Blackouts and DLA

Jo_King

I applied for DLA last year and was turned down, appealed and was turned down again. My MP is now looking into it - because of my experience of the medical and the Tribunal.

Last week I put in another application. I have fibromyalgia, and moderate to severe depression. I've just been diagnosed with severe orthostatic hypotension (by a cardiologist), which has been causing frequent blackouts and near blackouts. I've detailed the symptoms on my DLA application, and I'll send in a copy of the diagnosis letter when I get it. My GP is increasingly supportive, so I think he's on side.

The question is, does this make it any more likely I'll get DLA without a huge fight? The last experience was horribly stressful, and I'm already worried about this application. At the moment I'm barely going out, and living of microwave meals, because I'm too scared of blacking out! It's very scary, particularly on top of what pain and fatigue and depression are doing to my body. I know there are no definite answers, but are DWP more likely to accept medical evidence on blackouts than they seem to be on fibromyalgia?

Indie_Kid

Your symptoms aren't relevant as such - DLA is based on care and /or mobility needs you have because of your condition.

GlasweJen

Yep, you need to detail why your blackouts make you need care/supervision.

I too am a blackout sufferer (neurocardiogenic syncope) and get DLA middle care lower mobility because they happen more than a certain number of times per week, because they're completely unpredictable (no triggers/pattern that they can work out), because medication does not help and I get absolutely no warning at all if they are going to happen. If you get warning of your blackouts or if your medication can control them then you wont get DLA.

[Deleted User]

as SH says its all about care/mobility needs and the illness itself doesnt really matter,did you get help completing the forms this time?did you get help from welfare rights or cab with the appeal?
I`m not quite sure what you expect from your MP as a tribunal decision can only be challenged on a point of law,but hopefully your new application will succeed

munchings-n-crunchings

GlasweJen wrote: »

Yep, you need to detail why your blackouts make you need care/supervision.
If you get warning of your blackouts or if your medication can control them then you wont get DLA.

Two good points here.
Not only do you need to mention your blackouts, but highlight and give examples of things that have happened. It adds to your case of needing 'attention' or 'supervision'.

I would think, if your diagnosis is fairly recent, the DWP may want to see if your condition can be controlled by medication.
So although this adds to your care needs, the emphasis should still be weighted towards the Fibro.
Try and get updated medical reports. Ideally, these need to be dated within the last 6 months to be taken in to account. Remember medical facts are important, but it's your care / mobility needs that DLA takes account of.

It's helpful to write to your GP, and lay your cards on the table, telling exactly how you are, what you can and can't do, what help you need. It will make you feel like your ready for the knackers yard, but unless you tell them, they can't give the DWP the information, if they're asked.

It will be down to who is looking at your application, at the end of the day.
Get Welfare Rights, part of your County Council to help with the forms, if you've not already done so. This can make a significant difference to the way your application is looked at. A bad application is one, if not the biggest cause of a claim being turned down.

Regards
Munchie

Jo_King

Thanks for your replies.

I had CAB help with my last application. I based my current application on that, plus the Benefits and Work Guides. So the problem, the condition that causes it, details of the difficulties I have, specific examples, and how another person could help. So falling on the street a couple of weeks ago, and not being able to get up for 10 minutes. And the falls in the shower which have me bruised all over. And, because of the fms, it's incredibly hard to get up again, because of the problems with my wrists, and because I'm usually wiped out.

I get about 3-5 seconds warning about the blackouts. They happen when I'm upright - standing or walking, but that's the only known trigger. The cardiologist is trying me on a medication, but says it has limited effectiveness. I'm still reeling from the diagnosis to be honest - I was hoping it was something that could be fixed.

With the MP issue, my complaint is more about the way things were done - I'm not necessarily expecting the decision to change. I'm just very angry about how the system operates. I'm meeting my CAB rep this week to talk through the statement of reasons, and decide about whether there are grounds for appeal. But I wrote to my MP to highlight the problems with the system.

GlasweJen

I know someone through a falls supprt group who gets the taste of metal in her mouth literally as she's blacking out and cant get dla because she could theoretically sit herself down before she falls. Some of the medications are meant to be quite good, they did !!!!!! all for me but i know a few who take them and lead normal enough lives. The medicines most commonly used are beta blockers, fludrocortisone and midodrine. Ivabradine is currently being used as the latest up and coming drug. ATM I take Ivabradine, fludrocortisone and i'm on a high salt, high fluid diet with compression aids but they don't help me much because i've got a dodgy heart to start with.

Indie_Kid

GlasweJen wrote: »

I know someone through a falls supprt group who gets the taste of metal in her mouth literally as she's blacking out and cant get dla because she could theoretically sit herself down before she falls.

But is there enough time for her to sit down? Even if it's just on the floor? How safe that is, I don't know.

GlasweJen

theoretically she can just about get closer to the ground/move back away from anything dangerous but as she's actually losing her vision when it happens it rarely turns out that way. Every time I see her she's broken something/has a black eye etc. The OP has 3-5 seconds which I'm sure is more time than K so DLA is unlikely on blackouts alone.

OP you should fill in the form detailing all of your conditions, how they affect you and how they affect each other.

Jo_King

Hmmm. I guess it's down to how the decision maker interprets things. 3-5 seconds isn't that long - it takes a couple of seconds to register the 'oh heck' feeling, and then trying to get sitting down safely. I can assure you, sitting on the floor in an aisle of Tescos doesn't feel all that safe! Particularly with the room swimming, and feeling like you're going to throw up, and you're cold and clammy and shaky. My biggest fear is it happening when I'm crossing the road. It hasn't happened - maybe I'm just catastrophising - but it does worry me.

I guess it's best not to get my hopes up about DLA - my last experience has taught me a few lessons. The depression and the blackouts are both new diagnoses (within the last 7 months). I'm starting on midodrine, but for whatever reason, the cardiologist suspects it will have limited benefit for me. He's wanting me to think seriously about lifestyle changes to try to avoid risk. It feels like a real slap in the face, when I'm already struggling with FMS.

GlasweJen

Lifestyle changes tend to work best tbh, high salt high fluid diet works for most and has staved off the worst of mine even though i've been told that i'm the worst affected NCS sufferer in Scotland in terms of falls and my tilt test time (I'm quite proud, was totally out with no bp or pulse after 286 seconds, poor technician refuses to tilt me again). There are also exercises called tilt training which your cardiologist or a cardiac nurse can teach you, I mentioned compression in my last post; this is mostly best for hypotension/bradycardia as it lessens the blood pooling in the calves which is a massive risk factor in NCS which is very closely related to orthostatic hypotension. The exercises are actually quite relaxing, not pressing at all and largely involve standing still at certain angles in a silent room with no distractions.

ETA midodrine makes you feel like hell the first couple of days but stick in at it as it's one of the best drugs about for this.