in the bank is a constant struggle. But on the other side, I think deep down a small part of it is based on the need for some kind of recognition - just some sign from the Powers That Be that recognises a chronic condition that is so little understood. I was considered to have MS originally, and that would have meant instant support, and then the diagnosis was changed.

Thanks for your reply about results too - I know I was very lucky to have seen neurologists and endocrinologists; I was scanned and prodded and tested pretty thoroughly thankfully. I think this was just down to circumstance, as I was sent to hospital directly from the GP with a suspected brain tumour or stroke. Although it's awful that we don't have a definitive diagnostic test, I feel a bit more at ease knowing I'm not alone in that. 30 letters from consultants, and no abnormal results! I hasten to add, following my eventual diagnosis in 2010 I have had no support from the medical profession at all.

80% of me refuses to join the benefits system, while 20% of me begrudges the fact that I am actually struggling and in need, and that the chances of me actually getting the help I need are very slight. I think I should just pull mesself together and concentrate on getting well enough to earn some money, hard as it may be. Sorry for the depressing post! I'm just having a difficult week and my blood test results have shown nothing out of the ordinary that I could have attempted to treat with supplements etc.

Thanks for your help -
Scarlett

 

[Esther12]

Not a depressing post at all, considering your circumstances.

I know what you mean, about the sense of injustice at having to bear the burden of your illness alone, when a more respectable diagnosis would have led to real support (although perhaps not any more - lots of people with 'real' illnesses a being very badly treated).

 

[aprilk1869]

My mum has the diagnosis of MS and she's been denied disability. We had to print off a 4 page letter explaining why she can't work but haven't heard back yet. They ask stupid questions like "can you lift an empty cardboard box?"

It's easy to think the grass is greener on the other side but it's not. There was a woman on TV who was terminally ill with cancer and she was told she was well enough to work. 5 weeks later she was dead.

 

[Esther12]

It's easy to think the grass is greener on the other side but it's not.

Yeah. I think that, because there's so much quackery and prejudice around CFS, it's easy to assume that this is why we are often treated so badly. In fact, most people with disabling health problems, especially if they're poor and need benefits, end up being treated with disdain by much of society. This instinctively hostile response to weakness probably does as much to explain the quackery that surrounds CFS, as the quackery can explain the hostility.

 

[snowathlete]

The way the system should work is, if you are sick then the gov't helps you financially, the money coming from taxes, which if your anything like me, when i was working i paid thousands upon thousands.

But the way it really works is, the government try to avoid paying you anything they can. They are quite content for you to die in the gutter and recieve nothing from them.

So, go in with your eyes wide-open, realising that they will probably deny you the things you are entitled to, even if you have solid evidence of your illness, they will, without justification, just ignore it and tell you to get a job (even if you already have one too) and you will then have to fight them on it if you want anything.

They will usually deny you benefit and give no reason for it, despite their own guidebook saying they have to justify their decision, especially when it is in conflict with the medical evidence supplied. But they wont. The reason it is like this is because most sick people simply cannot go through their lengthy complaints procedure, which is designed to wear you down and upset you more. There is no attempt whatsoever to be fair or even to do what they say officially they must do. The tiny percent of people who do continue to fight it, are usually those with family support (in my case my wife and my father) and even then it takes ages and ages and ages. I think i will win my case, i absolutely should, but the system is so corrupt that maybe i wont, even after all that. I may be left with court, my only option to get justice.

So, you can do it, but be aware of what is really involved if you want what you shouldnt have to fight for, but do.

 

[justy]

Hi Scarlett, i think if you are disabled enough that you have mobility problems or need help with everyday tasks such as cooking or going out to appointments then you should absolutely apply for DLA - its not dependant on your ability to work or not, many people who do work get it.
I applied using the advice from the benefits and work guides plus i had a letter from Dr Myhill (i am a patient of hers) and i included all the tests i had had with her that where abnormal (not standard NHS tests)
I gave supplementary pages detailing everything i need help with including examples. You can apply for this help even if you dont physically get the help you need. For example, i can shower and wash my hair (but it leaves me exhausted) but i couldnt style my hair, apply make up and shave my legs everyday without becoming much worse - these are things that they consider it reasonable you be able to do every day like non disabled people can. So i said that i needed help with this. It doesnt matter if you dont actually have the help, you must compare yourself to a well person.

I got higher rate mobility (although my ability to walk fluctuates i do use a wheelchair for longer trips otherwise i cant get out with my kids) and middle rate care, without a medical. I am so grateful for this as it has made such a difference to our finances (at least until i lose my ESA) which were very very dire for a while.

The process of applying was quite long and a bit depressing at times, but worth it in the end. I now even get a disabled badge for my car, whereas before even though i had a wheelchair i couldnt use the disabled parking.
Best wishes, Justine.

 

[anniekim]

I've been receiving DLA for 12 years having reassessments about once every two years. I seem to have been lucky as apart from once I've always had it awarded and at the appropriate rate. The one time I wasn't successful I still got it but not at the higher rate I had asked for. At this time I was bedridden and so dad my dad filled it in on my behalf. He didn't give enough detail and on reconsideration they gave me the higher award

I've always used the m.e charities guidelines for filling it in and in recent years the excellent benefits and works website ones too. Without them I don't think I would have been successful. You do need to give lots of detail and repeat the info for every question

As you point out, there are no diagnostic tests for m.e currently but I did always get a supporting letter from my Gp and in recent ears my NHS M.e consultant. I'm sure these both helped too. So don't be too disheartened it is possible to get it with m.e

When they replace dla with pip the thresholds are lower and less people are going to be eligible for pip which is worrying, so do apply now. With pip I see it that the person has to be very disabled to get help and those with moderate m.e although still disabled will find it harder to get it, it's very unfair...

 

[taniaaust1]

As there are no diagnostic tests for ME, they cant expect you to provide them with abnormal test results and rather should be going by what your doctors are saying and how it is affecting you.

There are abnormalities to be found thou in this illness but they will only be found if the "right tests" for things which are often found in this illness are done.. and unfortuantely those arent standard tests most doctors do.

eg Tests like EEGs, rombergs test, tilt table testing etc "may" show some abnormalities

 

[PhoenixDown]

...It's easy to think the grass is greener on the other side but it's not. There was a woman on TV who was terminally ill with cancer and she was told she was well enough to work. 5 weeks later she was dead.

To be fair though, on average people with other illnesses are a hell of a lot better off in terms of disability allowance, community support, respect from medical practitioners, believe from family, etc.

 

[alex3619]

There are lots of abnormal results in ME, but these are all non-standard tests. They are also not currently considered diagnostic. If I am reading the signs right though, at a research level sensitivity of tests is now up to 97%, and specificity up to 92%. Its only a matter of time before we have definitive diagnostic tests, as well as biochemical tests for severity.

For example, more severe patients have very high levels of lipopolysaccharide in their blood. This triggers alls sorts of biochemical changes, which in turn impact the brain and energy. This is still being researched however. So the issue is NOT that there are no useful tests, the issue is that they are not recognized and approved. If they don't run useful tests, they wont find anything. Its a bit like a bad Monty Python episode.

In my opinion: EVERY ME patient should have both a structural and functional MRI scan. They should have a mitochondrial function test. They should have a serum LPS test, though CD14 may be a more reliable marker. They should be tested for sIL2r and oxidative stress. Their heart ejection fraction should be measured lying and standing. They should have a tilt table test, a test-retest exercise study (with VO2max) and a sleep study. They should have an extended neurocognitive test focussing on processing speed and mental integration. ALL of these cost money. They also show abnormalities but do not tell doctors how to treat them. The argument is that these tests should not be run because they can't treat these things. However they do show disability - so the reason for denying them on medical grounds is a slight of hand to deny benefits, even if that is not the intent.

The other argument that arises is about causation. So what if we find things wrong, the argument goes, it still doesn't tell us what is causing it! This is again sleight of hand, measuring the physiological dysfunction is all that is needed to show disability - we don't really understand many diseases but can still show how they effect people.

Bye, Alex