Disability Benefits: Hi, this is my... - British Heart Fou...

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Disability Benefits

viv0147 profile image

Hi, this is my first post on here I am a 73-year old male, I have an Abdominal Aortic Aneurysm and unfortunately, it is too dangerous to have an operation, the last check it was 6cm so basically once it ruptures I will die. So my question is would I qualify for a disability benefit apparently in the USA that is the case. Thanks

35 Replies

Hi Viv, sorry to hear your predicament 😢 My elder sister had an aortic aneurysm same as yours. I’ve been a Complementary Therapist of 23 years and tried to get her to get a 2nd opinion. She was miss-diagnosed few years before by her GP. Went to her house in Cyprus and went to the hospital there who refused to release her as she desperately needed 3 stents in her heart and there were no pulses in her ankles! A well known hospital in the UK, the Drs said oh they might damage her kidneys and she’d have to go on dialysis. There was a man who’d had similar and had an aortic graft in a Lindon hospital. Sadly I could no persuade her and sadly she passed away.

Try and seek another opinion 💗💗

viv0147 profile image
viv0147 in reply to LaceyLady

Thanks for the reply, but I have been monitored for the last 6 years and it has gradually been getting bigger, and because of other health problems I was told if they try to operate I would probably die on the operating table, or there would be probable complications which would make me infirm. At the moment I am enjoying my life, so x fingers I will continue to do so until the inevitable happens.

LaceyLady profile image
LaceyLady in reply to viv0147

Sorry to hear that 💗

Wales UK

Thanks for the reply I am a pensioner but I don't need attendance it was just a thought but nevermind

Debtyd profile image
Debtyd in reply to viv0147

You don't know unless you try and you have nothing to lose by applying.if you're not entitled to it then hey ho, but if you are entitled to it,then it's a bonus...good luck xDebx

Hello. Just to let you know, that you don't have to have any physical attendance. You just have to have the NEED for it. Contact Age Concern Wales and or your local CItizens Advice Bureau for support if needed as it's quite a detailed application form.Best wishes.

Ask for a second opinion please!! My father in law had an 8am aortic aneurysm at 74 he had it repaired & they used mesh to strengthen it. It was done at the QE Birmingham 8-9 years ago

Viv0147, you should apply for Attence Allowance, you would be eligible for highest amount, there may even be extra benefit which you can get, do apply. Good luck. 💙

MaggieSylvie profile image
MaggieSylvie in reply to Kasmi

I have recently qualified for attendance allowance and use it to pay for a home help. I get my shopping delivered by Sainsbury's. However I find getting the shopping from the doorstep very exhausting, loading up the freezer etc. Lots of bending and lifting. It still beats walking round the shop while putting myself at possible risk of covid.

MelB51 profile image
MelB51 in reply to MaggieSylvie

Hi there. Can I ask how long it took for you to be deemed eligible for AA? I applied several weeks ago but I haven’t heard anything at all. Thanks.

MaggieSylvie profile image
MaggieSylvie in reply to MelB51

Hi MelB51, I did have to wait a few weeks but I got the acceptance letter much sooner than I was expecting, and I got top rate. You have to wait for the first payment, as it doesn't come at the same time as the letter. I don't think it took more than two months, and I was surprised. We have to factor in Lockdown, which keeps smaller staff to process the applications, but I don't suppose you will have long to wait now. Good luck.

Try Tesco;t hey will bring it in and unload it for you. I swapped because Sainsburys wanted me to carry it all in and i couldn't.

Tesco charge a lot more than Sainsbury's to deliver. I have been shielding, so during lockdown no-one has come into the house. Sometimes my partner can help - other times he is not aware they are delivering! Also, while I used to shop all the time in Tesco, I understand they are not ethical with many of their produce.

I bought a delivery pass with both Sainsburys and Tesco and there's barely a difference. I prefer Sainsbury for quality and stock levels b ut they've made it just too difficult for me so I've stayed with Tesco but since Brexit their stock levels have been awful. They were far easier during teh lockdowns to get delivery slots. They allow booking 4 weeks ahead while Sainsburys only do 2 weeks. It took away all the stress of trying to get a deliver y during the lockdowns. I had Morrisons at first who were superb but mine was all coming from the warehouse so there were no shortages. Then they moved it to the local store and knowing where that is situated, I couldn't face having stuff taken off the shelves having been coughed on and handled but who knows. The area had the highest covid rates in the whole of Lancashire.

I suppose it depends where you live, but it's much easier to get a delivery now (only £1 on saver) - you can get it next day. I didn't think a delivery pass would suit me; I have to live very much on the whims of my partner. Now, because nothing arrives fresh, we top up our vegetables actually in store. The stores here are quite empty, and I only went to Sainsbury's today because they had a nectar offer on fuel, which I needed. I also needed to post some Ebay items, and it's much easier to park than in a town.

That makes sense. I simply can't physically get round a supermarket so I Have no choice. IT has to be delivered. I hate when fruit's over ripe or going off but I have no other choice. I just spent he afternoon at he hospital and am so exhausted and in so much pain I won't get out of bed for 2 or 3 days. Been doing it since deliveries started- no choice.

Earlier this year I was similar to you. I tried to get round once, and took a "shooting stick" so I could sit down, but the meds seem to be working and I can do a bit more. I hope the more I do the better I will get. I find everything exhausting but I am not suffering the pain now that you seem to be having. I hope it's not going to last for ever.

I hope you do improve. I won't- have had this now for over 30 yrs; wheelchair then when my shoulders packed up, a mobility scooter. Saw ortho chappie today who refused to even try to operate on my shoulder; it's far too bad. I saw the x rays and actually gasped at the damage. 3 minutes standing is my limit; wasn't much help after HA as they refused me cardiac rehab. Trouble is no one looks at ALL the problems together, just each bit separately. I'm convinced it's 40 years of untreated Lyme disease.

You're right. NHS people, on the whole don't see the whole picture (person). You've more of a chance with an Asian doctor because many are versed in either ayurvedic or Chinese medicine and they're less likely to say "That's not my speciality". I don't know anything about Lyme disease or what you're supposed to have but it does sound as if there's something they're not seeing. No-one should have to rely on "mini-transport" when they don't have a diagnosis. It is not a treatment. It was bad enough for me having undiagnosed compression fractures for about six months. I'm still not diagnosed with osteoporosis but they are treating me for it and it's making a difference. I can stand just about long enough now to make a meal. Two days ago I walked in a town but it's so slow. I'm not like myself at all.

I was reading some of your earlier posts and I share your frustration about shopping online. I spoke to Sainsbury's and they said they would put me on a priority list (I already shopped online anyway) but I don't think they know what priority means. At the start I would have to wait three weeks to get a slot. It was impossible to keep up with fresh food and suddenly slots are immediately available. Where did all those other vulnerable people go? And they don't expect you to have mobility problems either.

It's clear you need help for your bones in general. They may not be able to operate but something like the alendronic acid I take may help you. Have they offered you nothing?

I have multiple little diagnoses like probable trapped nerve, fibromyalgia, neuropathy for each bit of me but no overall diagnosis. They throw pregabalin and amitriptyline at me which I can't take then say sorry, we have nothing else for pain. I've just been on oxycodone for about 20 years and of course my heart meds. Done every alternative treatment under the sun. Yes I wondered how Sainsburys had suddenly got so many slots for eht same week. I just assumed people were now going shopping now that they are back at work.

Well, if they're going to give you zombie-making meds such as amitriptyline, they might as well give you an opium based med that might actually work! 🤪.

I think a lot of people jumped on the bandwagon for getting groceries delivered. They were neither vulnerable nor disabled, and yet now the slots are more available, the shops (Sainsbury's anyway) are nearly empty. There's still no way I would do a complete shop on foot when they keep changing where they put things

I'm taking amitriptyline every other day now. I don't have enough oxygen in my blood and yet my GP thinks I should take it to kill several birds .... I DON'T HAVE DEPRESSION!! It doesn't help me sleep until it's time to get up and it doesn't do much for pain. I'm taking it now for peripheral neuropathy in my feet that doesn't bother me much. My next blood test will include diabetes but I don't think that will come up. If it was thyroid I wouldn't be surprised but that's been tested.

As for you, being immobile is doing you harm, I would think, and I would have thought a trapped nerve could be managed somehow.

Amitrip turns me into a zombie; pregabalin makes me suicidal- not an option. Opiates do help but only about 50%. They have no other options. I can't walk at all; haven't for about 8 years; just room to room then sit down. Re shopping, one driver told me he'd delivered to a house near us, young working people and they'd refused to take it because he was an hour early even though they were in. It's people like that who were stopping the housebound from getting food. It took me 4 or 5 weeks to teach by phone, some computer illiterate friends in their late 80s how to even do an order online

Why do computer illiterate people have computers? In defence of the people who refused their delivery, perhaps they were teaching from home or something like that. Even so, the slots are not limited to an hour until the day itself.

I was unable to walk at all until quite recently; I have just started receiving AA and now have a home help. My partner is blind which makes housework a double whammy - no see - no help. I am getting better but as I am aging, I doubt I will ever live as I do in my dreams.

Why do computer illiterate people have computers? - Totry to keep up with the way the world is going and keep in touch. They can email; they can browse which is all my husband can do. He's expected to have a smart phone to get messages from the hospital and doctor; to order his prescriptions online. He doesn't have one . I do but a PAYG since I don't leave the house. Anyone without a computer is now at a huge disadvantage. All it needs is someone willing to teach them. The couple who refused the order had no reason- I know them. Slots ARE one hour slots booked at the time of ordering. IT's only the priority slots that are decided on the day.

Oh right! I'm not prepared to pay £4 for a slot like that. But I wouldn't feel right turning a delivery away. They do sometimes come early. People need to embrace the 21st century - it's no good waiting until a pandemic when no-one can hands-on teach you! It's something I could do but I don't know everything! I think we all use computers for what we need and nothing else and other people have quite different requirements. What I am about to do is to mentor ex-offenders. I'm all set to go - just waiting for a bit more training and being set up for a service-user. I thought it would me out a bit more (though not quite yet) and I would feel I was helping society a bit more. I do feel quite useless since retiring and developing all these nasties.

Everyone needs a goal in life

My mother had an inoperable aortic aneurysm and lived with the condition for many years until she passed age 92. She was told that she could apply for an attendance allowance, but decided not to bother as she could afford to get what assistance she required through her own means. She never mentioned being eligible for a disability allowance.

Viv, it can be used to get someone to clean and shop for you.

Viv, I would echo the comments about Attendance Allowance, but also worth getting proper advice on what you would qualify for - there are a number of benefits calculator websites approved by the DWP, which you can find through the DWP web site.

Regarding your diagnosis of inoperable, at age 74. I agree with others, you should *definitely* seek a second opinion, which should be from one of the top Vascular or Aortic centres, QEHB was mentioned, and I would agree. I don't know which end of Wales you are, but Liverpool Chest & Heart is another.

Advice concerning situations such as yours needs to be from a centre where they can offer the full range of alternatives. Open surgery is only one option, the other one is EVAR, which is endo-vascular aneurysm repair, basically, a large stent which they insert via a small hole in your groin and expand it in situ. Not all centres, and in particular the smaller and/or less experienced ones, will be able to offer this. NICE produced updated guidance last year and eventually agreed with experts in the field that this was an option which should be offered to patients. nice.org.uk/guidance/NG156

I would also take issue with the idea you are inoperable due to age, that is definitely not the case, though what your other issues are I don't know, nor how they would affect that decision. Again, get a top-level opinion.

As a further point, aortic medicine has been advancing very rapidly in recent years, and nowadays even a ruptured AAA is not the end of the line. It is true it is a very dangerous situation, but if the worst happened and you got immediate treatment then there is a chance of a life-saving operation, though, again, to be seen by a top centre would give you the best chance. After my own experience of surviving a dissected thoracic aorta, I always advise anyone with a known aneurysm to wear a medical alert bracelet.

And finally, I assume you are keeping your blood pressure well under control? 128/80 or better.

Best wishes

Viv, topically!, I just found this post from a ruptured AAA survivor healthunlocked.com/bhf/post...

Firstly get a second opinion, don't just accept the diagnosis on what can or can't be done. Then do apply for attendance allowance. If you need help like with shopping you should get it. They don't allow specific disability allowance (PIP now) if you are over 65.

My husband had a ruptured AAA at 8 cm, fell down stairs as it happened and survived. He is now happily playing golf and doing 8 mile walks.The plan had been for him to go to St Mary's in Paddington for EVAR, as discussed above in Cliff's comment, but it ruptured before all the pre-op checks could be done, so he had surgery at our local hospital.

Please try to get a second opinion on this - surgery for this condition is improving all the time. Yes, it is very risky, but a rupture without surgery has only one outcome.

P.s. I presume you've been told you can't drive. The doctor initially forgot to tell my husband that.

Wishing you well.

I would like to thank everyone for their advice and information I will make further enquiries

This is where I am, I live alone in an upstairs flat which I love I have 2 grown children and 6 grandchildren who I love dearly.The consultant explained to me if I have the operation it may kill me on the operating table or leave me with serious bad side effects which would maybe require me to have to live in a nursing home.

So my independence would be gone, that possibility was something I couldn't envisage because at the moment I am feeling pretty good and given the choice of maybe a few more happy years or possible early death is a dilemma.

So much so I have told my Doctor I don't want to be revived in the event of the rupture, and I have given the same instructions to my consultant and the hospital.

After reading some of your messages I may have been too hasty, what advice would you give now you are aware of my current predicament. Thanks

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