Prinzmetal variant angina caused by breathing in cold air. More than 28 days abroad? — Scope | Disability forum
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Prinzmetal variant angina caused by breathing in cold air. More than 28 days abroad?

clasship
clasship Community member Posts: 76 Connected
edited July 2019 in PIP, DLA, and AA
I sufferer Prizemetal Variant Angina (PVA) from breathing in cold air, with cold air in my case up to and including +14c (57f). One problem is even ambulance crews and A&E doctors simply can't initially accept if at all that it's cold air up to +14c (57f) that has triggered PVA, an attack at this temperature is I am told unique. A PVA attack feels like acid has been poured into my lungs, but it's the blood vessel spasming from my lungs to my heart and has resulted in heart attacks. I have loads and loads of good evidence of events including police, ambulances and A&E hospital departments, letters from my cardiologist and GP doctors. I have now been habitually resident back in the UK for 104 weeks so I have just applied for PIP.

Question A. Has anyone ever heard of someone suffering similar PVA attacks in especially in temperatures of as high as +14c (57f)?  

Having just applied for PIP again, (in the past I lost my PIP application because I was spending too much time abroad to avoid PVA attacks) I am disabled from 19 heart attacks, a big stroke, and half a dozen smaller strokes.  I had arrhythmias, been de-fibbed but this Prinzmetal angina is actually my worst disability, because I can't go outside for most of the year, it's just too cold, it causes horrific attacks.

Question B.  Has anyone experience of claiming PIP for Prinzmetal angina caused by cold air? 

I am about to write to the DWP requesting I am allowed more than 28 days abroad (up to 12 weeks or even longer) so I can spend as much of the winter in warm temperatures (above +14c (57f).  From my failed PIP application a few years ago the DWP said they did not recognise warm air as a treatment, but I have found out that warm air is used to treat hyperthermia by mountain rescue teams, so it is a recognised treatment. 

Question C. Has anyone any experience of requesting longer than 28 days outside the UK ((without this affecting their benefits) for similar reasons as mine, that cold air causes very harmful medical events including heart attacks? 

Question D. Does anyone know of an organisation who would provide legal aid / legal advice should I need this if either my PIP application or my request for more than 28 days out the UK should fail? 


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Comments

  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @clasship   Pleased to meet you welcome.

    Thank you for joining and sharing.  Sorry to hear about your situation.

    I am one of the team of community champions. We guide and advise new members who join.

    I know there will be some one in our community be able to advise.  We do have members of our community or a member of our team may be advise you.

    Hopefully be in touch. Offer some answers.

    Please take care.

    @thespiceman

    Community Champion
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  • atlas46
    atlas46 Community member Posts: 826 Pioneering
    Hi @clasship

    A warm welcome.

    My understanding is you can live abroad for 13 weeks, this can be extended to 26 weeks, if you are receiving medical treatment and get PIP.

    You need to speak to DWP, for more details about your plans.

    In respect of legal aid, there is no support for claiming benefits, you should seek welfare rights advice from your local CAB.

    Not sure how things will be after BREXIT, about medical treatment you might get living abroad.

    Hope this helps.
  • clasship
    clasship Community member Posts: 76 Connected
    atlas46, Many thanks for your comment. I think my biggest problem in trying to spend in excess of 28 days abroad in a warm climate, is that previously the ATOS / DWP stated they had never considered living in a warm climate a treatment, Clearly warm air is, it's used as a treatment in incubators etc and there is one portable device that mountain rescue teams use, but it's not available to the public.

    That said maybe my biggest problem is I suffer PVA at extraordinary high temperatures up to +14c, so they won't truly understand my case and dilema, few do. I just hope someone at DWP don't simply just take the easy option of saying no! IfI they do, I will really need some legal advice and I am far from convinced my local CAB can offer this, but perhaps they can. 
  • atlas46
    atlas46 Community member Posts: 826 Pioneering
    Hi @clasship

    Just to reiterate you can spend up to 13 weeks abroad, irrespective of any medical issue, whilst on PIP.

    I have health problems and we use to spend winter in Tenerife for two months, I checked with DWP as I was on DLA at the time.

    The DWP we’re not interested, that a warm climate would improve my health and well being.

    If we could have afforded it, we would have stayed the full 13 weeks.

    Check the current rules, via the PIP helpline.

    I have not heard of PVA and I have a clinical background, so you will struggle with DWP, as they are civil servants.

    Be interested to know which country, you are thinking about.

    Keep us updated.
  • clasship
    clasship Community member Posts: 76 Connected
    I now see on Age UK the following confirming what you are saying, so thank you. 
    8.6 Going abroad If you go abroad temporarily and intend to return within 52 weeks, your PIP entitlement continues for up to 13 weeks. If you go abroad specifically to receive medical treatment, PIP can continue for up to 26 weeks.

    I claim ESA and housing benefit, having returned from living 14 years abroad to avoid PVA attacks I came back with 33 pence. The last 5 years were in Thailand being the right temperature, safe, cheap and easy to live there with a retirement visa. Nowhere in the EU was actually warm enough on paper, not even the Canaries in December / January. 

    Where I got confused (apart from having a stroke) last year I spoke to DWP and they informed me I could not spend more than 28 days abroad without ESA and I think housing benefit being stopped. With ESA I should add I am considered never able to work. Having never claimed any benefit before, and always owning my own home, I am not really up to speed on benefits etc.

    Question. Does anyone know if I am granted PIP, will I be allowed to spend more than 28 days abroad,and not lose my ESA and housing benefit? 
  • poppy123456
    poppy123456 Community member Posts: 53,359 Disability Gamechanger
    Hi,

    If you've recently returned from living abroad then to be eligible to claim PIP then you must have lived in the UK for 2 out of the last 3 years. If you haven't then you won't be able to claim. See link for confirmation.

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • poppy123456
    poppy123456 Community member Posts: 53,359 Disability Gamechanger
    The rules for ESA are housing benefit do not change when traveling abroad even with a PIP award.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • clasship
    clasship Community member Posts: 76 Connected
    I returned to the UK to habitually live in UK in July 2017, hence I have just applied for PIP. The good news is I now know I can spend at least 12 weeks abroad, maybe 26 weeks. Now I would love to know if I can spend this time abroad and not lose my housing benefit and ESA?
  • clasship
    clasship Community member Posts: 76 Connected
    poppy123456  My stroke has made me a bit slow to understand. Does that mean I will be able to spend 12 or maybe 26 weeks abroad and not lose my housing benefit and ESA? 
  • poppy123456
    poppy123456 Community member Posts: 53,359 Disability Gamechanger
    No, i'm afraid not. Income Related ESA  is paid for a maximum 4 weeks when traveling abroad. Contributions based ESA can be paid for up to 26 weeks in certain EU countries.

    Housing benefit is paid for 4 weeks but in some situations can be paid for longer, but you'll need to speak to your local council for this.

    Confirmation in both links.



    Regarding the PIP, i have to agree with the others in that going abroad for the warmer weather may not be a good enough reason to claim the PIP for longer than 13 weeks. If it was then a lot of people would be doing this.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • clasship
    clasship Community member Posts: 76 Connected
    Thank you all for your time writing all that information.

    I'll click on the links and find out what can be done on the housing benefit and ESA front. I'll contact the DWP to request I can spend 26 weeks abroad, but if I can not claim housing benefit after 28 days then my wings will be clipped to 28 days. 

    Once again many thanks for everyone's help. 
  • poppy123456
    poppy123456 Community member Posts: 53,359 Disability Gamechanger
    One other thing, if you did go for more than 28 days and your ESA and housing benefit stop, then you won't be able to re-claim any of these on your return because all areas are now a full universal credit area and have been since December 2018, so it will be this you'll need to claim.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • clasship
    clasship Community member Posts: 76 Connected
    OK,, again many, thanks for that extra info, that's very important.

    I think I may be able to be abroad for longer than 28 days and claim housing benefit, as long as they accept my PVA needs, I certainly have many documented events requiring ambulance, hospitals and Dr's letters confirming how bad my PVA is due to breathing in cold air up to +14c.  The ESA looks a bit tricky, but I am going to work on this. 
  • poppy123456
    poppy123456 Community member Posts: 53,359 Disability Gamechanger
    No problem. Even if that was possible, there will still be an issue with the ESA when you return because new claims aren't possible, claiming UC on return will mean that your housing benefit transfers to UC.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • clasship
    clasship Community member Posts: 76 Connected
    This may help others. I had confirmation from CAB (as below) it is quite possible to spend up to 26 weeks abroad without affecting PIP, ESA and Housing benefit payments if one can make a case which I should be able to do with my extensive evidence of PVA events and temperatures they occurred at. 

    Hi Timothy,
    You appear to have done your research and I can confirm the ESA payment is for up to 26 weeks if you are abroad for medical treatment. Your problem may be convincing the local job center that warm air is a treatment which requires you to go abroad - however, you have supporting documents from GP and Consultant so that should be sufficient.

    Again, with Housing benefit, you may be able to go abroad for up to 26 weeks if it's for medical treatment. I suggest that once DWP accept that this is medical treatment, you can put the same case to your housing benefit provider.

     
  • cristobal
    cristobal Community member Posts: 984 Disability Gamechanger
    @clasship - will you not have difficulty explaining that you need to be in a warm climate when you have returned to the UK from living abroad?

     Apologies if I have missed this in one of your earlier posts..

    Good luck - it will be very interesting to hear the final result...
  • clasship
    clasship Community member Posts: 76 Connected
    I lived abroad for 14 years to avoid PVA, but I flew back twice a year when I had an ICD fitted, originally these 6 months check ups were in January and February, but as soon as I landed in January I had an attack and off to hospital from the airport, so these were changed to April and September. it's still too cold in April and September and and I have had events at airports in those months where ambulances to hospitals were required, so it's all documented in letters I have. I've walked off the plane and within seconds I'm on the floor in agony, and I mean abject agoney. To counter this I bought a campers 12 volt hair dryer and a 12v battery, and use this to breath warm air when I am outside for c 8 months a year, weird or what, but it beats having heart attacks, which I have had from cold air up to +14c. 

    I have many letters I have written to airlines requesting permission to carry a gel battery on board (As I need to get on the warm aircraft, not that they ever understand my medical dilemma), My cardiologist, GP Dr and sheltered housing warden all know I use the hair dryer and I have quite a few letters from GP's informing the airlines why I need the hair dryer. I have letters from attacks in other locations in the UK as well. 

    My worry is ATOS and DWP won't understand my case, not least because I appear to be a one off unique case, I've had ambulance crews pick me up from floor, take me to the ambulance and leave the doors open whilst they fill in the paperwork, this despite reading a medical information sheet I always carry ,with me clearly telling them about my PVA being caused by cold air.

    I know it's bizarre, but in my PIP application I submitted gave the time, date, location, and hospital I was taken to with a link to a website that gives the temperature of that hour at the location, you would think my case is waterproof, but from tales I hear of ATOS and DWP, I don't know what they will make of it. I've had 19 heart attacks (19% ejection fraction) cardiologist wanted to give me a transplant, but It's not permitted if one has had a stroke), a big stroke, arrhythmias and been defibbed to death, or is that back to life? I have a very bad back from the stroke, but I have no confidence I will be awarded PIP, simply from the horror stories I am now hearing. 


  • cristobal
    cristobal Community member Posts: 984 Disability Gamechanger
    " I have no confidence I will be awarded PIP, simply from the horror stories I am now hearing."

    @clasship - I don't disagree with what you say and I'm not sure that I can help much further as you might be best getting legal advice I think.

    The two obvious issues seem to be 'treatment' which suggests someone doing something, and the fact that you have returned to the UK after years abroad even though it makes you ill. 

    Good luck - it's forecast to be record highs tomorrow!




  • clasship
    clasship Community member Posts: 76 Connected
    I returned to the UK after 14 years mainly abroad with 33 pence, I had run out of funds, I had been self funding all those 14 years, I had sold my hose etc. In 2002 I was told I would not last 2 years by my rehab heart nurse, my GPP said I would not last 6 months in 2013, in 2015 I had countless arrhythmias and flew back with a ICD that had enough battery left for perhaps one more de-fib, once again I was taken from Heathrow by ambulance as I had a PVA attack as soon as I stepped off the aircraft, all documented. I know this sounds too much to have happened, it's 100% true and documented, I should write a book, there is so much more to tell. 

    Yes it's the treatment part that ATOS or DWP will possibly argue about, but in my case it's documented, and I have researched that warm air is used as treatment in the uK buy the NHS. The fact the treatment is free abroad is a bonus for me, but I bet I end up needing legal representation. So I am all ears on any help on the legal front.  
  • atlas46
    atlas46 Community member Posts: 826 Pioneering
    Hi @clasship

    You would best be served by seeking Welfare Rights advice, say from your local CAB, to assist you.

    You could also speak with the British Heart Foundation, they might be able to assist.

    Every claim is different and no one in this community can predict what the outcome will be.

    What is known, obtaining good welfare rights, does increase chances of a positive outcome. This is even more so if your claim is appealed at the tribunal.

    Hope this helps.

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