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Prinzmetal variant angina caused by breathing in cold air. More than 28 days abroad?

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?
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?
Replies
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
SCOPE Volunteer Award Engaging Communities 2019
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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.
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.
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.
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?
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'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.
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.
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.
Apologies if I have missed this in one of your earlier posts..
Good luck - it will be very interesting to hear the final result...
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.
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.
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.
@clasship - Does this help? It relates to DLA not PIP I know.
It might not take things forward too much but hopefully it’s a starting point as to where to look....
“medical treatment” means medical, surgical or rehabilitative treatment (including any course or diet or regimen), and references to a person receiving or submitting to medical treatment are to be construed accordingly.”;
The Social Security (Disability Living Allowance, Attendance Allowance and Carer’s Allowance) (Amendment) Regulations 2013
I am not sure what to make of this. I know NHS incubators for babies use warm air, and my argument is the only difference is I'll be getting free warm air treatment, and free treatment is still treatment. I'll be relying on ATOS / DWP showing common decency and common sense, what can possibly go wrong?
If you look up 'treatment', 'regimen' etc in the dictionary they all seem to involve someone doing something, and that might be the problem. I can see that the baby in the incubator is being 'treated' but wouldn't personally describe your case as 'treatment' as it's a more passive thing.
Have any of your medical team said that you need to move abroad? That might help...
(apologies about my question about returning to the UK - I see now that you'd previously answered it!)
The stupid thing is, allowing me longer abroad won't cost the DWP anything more, but I am learning the DWP say no, now what's the question. Don't get me started on them allegedly earning 300 quid for every applicant they turn down, talk about 30 pieces of silver.
The choice seems to be - Live in UK, be ill, and claim benefit or live/spend a lot of time abroad, be well and as a consequence you can't claim benefit.
@clasship - please let us know what happens..
Take a look at the DoH report The Expert Patient - A New Approach to Chronic Disease Management for the 21st Century - published in August, 2001.
You are an Expert Patient, I said a great deal about myself as an Expert Patient, in response to Q5 on the PIP claim form.
I will post what I filled in (via a Word document) on the form, tomorrow.
I need to set up a keyboard to do this, as I current post on here, using a mini IPad and one finger typing.
Also there was a case of someone going abroad for health reasons and still got ESA., for support from their family.
There is no defined definition of what constitutes as “medical treatment”, for claimants of ESA, whilst abroad.
Have a good read of the above report, so you can see where I am coming from.
The DWP likes to lay down tram tracks for claimants to follow, but said claimants can and should devise their own flight & route plans, as these better meets the claimants needs.
That leaves the obvious only option, spend at least 8 months a year somewhere with tropical temperatures. That's exactly what I did for 14 years at no cost to the taxpayer, until I ran out of funds in july 2017. Once again staying abroad for up to 26 weeks is at no extra cost to the DWP, you would think this should be a no brainer.
Perhaps I should just consider myself fortunate if I survive the waterboarding and rat in a cage strapped to my face.
If you're successful, and the benefit stops when you leave the country, that's the time to spend good money on a lawyer....
atlas46 I look forward to your word doc when it's convenient for you.
If you want to you can record the assessment. Rules here:-
https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-1-the-assessment-process
My assessor said that I couldn't see it because 'it wasn't finished' or something similar.
I could only conclude that information would be added later - which is fine if it was her conclusions and recommendations but not if it was adding things to the interview that had already been completed.
Sadly it looks bent, even if it isn't!
I can understand that an assessor might not want to disclose their 'observations' if they were contrary to what the interviewee was claiming as that could easily lead to conflict.
The assessor I had wasn't very amenable and wouldn't let me see what she typed.
The report was so materially different to what happened at the assessment and, coupled with the fact that she wouldn't let me see it, I could only draw one conclusion...
I submitted a lot of medical evidence with actual PVA events / attacks requiring emergency services and hospitalisation and proof of the temperatures at the time and location, I should be feeling positive given that I have had documented heart attacks at +14c (+57f) but I don't, I don't want to jump the gun, however I fear I will have to go to MR and appeal, that's if that is the correct procedure, is it?
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I did receive a ESA50 form a few weeks ago and returned it, I completed one 2 years ago and receive ESA supported and at the time informed I would never have to apply again because as bunnies go, I am clearly not a well one. Would you have any thoughts on what's likely happening?
Because I have four main disabilities being so many heart attacks, strokes, the rare case of PVA and a bad back and more to be frank, I had a lot of evidence, and I submitted such a lot because I allowed for the need to go to tribunal, and there I trust it would all be read.
A chap who acted for me when I was homeless on my return from abroad has suggested the ESA50 form maybe an indication of a change to UC or perhaps the DWP are considering awarding me in addition to PIP the LCW or in my case as I receive ESA supported LCWRA. Is this possible?
What will save me a fortune in flight costs and allow me outside over winter is being allowed more than 28 days abroad, and that seems the DWP highest hurdle, albeit the evidence I submitted clearly shows I have suffered PVA heart attacks as a direct result of breathing in cold air. What will be will be, it can't be that long until I know what the verdict is for PIP and the 28 days abroad.
I can only surmise a legal expert could argue my case and win, but I have no funds, so for now much depends on the DM at DWP. That's unless I can be pointed towards free legal advice / face to face advice, can you help with this?
Have you ever had a needs assessment? You can refer yourself online and this could allow you to access money to pay a carer for this amount of time. I hope this helps!
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Interestingly despite me writing a letter to DWP and also IAS, and IAS calling me confirming it was OK to record the interview, when we arrived at the interview, the interviewer had not been informed we intended tape recording the interview, which we were actually allowed to record.
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I am still confused as ever, the DWP write as I live in sheltered accomodation they will not be back dating the Daily Living to my application date. I don't understand this as wonderful as the warden is, I receive no financial benefit at all from living in sheltered accomodation, I have personally pay for a person to do my shopping, clean the flat where I can't and do things I can't including cutting my toe nails. Despite being a medical priority to be moved to the ground floor, I still live on a first floor with stairs. Do I have a case to request the DL is backdated? If so is the correct procedure to request a MR?
The second issue is dealing with the reason for my original post, on 20.8.2019 I wrote to the DWP to request consent to spend 13 / 26 weeks abroad rather than the set 28 days so I can breathe in warm air, with a mountain of irrefutable medical and event evidence I suffer heart attacks breathing in air up to +14c (+57f), apart from one short phone call I made to the decision maker, after receiving a one page out of three page form of internal paperwork by error, I have had no consent, not even a reply? I am abroad until 26.12. 2019 happily breathing in warm air, what should I do now so I can book my next flight abroad because I don't want to keep booking for 28 days a time when I hope to be able to stay abroad for 13 / 26 weeks each time?
Once again I want to thank all those who have contributed to my post requesting help.
Regarding my 20.8.2019 request to spend 13 weeks abroad, and having no reply from DWP albeit they acknowledge I have requested permission, what should I do now?
From the stroke I am not the sharpest tool in the shed, If I understand correctly now I have been awarded PIP, it is possible for me to apply for LCWRA? Is correct? If so can you kindly advise me how I do this?
Once again Poppy your help is a life saver, thank you.
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Since returning back to the uK on 16.7.2017 I was getting just ESA supported and housing benefit, and as of this last Tuesday 10.12.2019 I've been awarded enhanced Daily living and enhanced Mobility. If I understand correctly the DL is not being back dated with the reason given "As you're in sheltered / supported housing we can't pay you the Daily Living part from 17.7.2019" This I am taking as the DL won't be back dated and this tallies with the payment made into my bank account.
"As you're in sheltered / supported housing we can't pay you the Daily Living part from 17.7.2019"
I can only think they think I am receiving care from a full time warden, which I am not, The warden works at several different council sheltered housing locations. I hope that helps.
"I can award you the enhanced rate of £87.65 to help you with your daily living needs from 16. July 2019 to 10th November 2020"
The warden is also confused as she has not come across this before either.
Annoyingly I can't find the article I read but I'll post a link if I come across it again...
Please if I can advise some organisations and help for you. I am one of the team of community champions. My friend @poppy123456 member of our team.
Understand you having problems with support with your illness and thought might be worth contacting any of these organisations.
I know you mentioned paying out of your ESA just a concern and care .
https://www.dailystrength.org./anginasupport
Angina and your condition a lot of support information relevant.
https:///www.stroke.org.uk.
Helpline 0303 3033 100
https://www.carenearme.co.uk.
Type in your postcode local services to help you.
https://www.ageuk.org.uk.
Helpline 0800 678 1602
Useful services, information including befriending. Some of these organisations have benefit advisors.
Please I hope that helps you.
Please take care
@thespiceman
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
Daily Strength has various illness and conditions it supports.
Must need to scroll down, senior moment this morning. Sometimes my memory and typing do not go together in unison.
https://www.dailystrength.org/group/angina/discussion/prinzmetal-angina
Other links is the DWP website.
https://www.gov.uk.
https://turn2us.org.uk.
Benefit advice and guidance plus anything else you could and might need.
Please if I can help with anything glad to do so.
Please take care.
@thespiceman
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes