Claming DLA for Heart Failure

FrazzledMumof4

Hi all
Have been told by my health visitor to claim for DLA as I suffer from Heart Failure & LBBB. The cause of my heart failure is still undiagnosed and I am constantly battling to get sorted, why oh why do the hospitals just want to treat with pills and send you on your way. I am taking daily medication of Ramipiril (7.5mg) and also taking Cyclizine for the vertigo it causes me. I cannot walk very far without being incredibly out of breath and lethargic, simples chores around the home just wipe me out, I have to rely on help from friends to get children to school and to do shopping trips (food) and my quality of life has just gone downhill. What I would really like is for the doctors to just give me a pacemaker or a biovent which will really benefit me in a huge way and I will be able to do all these things for myself.
In the meantime, I claim DLA for my son who is autistic, currently receive HB and CTB also. I also receive Child Tax Credits. All is greatly appreciated and I plan to go back to work once I can get sorted with my heart as I hate not working.
I almost feel as though I shouldn't claim DLA but if it will help to pay someone to come and help me for a few hours a week it would be very useful.
Does anyone here know if I can claim for Heart Failure and what the process is compared to that of applying for a child. I am 37 years old.
Many thanks

Torry_Quine

DLA has got nothing to do with the diagnosis but is all about your care and mobility needs which is exactly the same as for a child. Do you need help with cooking meals, personal care, dressing toileting etc as these are the things it is given for?

clarissa

I get DLA HRM for heart failure due to left ventricular non-compacted cardiomyopathy, with very similar symptoms to you. I don't have any direct care needs and work full-time with a bit of a struggle with the tiredness and breathlessness. I didn't have a problem getting DLA but it was pretty traumatic filling the form in when you have to face up to how things have changed. I sent in copies of all my investigation results and consultants letters, which basically spoke for themselves.

You don't say how long ago you were diagnosed but I've improved quite a lot with the medication. I still really struggle with breathlessness and can only walk short distances without chest pain and exhaustion but most of the palpitations have stopped eventually. I have a blue badge and although I don't get to go out that much because I can't walk far and to be honest working and housework leaves me too shattered to do much else, it has been invaluable.

FrazzledMumof4

Thank you Clarissa. I have been like this for just over a year and am seeing a consultant at St Mary's in Paddington next month, no official diagnosis has been given yet. I take 7.5mg Ramipiril daily but cannot go higher because my body can't handle it (potassium levels rose). I know what you mean about the tiredness and not being able to walk too far, I get tired out so easily and even though I sleep about 10 hours a night I wake up feeling like I haven't slept at all and it takes me a few hours to be 'normal'. The chest pain is awful at times and there have been a few times I have ended up in A&E for the night.
Would be good to be in contact with others suffering like myself, if you ever want to stay in touch drop me a PM. I am also on facebook and have just started a blog so I can 'vent' about how all this makes me feel.
I already get DLA for my son who is autistic and I know all too well about filling in those forms, it's a hard hard reality check!!

Anubis_2

I have congestive heart failure and get DLA although I have other conditions as well, such as MS, CFS, RA, asthma etc.

They can not doanything other tham medicate at this moment in fime. I experience breathlessness and chest pain etc. I only have to e moved from my bed to the bathroom and feel like I have run 5 mile.

The main issue with DLA is not the name of your condition but how that condition affects you, from the care needs to walking.

sangiar

Anubis wrote: »

I have congestive heart failure and get DLA although I have other conditions as well, such as MS, CFS, RA, asthma etc.

They can not doanything other tham medicate at this moment in fime. I experience breathlessness and chest pain etc. I only have to e moved from my bed to the bathroom and feel like I have run 5 mile.

The main issue with DLA is not the name of your condition but how that condition affects you, from the care needs to walking.

Given your diagnosis, how did you prove to the DWP that you have problems walking - distance, manner, time taken etc?

I have measured my walking ability (I also have severe heart failure amongst other things), down to the metre, second and description. Yet on three occasions the DWP write back to say that I don't have any problems with mobility!

Anubis_2

sangiar wrote: »

Given your diagnosis, how did you prove to the DWP that you have problems walking - distance, manner, time taken etc?

I have measured my walking ability (I also have severe heart failure amongst other things), down to the metre, second and description. Yet on three occasions the DWP write back to say that I don't have any problems with mobility!

Congestive heart failures is just one diagnosis, I have other conditions which affect my ability to walk such as RA, progressive MS, fibromyalgia, hypomobility, thallasemia etc.

All proven with relevent tests such as MRI, Bloods, xrays - the type of MS I have affects walking, as does the RA, etc, etc, put these together with heart failure and severe asthma and you get a volatile combination. I am pretty sure they can conclude I would have difficulty in walking.

I have also had an Atos Dr out, who performed tests, such as stroking bottom of feet with sharp object, listening to heart, looking at muscles, doing an asthma peak flow test ( was 130 ) and given that my voice is consistently fragile and hoarse due to pain, coupled with permanent wheezing, from his own test results and my condition I am pretty sure he also concluded I could not walk, infact he stated such and didn't bother to make me try because he could see there would be little point.

sangiar

Anubis wrote: »

Congestive heart failures is just one diagnosis, I have other conditions which affect my ability to walk such as RA, progressive MS, fibromyalgia, hypomobility, thallasemia etc.

All proven with relevent tests such as MRI, Bloods, xrays - the type of MS I have affects walking, as does the RA, etc, etc, put these together with heart failure and severe asthma and you get a volatile combination. I am pretty sure they can conclude I would have difficulty in walking.

I have also had an Atos Dr out, who performed tests, such as stroking bottom of feet with sharp object, listening to heart, looking at muscles, doing an asthma peak flow test ( was 130 ) and given that my voice is consistently fragile and hoarse due to pain, coupled with permanent wheezing, from his own test results and my condition I am pretty sure he also concluded I could not walk, infact he stated such and didn't bother to make me try because he could see there would be little point.

I see. So you did not produce any deinitive evidence that said that you can only walk..... over ......secs... in a ......manner.
That's what is troubling me. I am being told that that is the sort of evidence the DWP are looking for, not confirmation of a disease or illness from which any sane person could deduce that walking would be impossible given the situation. The Tribunal twice told me that I failed both DLA appeals because I did not produce the right type of evidence. Proving what is wrong with me has no bearing whatsoever, proving that I can't walk does I was told!

How on earth did you manage to get a DWP doctor out to you? Twice I demanded that the DWP do that, twice they refused citing that they have enough evidence to show I can walk in excess of 500 metres with no difficulty - errr when, where?? Even the GP report, that whilst not giving any factual information did state that whilst care and mobility needs are not known, it was believed that there are some.

Finally I like your signature at the bottom, Absence of evidence is not evidence of absence, I wish the DWP and the Tribunal would see it that way but they don't!

mouseymousey99

Sangiar, reading through your various posts - perhaps if you had asked not demanded you may get somewhere.

sangiar

mouseymousey99 wrote: »

Sangiar, reading through your various posts - perhaps if you had asked not demanded you may get somewhere.

Maybe, but that is how I am with the DWP!! Ask them nicely and they do nothing from experience. Demand something and you have half a chance. In this case, none at all!!

Still it is in the hands of the Tribunal again for the 3rd time. Maybe I might get lucky this time round, who knows.

If not I give up. But I will damn well make sure that those that I know that are receiving DLA currently and are, shall I say, not being entirely truthful about their abilities, reviewed thoroughly! There are 5 that I suspect are in this category.

JFKS

FrazzledMumof4 wrote: »

Hi all
What I would really like is for the doctors to just give me a pacemaker or a biovent which will really benefit me in a huge way and I will be able to do all these things for myself.

I have heart Failure Cardiomyopathy, and LBBB, I have a Bivent fitted and I can honestly say they are not the be all and end all, There are allot of us who have had them fitted only to find they are not successful as they like to make out. and the procedure to fit them is not as basic as it seems. I would rather not have had mine fitted, I notice you are in London, The best hospital for Heart Failure is the London Heart, ask for a referal.

It has taken me 3 years to get DLA and then it was only when my consultant contacted them that I was awarded High Rate Mobility and High rate Care after appeal., Considering I spend at least 3/4 days in bed a week with sheer exhaustion, I was still borderline of getting the care side .

I take each day as it comes, I have good days and bad days, I take Ramapril at a dose of 20mg plus Diuretics, and other medication, My next option is a Heart Transplant, and thats another nightmare.

DLa is not based on the name of the illness but what you can and cannot do,

I wish you all the best but you will have a fight on your hands,