I have been signed off work for last 16 months, only on basic UC. GP suggested claiming for PIP and additional support from UC, but both say I am not ill enough.
I have had permanent AFib for last 15 months, had Cardioversion last August, lasted less than 1 hour, came back with a vengeance, under Thoracic consultant, as breathing down, having further tests. I have osteoarthritis in right shoulder and left hand, also Dupuytren's contracture in left had, had 2 surgeries already. Due to a number of factors and cup of life being turned upside down, attempted suicide, spent 3 weeks in hospital. I also have high blood pressure, mainly diastolic is between 95 to 104.
Having lung function test and Polysomnography tests done, spoke to cardio consultant yesterday, being booked for another Cardioversion and referred for a possible cardio ablation in next 6 months hopefully.
I have days I just want to sleep, and struggle to do day to day things, other days not to bad.
Consultants and GP's, want me to rest and not work, but I am struggling to survive on basic UC, Thoracic consultant says I might loss my driving licence due to issues.
Does anyone have any advice or suggestions, that might help me get at least PIP, as my life at present is rock bottom.
Thanks
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BHFK967
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Sorry to hear you are going through such a rough time just now.
Check out this website entitledto.co.uk/ to see what is potentially available to you.
For PIP, almost everyone gets rejected on the first application, you can appeal this. From what I can gather, you need to demonstrate quite strongly how your condition leaves you unable to work/live without assistance. I remember my mum being assessed and refused the first time because she could shower unassisted and make a cup of tea... hardly the criteria I'd set for working a full time job. There are organisations that can help you complete the forms - ask your GP if there is any support in your area. And if you haven't already, ask for support in your mental health as well - it so often gets overlooked when we're physically ill.
My experience exactly. Because I could bathe without support and make a sandwich I was deemed ineligible. Absolutely shocking.
Thankfully, I’m much better now than I was then and I’m back at work. Honesty don’t know how people can live on UC alone.
Have been told you need to explain the impact on your mental health but I was so happy to be alive, I didn’t have any anxiety/stress or any other issues.
PIP isn't about work capability, "Personal independence payment" is about ability to carry out personal and domestic activities of daily living - which includes personal hygiene and ability to obtain food and drink. It is very much based on what you can and can't do not on what your medical diagnosis is, something Doctors often don't appreciate! Think it's always good idea to get input into filling out forms from benefit experts, individuals are often reluctant to acknowledge even to themselves how much they struggle with simple everyday activities.
hello very useful link - looks like lots of help free - what’s your thoughts on subscribing albeit there is a cost? Is there a lot more to learn Or can we get away with the free stuff? (I’ve been procrastinating had the blank form sitting here for a while)
Personally I felt the £20 fee was worth every penny.
I followed the advice given and I was successful first time. I was awarded a PIP initially for 4 years, then enhanced for both sections indefinitely on review.
hello I will look at subscription, I just filled in the PIP test and I was very surprised by the “positive score”. I really thought about my worst moments when answered and don’t believe I overstated as some I scored zero.
Sorry if highjacking this post but wanted to say hope helps BHFK967 and others following as the link you’ve provided is a really really helpful source of information. Thanks again.
I don't understand why anyone is paying for advice when it is free.The welfare advisors to see you are claiming what should be yours are there to help, and free, look up your local one.
PIP is always refused first time, you also need to answer questions that you would be on your very worst days, we have good and bad, you need to go with the later OP BHFK967
Yes, I was awarded the old DLA in 1993, and after do many years indefinite time. When they change it to PIP I had to go through the whole form filling and then a home visit before awarded the benefit, I will have to do it again in 10 years even though my disabilities is ongoing and debilitating, I have also 6 months ago been diagnosed untreatable heart failure.The thing is in 2008 I had to go to a tribunal as they stopped the incapacity I was on for over a year this took, BUT I found the legal welfare department who I got in touch with and they did my whole defence statement for the subsequent tribunal, which I won with a full apology and refunded the full amount of the payments I had been stopped.
I was told just after from other people they actually paid for help in their defence statements, one was £80 😵💫 which I found shocking, but not one single one of them was awarded the benefits back.
Yes first time applications seem to be always denied, but you just reapply again, the best way to answer all the questions is always on how you are on your very worse days, don't be tempted on my worse day or it varies from day to day, it just muddies the water so to speak.
Also it's no good asking for medical scans etc after you get these forms they will be no good, as it's an ongoing illness from past leading to receiving the form.
Im in a similar position. Ive have three cardioversions, two ablations, one of which i was fully awake through and screaming. Left me with ptsd. I suffer with depression a weak left side now and am still in afib. I find it hard to move my arm in certain positions and have had to leave several jobs ive tried to do. I tried to apply for pip and even though i forget to feed myself due to my terrible memory as well as have difficulty doing day to day stuff i was refused with 0 points. im due to have another cardioversion and to be quite honest i would give a toss if i didnt wake up. I have nothing to do during the day. My family are sick of my depression and doctors have been shit.
Im sorry if my truth may upset some people. It certainly effects my mental health on a daily basis. I cant sleep at night as a result and have become very depressed. Now im sure not all people that undergo surgery feel everything that happens to them and is held down screaming through the surgery. In my case this happened. I dont find it clever as you put it. In fact i couldnt give a toss about your opinion as its so far detached from my reality to be on another planet. That said i try to be nice to most people i meet in life yet sometimes i feel the need to respond to such pure bs.
I’m sorry if I upset you, but I was only trying to protect other people. Everybody on here has their problems including depression so frightening people really doesn’t help. I’ll leave it at that and hope( like myself) that you’ll feel better soon.
I'm so sorry to hear about your plight. Try joining 'Benefits and Work' which gives advice on claiming PIP amongst other things. They are a bit of a campaigner for the cause as I believe that it isn't the easiest benefit to get although your situation sounds pretty dire to me (not that I'm any expert) so good luck with the claim.
I'm just signed up for their email circulation as I'm thinking I may claim at some point due to my arthritis but you can join as a member and they do courses to help people to apply for a PIP. I've not tried it and don't know anything about the quality but might be worth a go.
The emails come from campaign@benefitsandwork.co.uk. It doesn't have 'no reply' in the email address so you can probably contact them that way although I've no doubt that they have a website somewhere,
Good luck, I'll be interested to hear how you get on. If you don't get if first time for any reason, make sure you appeal
Hi, I’m older than you so come into the Attendance Allowance range. I had a lot of help from the Citizen’s Advice who helped me fill in the form. They must have got it right as it was awarded at the highest level within three weeks. Mind you it does make you wonder how ill they think you are. Good luck🤞
Attendance Allowance tends to be less stingy. If you have got a good (if you know what I mean) list of serious health conditions they tend to be quite biddable.
Sorry to hear you are poorly. Like the advice above please check out benefits and work website that was invaluable for my own pip application. It’s not the illness but the fact your day to day activities are affected that qualifies you for pip. It’s important you get help to complete the pip form as the evidence you prevent must indicate -
*your not able to do something repeatedly, *causes discomfort or worsening symptoms, *if you do an activity does is it take you longer that someone else to complete or recovery afterwards, *do you use aids to help you and even if you don’t would you benefit from using aids.
please ask the DWP to appeal I think it’s called a mandatory reconsideration notice. You have to act on this quickly 1 month from the date of the letter.
Let us know how you get on. Good luck with hospital tests.
Hi same advice from me. Do not do it by yourself. I got help from Welfare rights at my local council.?They advise on all your entitlements and send someone out to help you fill in forms which they make look easy its all about knowing how to answer correctly. Can you carry out tasks 1. Reliably 2. To a standard 3. Repeatedly. Anyway let them help you its way less stressful.
Just to add my thoughts to those above....apply. It would appear that almost everyone is turned down at first application. But get help to fill in the form...its as long as a PhD thesis and there is a way to fill them in. Give as much information as you can based around your worst day. There may be organisations where you live who will help you to do this - its worth asking the social prescriber at your GP surgery who to contact for help. Citizen Advice can often help but they are overwhelmed with work. One thought - is there a local MIND where you live - they often have benefits advisers as many of their clients will need support . Its a difficult process and it sounds like you already have enough to deal with without the hassle of the DWP - but PIP is there to support your daily living expenses and does not have to forever, just until you are well enough to resume your old life. If you are turned down on first round, appeal. That is a somewhat stressful process but many many rejected applications are approved on appeal. Good luck.
the best advice I had for filling in pip was to describe your worst days ignore the good days. But don’t overdo it
I'm sorry you've had such a rough time of it. The first thing I'd say re PIP is get some help, urgently, in making an appeal and filling out the forms. It's obvious you should be entitled. I used to warn people whom I helped (through work) that the full description of all their disabilities would make them feel like an old crock, because sadly the system only accepts our limitations on a bad day, when really we're trying to live life to our best ability. It's so easy to miss details regarding function and the questions are biased against mental health limitations - so please get help! And another tip - keep on reminding yourself that you are not your illness, you're a whole lot more than that! But the system requires you show how your illness reaches every corner of your life. Let's hope you get a decent rebate from the time you first applied - you certainly deserve it! Good luck 😊
I had that problem had help with application appealed got lower amount, 3 years later got overturned reapplied went to appeal then attended a court tribunal I now have PIP at lower rate for living/ mobility indefinitely my Cardiologist was disgusted by this and wrote me a letter confirming my diagnosis, you need to send them photocopies of anything that helps your claim ie consultant letters hospital info, list of medications anything that helps, good luck.
I am in the same boat as you and just about to apply for pip. If your A fib stops you from walking more than 50 meteres with an aid, such as sticks or crutches, that will get you 8 points and you may qualify for a £25 per week payout. Read and complete the form caregully and get as much evidence from yoyr cardiologist/gp as you can. 60% of pip applicants are rejected. Do your homework, make a watertight case and you will qualify. Its all about the points. You can do a self assessment online which will give you a good insight.
when you apply you have to complete the form with your ability on your worst days, and give an idea as to how many bad days versus good days you get. You can appeal a decision if you have been turned down. Try and add as many support letters you can from professions, and family members who need to help you ie make lunch etc. safety etc is a high issue are you safe or do you have dizzy spells etc which puts you at risk
Sorry your not feeling great, I’ve been off the last eighteen months due to Heart Attack and cardiac arrest, when you claiming for pip tell them about your worst days, and if your not driving how you struggle to get around, don’t be proud, also try claiming for ESA also apply for a Blue badge off the council, you may not be driving but you can still get one, if you get pip you might be able to get a bus pass as well, it’s a minefield out there but claim for everything, even help with your council tax.
I have just applied myself as I am also in constant AVIB, heart failure and am waiting for a new heart, I have had 4 ablation. I have not heard anything back from UC at the moment but am told liability is it will be rejected and would have to appeal, so although I have had no official response yet I am preparing my self that I will need to appeal which I can see is an opportunity to yourself with doctors and consultants letters backing you up.
Appeal the decision as it’s not about the condition it’s about how it affects life. If you have a welfare officer in your area I would get them to help you fill it out.
Hi am on sick 9 months on from HA I get uc and also got told to apply for adult disability as this replaces pip in scotland I would apply for pip as you should come under qualifying for it as it covers up to 70 different ailments give them a ring and discuss it with them or speak to CAB they have been brilliant in helping me sort everything out as I was against applying for universal credit but the dwp couldn't have Bern more helpful with me here in shetland they have really helped along with CAB
Applied for pip dec2022 just got full amount back dated . They do contact your doctor, cardiologyst and work for evidence. My condition was similar to yours ,your not on your own best of luck.
First of all I wish you well and go along with the advice here. You can claim PIP but also the UC capability to work. Both are rubbish systems.
I have all sorts wrong. Claimed for PIP and limited capability to work as medical and even UC (I get nothing I must add), but both rejected. I am in appeal but takes months. Really a bad system. I have mo choice but have to work and self employed however much I lose due to ill health.. Good luck to you. Oh just had a text saying relooking at my case in late April. I do not hold out much hope. I think they should base it more on medical issues as with me it varies immensely rather than those descriptors. People with heart failure just end up dying before retirement without a penny to ease the burden and stress which I reckon will kill me due to financial worry.
trying myself to get pip help, their really not helpful and want so much medical evidence that is mostly unavailable as treatment letters and appointment letters are not deemed as proof of conditions, none of the consultants or the GPs updated their medical records very well so getting actual medical info explaining your situation is really difficult, I don't know why these organisations don't have medical records access when they are assessing you over the phone about your medical history and circumstances, it really is a lot of time wasting back and forth especially if appealing a declined discussion, things would run so much better if they all did their jobs properly and updated your online health records and then the PiP and dwp had access to these... it's very frustrating trying to get the information yourself and dealing with a severe heart condition. I'm 6 months into a claim so far and got rejected once as apparently I didn't explain myself correctly on the phone assessment, you almost have to be a medical professional to answer these questions correctly lol, they say they're there to help but they really don't and it just puts added stress on a already stressful situation as it's all based on a points system and if you don't say exactly the right keywords then you don't get the point on that question, unfortunately life isn't as clear cut as the question asked..
I'm quite a proud man of 47 and feel like some days I'm of an age and ability of a 90 year old but unless you feel like that everyday but only some of the days in a week then you don't get the points, which is a ridiculous way of thinking, the assessment doesn't take into account your actual personal situation but more of a broader perspective so you almost feel like you have to lie or exaggerate your everyday situation to being a constant daily ordeal, unfortunately some people are very clever and experienced in passing the assessment interviews as they've got years of experience in claiming of the system, I've worked all my life up to this point and Id say im almost a little naive to the whole benefit system yet my opinion is the benefit system is there for everyone when you need it and should be lent on when you don't lol??, again unfortunately people who know how and what to say to claim when really they don't need it but take advantage anyway, just ruins it for the genuine person who really do need the extra help at their time of need because the system doesn't cater for inexperienced people like us im afraid..
My only advice is to study the rules and watch a lot of YouTube videos on the assessment criteria and answer the questions with almost precision accuracy on the points system so you reach the eligibility points criteria.
I find it slightly immoral to do so but it's the only way to get the help you really need or your just be banging your head against the wall for months.
I wish you all the best and hope it all works out well for you, it's definitely been a long road for me and definitely an eye opener to the failings in the benefits system lol👍🏻
Agree 100% with you, I have no started taking pictures of my medical records when doctors and nurses not looking, as although your records, some do not like to share
sorry to hear you are feeling so poorly and having added stress through trying to claim financial assistance.
I made an application for PIP for my sister and was advised to fill out the information as you would feel on a BAD DAY and disregard good day feelings.
They will be looking at how far you can walk unaided, or aided, and help you require.
Try filling the forms out with ONLY BAD DAYS in your head.
A little update, had a lung function test last yesterday, I asked questions as usual, my lungs should hold 4.76 litres, on test was 2.84, other 1.84, made me cough, dizzy and feel sick for a while after, nurse said I might need a inhaler and possibly redo the test in a few months.
Also done a partial Polysomnography test last night, on collect stuff, they said, try and get 8 hours, that's a laugh, got 4 hours and 23 minutes sleep last night, and night before 46 minutes.
People really don't see or understand how we are all affected differently, even some doctors do not understand.
Do not try to do this form on your own You need help from someone who knows how to fill them in if you have no one to help here are some pointers You have to spell it out repeat yourself in every question if symptoms are the same as already said concentrate on bad days and remember it is more than one criteria for each question and answer with the pointers below on every question Can you do it in the length of time you did when well if it takes you 20 mins instead of 10 say so on each question and the symptoms you have while trying to do it
Can you do it safely in other words are you likely to feel dizzy lose balance in pain out of breath etc say so time and time again Are you more unsafe at night if so say so
How far can you walk again ,assuming it's a very short distance with symptoms say so and how the symptoms make you feel. Emphasize the exhaustion with each question
Finally be honest with everything a lot of people tend not to be strictly honest with things like toileting and dressing
If you are exhausted and in pain Emphasize it
Hopefully some of this may help I think a lot of people try to fill them and don't give enough info.The boxes are usually too small to give a full picture so I put in every box see attached notes, number each question and answer it
I have done many of these forms over the years and the more info they have the better your chances If rejected ask for a mandatory reconsideration again you will have have your copy with points awarded Challenge all you think are wrong and say why If you haven't seen what points you got for each section you can find it online
Stay strong and don’t let the negativity of the DWP get you down, I have claimed PIP about 13 years, the most annoying thing was if I called the dwp to find out if my application was approved or rejected, their response was “ it’s in the system , and it usually takes 11 weeks, but because you have called it will now take 11 weeks from today “ I couldn’t believe it I screamed down the phone with a few Anglo Saxon expletives, weeks later I had a letter saying that my application was rejected, another phone call and I really lost it , I had chest pains and my blood pressure went through the roof, after 25 weeks I thought sod I will call again, and surprise surprise, we are pleased to tell you that my application was approved,I cried my eyes out, since then on top of my chronic pain syndrome ( another name for RA ) I have had 1 heart attack 2 heart failures, diagnosed with COPD, the list goes on. So don’t worry about anything, just keep as calm as you can, a don’t let the system beat you, write to your MP write to your local council, write to anyone who are able to help you, stay strong don’t let the B******s grind you down
I have a lot of experience of PIP claims and appeals. The benefit is split into two parts, daily living and mobility. The assessments are based on how your various conditions affect you in your daily life. The assessment is a points system which is based upon what you put in your application form, what independent medical evidence you've got, and how you are assessed by a DWP healthcare professional. You have to be very clear and understand that the assessment is not made on the conditions that you have but on how they affect you. So it doesn't matter how how serious the list of health conditions sounds, it is how you are affected in your daily life. I volunteer as a face to face Citizens Advice adviser, and would recommend you try and get their assistance with form completion. It is quite an art describing your problems to maximise points scored. There is lots of info on internet, including citizens advice, turn2us and more. It is important to understand that it is not how entitled you feel but about how you explain your problems, and the evidence from medics that states how you are affected. Eg lack of motivation, extreme tiredness, lack of grip, lack of mobility, reach etc. When you go for your medical, the health care professional, in reality, more often than not, isn't neutral, he/she won't looking to help you with your award. They will scrutinise what you say, how you act and how you move, for reasons to disallow your claim. They can be very charming and disarming, or alternatively cold or almost rude. Do not think they are on your side.
In fairness they meet a lot of people who do not meet the criteria, and are looking to pull the wool over their eyes.
It is important to know what you are talking about with a claim, get loads of evidence, and get expert advice.
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