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British Heart Foundation
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PIP home assessment

Hi all I was forced to take early retirement from my job, I was there for 30 years didn't even no I had a heart condition! I have dilated cardiomyopathy, heart failure, severe left ventricle systolic dysfunction mild right, osteoporosis, week muscles and a couple of other things I am the big 60 in October, I have a small private pension unfortunately not enough to keep the wolves from the door, and as I live alone I am struggling to do my homework and garden it's so depressing, friends try to help but they have there own lives, I therefore applied for PIP since I can't even get my state pension for another six years, if I make it till then!! Paid into it since 1974 great hmm, so back to the pip, after getting help to fill in the horrendous form I also backed it up with amongst other things letters from my cardiologist and gp explaining my condition and that I will never be able to work again, so sad, they are now sending an assessor to my home on Thursday I am so stressed and upset about it I have read so many horror stories of their lies and trickery anything to stop you getting any money, I don't think I could face a tribunal or anything but this feels like my last chance saloon to get any help, sorry for the long post but has anyone had them to there home for heart conditions char x

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I had home assessment for PIP. Just answer as if it's your worse day and tell the truth about how little you can do on them. Be aware that they watch all your movements in /out chair etc. It takes a while so be prepared for that. Remember it's not your illness that is assessed but how it affects your daily living. Good luck and just don't stress too much. X

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Thank you, I have just read so many bad stories about them,on the worst days I just have to stay in bed, not sure what they will say about that, I will keep you posted char x

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Sadly many people lack common sense. Recovering from a quadruple people assume I will that bit better each day. Whilst on average that is right I also have less good or even bad days. Yet they seem to accept, for example, that Andy Murray can have bad days.

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They just don't take into consideration how much our life's have changed and not just physicaly, I hope your recovery goes well take care char x

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Hi Char, it's good to hear from you, I'd been wondering how you were getting on - not so good by the sound of your post... I've never had a home assessment (I only get the basic/lower PIP) so I'm not sure how much I can help you. I would say, however, that the PIP assessor who looked at my claim could not have been more supportive (not what I was expecting after all the horror stories!) so there are some good guys in the organisation. Here's hoping you are lucky enough to get one of them. You do need this support and that's why you are anxious but it's also what the assessor will see and (hopefully) acknowledge. I guess all you can do is state your case...and be sure to explain what life is like for you on a BAD day, when you are feeling at your worst. Hope all goes well, keep us posted. X

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Hi and thanks, I failed miserably at the ESA assessment nil pointe, it was a while ago , things are a bit worse now, nice to here you got one of the good guys, they seem to be few and far between! I hope you are keeping ok yourself tc char xx

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Sorry to say but my granddaughter had them visit. The actual reason for hers being refused was 'Miss S was seen to make a cup of tea and lift the mug with no problem' Letters from GP and Cardiologist were completely ignored..

Took us four years to get her moved from 2nd floor flat, with no lift, as she couldn't climb the stairs. That was only with input from local MP.

She does have a mobility car which we fought for. This enables her to work two to three hours a day. More than that and she becomes cyanosed and breathless.

Basically, best of luck.

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That is shocking dwp should be ashamed puting people through that, I am glad that she managed (eventually) to get a new house, my MP is awful, but if need be I will go and see him tc char x

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I’ve not had issues wiv pip as on esa as well and had issues there. They puss ppl on jsa even if u can’t work so I applied for jobs and lucky didn’t find anything, as couldn’t work.

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This system really stinks. We've worked all our lives and get nothing. Iv been given sick note today as iv been readmitted to hospital. I don't even know what to do with it. Iv kept myself for the last 6 months with the little savings iv got. I am back at work part time but my ongoing symptoms of pots after HA makes it very difficult to work consistently. I need help with finances and am feeling the worst. Even enquired about early retirement as I don't have personal pension. You feel as if your begging. Sorry for going on a bit. Just needed to vent I think

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Hi not at all, it's shocking the way we get treated, it's not as if it's our fault we have a heart condition, I hope I can get help from the government but I am not holding my breath, I have read to many bad things about the assessors, I hope you get on ok and think about applying for help the citizens advice bureau are very good tc char x

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Thanks chaz. I get really angry about these things. You just keep calm and answer your questions as if your having your worst day ever. My friend went through it and she was turned down because she was clean and could make eye contact. Have you ever heard anything so ridiculous. I'd stay in pjs if I was you and look dishevelled. All the best of luck my friend

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Thank you, I will let you know how it goes char xx

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Hi Shoshov you mention you are working - does your company have a sick pay scheme? If not your are still entitled to statutory sick pay (as long as you have average weekly earnings above £116) SSP is paid by the employer for 28 weeks. There is a great website called entitled to which is an online assessment tool which can give you a detailed answer of help you can get. Message me any time if I can help x

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All you can do is be honest. A few years ago I took someone to a PIP assessment. The process seemed quite fair and they were awarded PIP a few weeks later. Two years prior to that I had an ATOS assessment that seemed faintly ridiculous and had my ESA stopped. Sometimes I think it depends on the individual assessor involved! :(

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I agree I had a bad assessor and then appealed and got an awesome assessor. I went from o points to full points.

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Thanks for your reply, it seems to be if you get a decent assessor they will listen and be fair, but on the other hand there seems to be right bad ones out there! Char x

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Sorry, found this funny! :)

Working at the Jobcentre has to be a tense job - knowing that if you get fired, you still have to come in the next day!

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😂😂😂

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I say this to anyone applying for PIP - there are some great groups on Facebook that can give you some great advice on the whole process. Citizens Advice are good and Google pip application - some great help and tips there too

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Thank you for your reply, I am just finding the whole thing so stressful, I am not on Facebook but I will check citizens advice thanks char x

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I used this site

benefitsandwork.co.uk/perso...

I was awarded a PIP, the stress caused me to have an episode of angina during my gome visit scared the assessor no end.

The whole system is deeply flawed and unfair for those of us with hidden disabilities which most of us with Heart problems have.

Describe life on your worst day be truthful and make notes of the assessment in case you need to appeal

Good luck !

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Thank you I will check it out, I can't sleep for the thought of it, the medical evidence is there, why do they have to put people through it, no wonder you had an angina attack, take care char x

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Hi I just had a quick glance that Web site looks excellent thanks x

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No problem,

I will keep my fingers crossed for you!

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Hi gillmac I'm a self employed driving instructor. No such luxuries for me I'm afraid. I'll check out web site you mentioned. Iv never been on benefits before and I don't know where to start. Doc has given me a sick note but iv been unable to organise anything yet as I'm stuck in hospital with syncope. Thanks for your help my friend shiona

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I imagine you have paid tax and NI for many years. If so even as a self-employed person you are entitled to ESA. This has two components – the contributory part at a meagre £73.10 (they think a person can live of this!) and an income related component (here they assume you get 5% return but cannot tell you where – I asked). It starts from the day you put in your claim – you can do so on the phone on 0800 0556688.

CAB can advise on other benefits.

I posted this two days ago but noticed it was not here today!.

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Hi Char try and keep your chin up mate I recon there should automatically be someone or an official organisation allocated to help fight our corner. It’s so stressful and unfair and such a common theme on here. I really do wish you best of luck and feel for you mate 🤞

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Maybe we should try an online petition or something to make things less stressful for hearties

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Hi and thanks, it is so stressful you feel like just giving up before even being assessed! I am so dreading it, they are coming between eleven and one tomorrow, I hope he or she comes sharp to get it over with, I will let you know how it goes char x

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Unfortunately DWP AKA Capita dont see anything to do with the heart as a disability. at my last home assessment the guy looked at our home and said nice house and then that my condition is similar to arthritis, l kid the not!

apparently l am not disabled enough and l have no proof that the symptoms of my condition exist. Yes I presented them with letters from one of the UK's leading Cardiologists and from what was mainly American knowledge, my GP after 10 years of this still cliams he has no knowledge.

But who do l blame and before a friends tries to shoot this down. I think they have made a start but are a long way from reaching were they should. If you look at NICE guidelines about heart diseases, it says a bit and then says see British heart Foundation. OK l will say it as I, l dont think that the BHF is fit for purpose, its better than it was but it refuses to meet our needs.

Heart disease is the 1st or 2nd biggest killer in the UK, the other is stroke, cancer doesnt even run a close 3rd, yet from the outside youed think it was first by a country mile?

Is it my responsibility to change the thinking of the likes of Capita or a funded BHF....no contest as it looks like im bussy for the next few years. They have to take responsibility or more resposibility and build on positive foundations

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Hi and thanks for your reply, I think heart failure and cardiomyopathies are a mystery to many GP's, most people have never heard of them and its very difficult to explain, what chance do we have when medics don't no, capita /atos have no idea what it's like to have a serious heart condition and be unable to work but they seem to have no problem with alcoholics and junkies, sad but true, I never brought this upon myself, don't smoke weigh 8 stone was reasonably fit, I am just looking for a little help with the things I can no longer manage, I feel I shouldn't have to beg for it either, it's so upsetting, char x

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Chaz l was 60 a few weeks ago and basically we are in the same boat as you, luckily for us we own our own house, so no expence there but we still have monthly bills and living on £900 per month is tight, thats made up of my wifes pension (taken out 3 years ago at 55) and some quickly depretiating investments. thats 10,800 yearly income so living on one minimum wage.

Cannot get other benefits because of some small investments.

Tell you what irrates me: irvine mitchell have an advert were unfortunately a guy has lost his leg but plays football at the end, bet you he gets full disability, if l were to play football id be iether in hospital or the funeral home, l am refused disability.

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It's shocking, really makes my blood boil when I think about it, not good for the dicky ticker! X

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Hang in there Char and try and keep your chin up, and don’t give up, I personally think that’s what they want us to do. It’s just so wrong it makes me sad and angry, I really do wish you all the best for tomorrow x

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Hi I have just say and completed a form "capability for work questionnaire" omg stressed or what... most of these questions are not relevant to us with heart problems! I have biscupid valve and severe aortic stenosis. Also fibromyalgia and osteoarthritis and hypothyroidism. I just know it will be rejected on the basis of there questions e.g. can I pick up a one pint carton ....? Etc etc. ....so stressed... as if we all Don t have enough to worry about with the thought of open heart surgery!

Sorry guys rant over!

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Hi rant away, I think it's disgusting the way we are being treated, the stress is awful and not good for us, I got help from a council run advice centre, the girl was brilliant, 30 years in the civil service and I couldn't fill out a form re my condition, shocking the government should not be allowed to get away with it, I hope you are keeping ok at the mo, tc char x

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Good luck today and thinking of you x

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Thank you xx

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be honest with the assessor but if they do come back and say no appeal as there is such a high percentage of incorrect claims being overturned it will be worth it. Before you get an appeal date you will get a reconsideration but all that will be in the letter - oh and always ask for a copy of your report as I found 34 errors in mine.........still awaiting an appeal date but it is not in court it is with a doctor and 2 other independant people prior to a tribunal. so first step, see what they send you if not happy request a reconsideration if still not happy request an appeal if still not happy then the next stage is tribunal. After the appeal though it may be worth contacting them to say that your condition has got worse since first applying and they will look at a new claim which will probably work in your favour. Long drawn out process but worth it if you are in need. I get standard rate PIP for both sections and still work but it is what my illnesses entitles me to so the same with you. Hope you get the results you want

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Hi and thanks, it is an awful process, presumably that way to put people off, the length of time it takes is awful tc char x

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Good luck today Char x

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I have finally had my appeal date - 19th September, I had my assessment 3rd December!!

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Hi that is absolutely shocking, no wonder some people don't even make it to the appeal it makes me so angry 😡 I don't really no how my assessment went, she was here for just over an hour! I suppose I will just have to wait for the dreaded letter from Dwp, my partner thought it went ok, I am not convinced, four to six weeks I will have to wait, I hope all goes well for your appeal, let me know how it goes, I will be thinking about you, take care char x

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thanks Char, will keep you informed - it has become an obsession with me now lol

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Thank you x

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How did it go?

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Hi, stressful, but I don't really no what she was thinking or typing! Just glad it's all over, for now, it will be four to six weeks before I hear back from dwp char x

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you have no knowledge of what they write and you cannot agree to what they write about what you say. they read bits out bits but not all. not good

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Agreed, I thought some of the questions were just down right ridiculous and nothing to do with a heart condition, I think they could do with asking about the actual disability people have instead of asking everyone the same questions, she would have made a good poker player! I suppose I will just have to bide my time until dwp send the letter, tc char x

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they are taught to follow 1, 2, 3, .......... etc. Not designed for the different ways heart conditions present. I have problems bending and go dizzy but that cannot be understood by them and they put, no evidance of going dizzy. As part of my condition I also faint and loose control of my waste deposit depart ment again they say no evedance. this is why l blame the BHF for not doing a good enough job because this is where they get the information, DWP refer toit as the leading souce of info

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Kel, I have already raised the followng issues with the BHF that heart patients live with a hidden disability and the inequality of not having free prescriptions and the challenge of applying for PIP etc.

We are not the only group of patients facing the unfairness of the system. The problem is the DWP not the BHF

We are innocent until proven guilty in this country except when you apply for a disability benefit!

I suggest you aim your anger at the DWP and raise your issues about the BHF directly with them yourself.

The BHF is at present seeking the views of patients so please make your views known to them in a constructive way.

The DWP of course now have an updated article about MVA though this is not the source of their information and decision making.

My assessment for early retirement due to ill health and PIP were both undertaken by ATOS. I submitted many letters including letters from the very same leading UK specialist as yours.

Interestingly he is now using the term MVA.

A patient and leading Cardiologist challenged him to do this to ensure consistent information about MVA.

Please do tell him about your difficulties about obtaining your PIP because he is also part of the problem along with all the other members of the medical profession who believe MVA and Vasospastic angina are not real heart conditions and as your Cardiologist refers to as a ' benign nuisance of a condition.'

Rant over!

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Milkfairy we have been here before. you seem to think that the BHF is doing enough l through personal experiance with there head poncho know that they will never do enough while people praise them for failure. yes they are better than they where but they still have a long way to go. dont rant until you know how they worked 5 years ago. a patient steering meeting to discus how we wanted them to proceed was a sham, decisions had already been made two weeks earlier so until youve been there dont preach. l have completed their their biased round of questions leading you to the end and then no recause to tell your needs.

Ok your beef with Pro Collins is your beef, im sorry if he didnt beleave you with regards to mvd and vasospasms yes he calls them vaso spasms and vaso angina which is what it is and he as called it this to me after my first appointment which initially he called syndrome X, l go to pain management and they still call it syndrome X.

I dont give a bulls dingaling what you want to call it, thats just periferal stuff. have you not heard the saying, you can call me whatevery you want as long as it not late for my dinner. Stop looking at the wood and start seeing the trees. like it or lump it the BHF have gained a responsibility whether they want it or not. trust me from what there head poncho said to me and how it was said they will not accept that.

yes there are more heart issues than just the interventionalist approach and if you accept this then each area no matter how rare as a level amount of time and money spent on it because thats what management with responsibility requires. For too long the BHF have abdicated out of this responsibility. What does it say at the bottom of NICE areas regarding heart issues? see BHF for more infor mation or something like that.

Finally in hopes that you will listen, Capita the french company that does pip look to the BHF for guidance on these diseases are you honestly telling me given the gentle stuff they give out (like take a CCB and your spasms stop, check it out before you come back because it is very rare l misslead) that Capita are going to recomend disability, like l said they have got better but until they accept responsibility then we the blobs have no chance.

is it your or my job to fight this out..... no we are just divided by what to call the dam disease, have a good think about whos pulling strings

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Actually I was there 5 years ago too.

We all suffer we have no choice about our pain but we can choose how we emotionally react to it.

We can constantly look back or try and move forward and bring about change....even you acknowledge that the BHF had moved on its approach too slow but changing still.

So once again I suggest rather than being outside the tent peeing in get in the tent and pee out!

Contact Heart Voices and give them your views.

I am off now for the start of my next psychological intervention as they say to help treat my post traumatic stress disorder due to my vasospastic angina not being treated appropriately despite having an admission plan which is approved by the head of cardiology. I have been left in severe pain on many occasions due to the lack of knowledge and understanding of the staff caring for me.

I blame no one.....I just keep trying to raise the awareness of Microvascular dysfunction leading to Microvascular angina and vasospastic angina.

There is no hierarchy of suffering we all suffer.

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Sorry milkfairy but after the going around the room start, l remember there being me with Syndrome x or l may have moved to small vessel disease by then, a 18 year old with money problems (no adult funding), a man who was desperate for information on is wifes diagnosis of cardiomyopathy and about 50 others who were associated with intervetion heart treatment ie blow it up, put a spring in or bypass it. and then there was the woman who ran the meeting and a few very jounior staff. so you are either a jounior staff member, the woman who was running it or by now the 23-24 young lady who was having adult funding issues? or you could be the head poncho who l spoke to after the meeting? This is how bad it was: the couple oppersite me had no idea that there was any other heart condition other than, blow it up, put a spring in or bypass it.

l have been in touch and offered to help and l have writen an artical for the mag and asked if my artical was not right/good enough that l am willing to be interviewed nothing was ever published and no one has ever been in contact, l am still waiting for a copy of the report on that days activity!

Like l have said to l do not knowingly lie or misslead.

I accept that as a lone voice l am here to be shot at but as soon as you start the agreeing to get in you've already lost and yes it is a game exactly as this is now.....me trying to confirm who you are. my name is Kelvin and l am notwell on inspire. l am kelvin on the prinzemetal face book group.....who are you?

best wishes Kelvin

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Kelvin,

You are talking about the past.

Perhaps try again and make your views known to the BHF.

We have to pay for our prescription, dental care and struggle for our disability benefits.

I as ever acknowledge your anger but directing it at an individual does not help our cause for better treatment.

That's me done again as I feel we are unable to have a constructive mutually respectful discussion.

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I 100% agree that the future is were we are heading and that is going to be better than yesterday but we need to know yesterday before we can manage tomorrow on all different levels.

at times we are arguing over the same issue its just different methods of getting there. l look at responsibilities, not the blame game but who should be doing what. In the past l have spoken about cardiologists in their own ivor towers because the system says knowledge and secrecy equals power and power equals money. them forgetting who they are doing it for costs us dearlyAnd yes they are doing it for a multitude of reasons but they seem to forget their actions effect us. I say this to cardiologists quite often: you consider yourselves to be the lancers leading the charge at at waterloo the americans have the 7th calvery coming over the hill just in the nick of time but here the laughable part, the lancers where prussan and the 7th got wiped out at little big horn.

so in the responsibility stakes cardiologists dont share. Like ive said BHF will not accept the responsibility it has generated inthat all heart issues should have equal billing regardless of personal beliefs or bias and then priorities can be set to where research funding is allocated.

I knocked Prof Collins for his artical in the mag, l thought it was a narrow minded artical on menstration and MVD/CAS, it was my wife who pointed out that this Collins's area and that l didnt know the brief he was given, Prof Kaski artical was of little benefit to us and again l do not know the brief. I did write to complain about the doctor who wrote in there about MVD/CAS an anethatist l think he was I also wrote to him.....nobody relied. l have writen to Collins about this web page I am going to do, (it is happening regardless) l want to Show that l have asked the right questions in the right areas. just so l can say told you so! l will write to the BHF about this, lets see if things have changed like you say?

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This is what I have written to the BHF:

Dear British Heart Foundation,

I said I would write to you because some one told me you are not the same BHF as you were 4-5 years ago, I am yet to be convinced?

I attended your members steering group meeting about 4 or 5 years ago and was disillusioned with your regime and your stance on heart conditions other than the interventionalist approach i.e. outside of, blow it up, put a spring in or bypass it, as I put it. And yes, I have been vocal about your lack of taking the responsibility by not treating all heart conditions equally and by not giving equal weight to each condition, I accept that priorities can then be placed so as to get the best research as needed.

At that meeting I quickly learnt that it was a useless exercise for us as the decisions had been taken the previous week making it a show event, so I bull dozed my way through making sure all remembered Syndrome X (MVD, SVD, CAS). I have noticed that some information has been published but I feel this has been inadequate and biased towards women rather than across the board making it a more serious condition, in the 5 years since, I have had two NSTEMI’s and in the region of 20 Acute Coronary Syndromes plus a ‘MVD TIA’, this sadly is the norm rather than the unusual, my latest twist is having vasovagal syncope on average once per week. Did you manage to help the guy who was begging for information about his wife’s Cardiomyopathy?

I wrote to you offering my assistance and did an article for the magazine or the offer to be interviewed regarding Microvascular Disease and Coronary Artery Spasms but I had no reply so I guessed that I had as I thought pushed too hard.

I am once again offering to help.

I am however looking for help with a project that is happening regardless, I am starting a webpage with information regarding Cardiac Syndrome X and Prinzemetal to use the old names or one of the many new names. I intend to catalogue research literature, ask doctors for experience testimonials and to get patient testimonials. I don’t want an open forum or a forum of any kind but a place were people can access freely, relevant information about their condition. Yes! I think this is your job but for what ever reason??? This should help sufferers when applying for PIP as the majority of sufferers don’t get PIP because it is said not to be a serious condition, likened to Arthritis at best! as I was told by Capita, again I believe this to be your job but for whatever reason??? Other heart Conditions have problems getting PIP and I see this coincidence as the British Heart Foundations lack of accepting responsibility.

My expectations are low to zero but a really do want to be proven wrong.

OK Milkfairy

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Great, I am glad that you have let the BHF know how you feel.

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It's breathlessness and dizzyness, because of my low blood pressure, I can't manage my housework or garden anymore, but not sure if she understood that, I can't afford to get help at the moment x

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Get help to fill in the form. You need someone who knows the key words to avoid and the correct terminology to use. Citizens Advice can help or refer you to someone who can.

I had a couple of failed attempts before succeeding.

It was then taken away after I had been in hospital for over 28 days. They seem to assume your bills all stop.

I was then harassed by late night phone calls and a letter threatening bailiffs coming to my home. I was in a coma at 28 days. They were annoyed I didn’t tell them immediately. I did tell them when I came round. It took them 5 months to demand repayment. Although I only got it for a few months it was worth the hassle. It paid for travelling to and from hospital and the hospital car park. Get help with the form and to sit in at the face to face.

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Hi and thanks for your reply, it beggers beyond belief that they can stop it just like that,with all the problems that comes with it, the government really have to look into the way we are treated, stress does not help a heart condition, tc char x

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Hi

It seems at the moment heart disease isn’t the #trending disease. It was a couple of years ago when it was never off the telly. Cancer on the other hand is the latest #trending disease and seems to get sympathetic responses from all quarters. Cancer is horrendous but in a lot of cases it can be cured whereas most heart problems can only be managed and will get worse.

My doctor won’t put me on esa because I can do office work and even if he did I would be taken off after being assessed.

At 58 years old I have too find a job within the office I can do. Find a employer to take on a inexperienced office worker with a heart problem. When I go to the job centre I’m treated like I’m there to rob them, all for about £70 per week.

But how much money will the government save with my pension?

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Hi, we are treated like second class citizens, they are making us practicaly beg for some help, I feel the same as you it is a hidden and very debilitating illness, in most cases with no cure, only a transplant would help me, I am 59 and they took my esa off me and told me to get a job, what bit of the, I can't work again, did they not understand,my GP was horrified, I had a good job and I was forced to give it up, I expected to be there till I got my pension at 66 another thing I could rant all day about, ragee, I am not holding my breath, but I will keep you posted take care char x

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I would ask a friend to attend and take notes. I heard on bbc radio tales from people whose report bore no resemblance to the facts.

Sadly they are private companies incentivized to paint a rosy picture and refuse valid claims.

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I agree that there must be measures to deal with fraudulent claims but private companies being paid incentives to reduce overall spend hits the innocent people trying to deal with disabling illnesses. The chancers know how to play the system and get away with it. The authorities have no idea how to deal with the players so hit the innocent. Sad but true.

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Hi all

I'm basically at my wits end which is why I've ended up here. Low and behold the DWP PIP conversation seems to be happening everywhere.

What are they doing? Other than inflicting unnecessary anxiety on those of us that need it the least.

Had Heart Transplant 1998 Harefield. Didnt know I was having one like (Last minute job) but I got over the shock and fortunately all was Amazing.

16 years later, need another transplant. 2014 Class 3 Heart Failure. CKD. 2015 ICD fitted.

Applied for PIP and got it. High on both.

July 7th I had a Face 2 face assessment at home.

It was awful, she was awful. Used to be a nurse apparently?? I told the assessor that I had already had a transplant in 98 to which she responded "did it work?"

Anyway, no surprise to me that I received a letter telling me PIP was stopped, All of it??

I've since had to write an absolutely huge letter in response to their decision called a Mandatory Reconsideration Notice.

I honestly am struggling everyday to get my head around it all.

There I was getting to grips Again with a sedentary lifestyle and trying to cope day to day.

Now on top of all that I have gone from being financially ok to not having enough for rent. If the decision doesn't get overturned I will also have to find somewhere else to live.

So many of us teetering on the edge while they queue up to give us a final push????

Tired of it.

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Hi and omg that is, I would swear if I could, awful I am not on the transplant list yet but I have been assessed and it is being considered for the future, the whole pip thing is horrendous I still have a couple of weeks before there decision is made but I am not holding my breath, just have to wait and see what they say, I hope they see sense and that you can get it restored, take care char xx

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I feel we must tell the BHF that we need more support regarding PIPs.

They need to campaign on our behalf about how unfair and degrading the whole process is.

Please complete the survey the BHF have posted recently and tell them.

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I actually mentioned this on they're survey. Even trying to get esa is a nightmare. Iv had 3 sick notes since HA in February and haven't submitted any of them as you have to call and get a form. That takes 2 wks to get through. Then you have to download form full it in and then phone again to make an appointment at benefits office. This took another week as I couldn't download form and as I was poorly couldn't get out to library to get help with it. Then another week to call bk for appointment date. Then to be given a date 2 wks later. I was determined to follow through this time as iv been using savings since February when unable to work and that needs to stop as funds are dwindling fast. I really despair for the future

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Hi Shoshov,

I am so sorry to read of your difficulties of trying to obtain your esa etc. None of us ask to be ill and yet when we ask for help which we genuinely need and are entitled to we are treated like we are liars and scroungers. How to kick us when we are down!

I also wrote about needing more support for PIPs etc. We need to keep telling the BHF that we need their support and influence to campaign for us.

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Absolutely milkfairy. I'm a driving instructor and can't work regularly due to fainting episodes due to pots. Iv never claimed anything all my life. I made a big deal about it on the questionnaire and suggested they could do more to make it easier. We'll see. Shiona

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Hi... well after stressing and sitting for ages filling form ESA50 Limited for work questionnaire over 15 days ago and posted 23rd August ( had to be back 30th August) I have received a letter from them today staying they have stopped my E.S.A!! Because they didnt receive my form by 30th! And therefore a decision maker has decided I am capable of work!! Really!! ... I have just had to hand notice in at my job( one to one carer to mentally and physically lady) as cardiologist not happy about the lifting etc with my aortic stenosis.

I have tried to ring today and just on hold! Will try tomorrow.

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Please say you got proof of posting!

There is absolutely no compassion in the system.

They all need to read JB Priestley's An Inspector calls before taking up the job.

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That's just awful, I really feel for you, the forms are horrendous and to be told it didn't get there on time is just awful, I had to phone them twice for an extended time for my pip form, it's shocking they can just stop your benefit, I hope you can get it sorted out, take care char xx

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Thanks chaz ....update. tried few times today still can't get through! Hope your ok.

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Hi, what a nightmare,I hope you can get them next week, Yeh ok at the mo, two weeks to go before dwp decision! Hmm char x

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Good luck. It took me 2 wks to get through to even get the form

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I was the opposite 🙄 I went for a lie down yesterday and I missed five phonecalls from them, I didn't even know they worked on a Saturday! Demented but fine thanks x

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Oh no way Chaz ! That's typical isnt it! I didn't even realise they open Saturday's. Looks like we will both be on the phone tomorrow😞

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Looks like it grrrr, I tried to phone them back yest, and yes you have guessed they were closed! I keep wondering why they phoned, spesh on a Saturday, I think I will wait for them to phone me, probs easier than trying to phone them

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Morning Chaz I just got through at last!!

Must be honest the lady was so lovely and helpful .I explained that I had sent letter in plenty of time and she looked and said award was still 'Live ' and they had received it in there department 4th September but they had automatically! Generated a letter on 3 September to me saying not received and was stopping award?? If you follow lol... she said it can take a good two weeks to get to the department and apologised for the stress it had caused. My next payment of 26 pound week ! Goes in 17th . Form goes to medical services now and they will be in touch. Also notified her that sadly I have had to hand notice in at my job under cardiologist advice. I should hopefully get a bit of holiday pay but I believe they dock my esa as it is income lol.

Have you had any news? Have good day x

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Hi good to hear you managed to speak to them and sorry to hear about your job, I also had to give mine up on the advice of my cardiologist, 30 years in the civil service, gutted, but I did get my pension, it's not a lot but at least it's something, six years till I get my state, raging about that, anyway back to dwp, I phoned yesterday and eventually got through, she wanted to know if I had been in hospital since I started my claim, I was sure the assessor had asked that, the answer was no, I then asked if she knew when I would hear about said claim, she said the award! Letter is in the post but the details wouldn't be on the system till today, so I can either phone back or wait, so it sounds promising but I think I will just wait for letter as getting through on the phone is a nightmare, I will keep you posted char x

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Hi Chaz oh yes sounds positive 😀yes please let me know fingers crossed x

I am 58 so got to wait 8 years for state pension. No pension due from job I am leaving but when 60 receive small pension from company I used to work for many years ago.

Have good afternoon x

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Evening Chaz how are you feeling x any news on award ? I have had a telephone call to go for my medical assessment interview tomorrow! Dreading it the way they treat us . Wish me luck ! Will update you when I hear how many points I get !! Take care x

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