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

clasship

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? 

thespiceman

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

atlas46

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

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

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

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

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.

https://www.gov.uk/pip/eligibility

poppy123456

The rules for ESA are housing benefit do not change when traveling abroad even with a PIP award.

clasship

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

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

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.

https://england.shelter.org.uk/housing_advice/benefits/housing_benefit_while_away_from_home

https://www.gov.uk/claim-benefits-abroad/illness-injury-benefits

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.

clasship

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

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.

clasship

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

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.

clasship

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

@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

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

" 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

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

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.

clasship

Thanks for the advice, I will take it and do what you suggest. 

cristobal

@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

clasship

Thanks,

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?

cristobal

@clasship - I think the issue is 'treatment' whether it's free or otherwise...

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!)

clasship

Yes three  GP's have written letters to the airlines explaining my PVA was better served in temperatures abroad because I suffered PVA from cold air. Two GP's wrote letters when BA would not fly me after I held my breath getting from the taxi into the terminal, but the air was too cold inside by the doors and I had a PVA attack. two hours later in the corridor (which of course was full of cold air which caused another attack) to the aircraft I got right up to the aircraft door sitting in a wheelchair, and the captain came out and told me to come back the following day with a letter from my GP stating I was fit to fly, which I did. I need a legal mind to state my case, that's for sure, I have all the written evidence, that's also for sure.

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. 

kentpete123

Does your condition effect you while your abroad 

clasship

I have never, ever suffered PVA in a country with a climate +15c. 

kentpete123

Ok so playing devil's advocate if you are away for 26 weeks and then back here for the summer could the dwp not argue that your condition effects you less than 50% of the time in a 12 month period and lower or stop your claim?

cristobal

kentpete123 said:

Ok so playing devil's advocate if you are away for 26 weeks and then back here for the summer could the dwp not argue that your condition effects you less than 50% of the time in a 12 month period and lower or stop your claim?

@ kentpete123 - I'd never thought about that...

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..

kentpete123

I can see them looking at it that way unfortunately

atlas46

Hi @clasship

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.

clasship

In my application for PIP I submitted a temperature graph as below that clearly shows that the average temperature is too cold for me 8 months of the year. I had one event witnessed by my warden on 10 JUNE 2019 when it was +12c. There will be days in the 8 months when it is sometimes +15c  however there are days in summer when its not, so I think my 8 months a year (66% of the year) is a fair estimate. I also suffer from the damage of 19 heart attacks, 2 x by-passes failed, my big stroke and really bad back, so living abroad won't be spent windsurfing. I;'ll do as I do here, sleep a lot in the day but when I have the energy to go out, not have to take my hair dryer and battery to breathe from. As bunnies go, I am not a well one. 

clasship

atlas46 I look forward to reading your word document, and thank you for your efforts and everyone's efforts. 

clasship

I should add that one GP confirmed there are no PORTABLE medical devices that supply dehumidified warm air available to the public. He stated my battery powered hair dryer was not suitable not least because the air is not dehumidified. My research tells me there is a device that USA mountain rescuers use, but it's very complicated and not available to the public. So I can't be given any portable device to allow me to go outside. However it's evidence warm air is a treatment, just as incubators are. This is where I need legal advice, I may need to argue a legal case, you would hope not, but I am dealing with ATOS and DWP. 

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. 

cristobal

@clasship - personally I'd wait and see what happens with your claim.

If you're successful, and the benefit stops when you leave the country, that's the time to spend good money on a lawyer....

clasship

atlas46 I look forward to your word doc when it's convenient for you. 

clasship

Is the 12 week rule 12 weeks in anyone year, or could I go for two 12 weeks trips covering winter? 

clasship

Can I insist I read what the ATOS / IAS assessor has just written at the assessment? If yes, can anyone supply me with the rules / regulations I can quote to the assessor. 

cristobal

@clasship - no you can't.

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

clasship

Thank you, actually I ordered two tape recorders and they arrived today. I was hoping I could read what was being written at the time to save MR and an appeal. Call me a cynic, but I am so shocked to read how some assessors are so economical with the truth of what actually happened at the assessment. 

cristobal

@clasship..... I don't believe that neither the assessors nor DWP draw a distinction between the assessment/ interview etc and the report that they subsequently produce. Obviously once the assessment has finished then that's it - it should really be saved in a un-editable format.

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!

cristobal

@ilovecats - thanks..I think that makes a lot of sense.

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...

clasship

Thank you so much for your replies. I suffer the  prinzmetal variant angina (PVA) that stops me going out for a good 8 months a year, with a few of my heart attacks due to PVA. I had 19 heart attacks total, non small, two by-passes failed, would have had a heart transplant, but that is not permissible because I had a major stroke. From that stroke 16 years ago I have chronic back pain, and yet I have zero confidence I will be granted PIP. Adding insult to injury and what really digs at me, I used to be quite successful and just the last cheque I wrote the taxman was for over 300k....arghhhhhhhhhhhhhhhh. 

clasship

The latest news is that after 6 weeks and 6 days I had a call from the decision maker after I received one page of what I believe to be an internal form LT54 (DMACR) and rang the DWP on Friday asking had they meant to send just that page with no covering letter to me?  Interestingly the DWP guy I called and spoke to on Friday who was not part of the team dealing with my request, confirmed the DWP do allow people suffering illnesses as I do that are quite severe and benefit from breathing in warm air, not that the DM was admitting to this, so I await the decision from said DM. The same DWP guy also told me there was no regulation as such determining an extension to the 28 day rule to 13 / 26 weeks, which does not surprise me as I could not find such a regulation. Is there anyone out there who knows better?

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? 

Chloe_Scope

Thank you for taking the time to update us @clasship, I hope you are not waiting much longer. 

clasship

It's been 13 weeks and no face to face PIP waterboarding assessment. I can only assume I won't be interviewed and on that basis if anyone knows anyone who would like 2 x brand new mains /  battery cassette tape recorders, with 8 x brand new batteries and 5 x brand new 90 minute cassette tapes, then I just put them up for sale. They are on a famous auction site Item #: 254391592910 starting bid being £35 including shipping, a bargain may I add, especially if they help ensure someone is awarded their claim. It's possible my request to record the assessment had a beneficial influence on my claim, and / or  maybe these are lucky tape recorders, only time will tell, but I think it's vital to record your assessment.   

poppy123456

clasship said:

It's been 13 weeks and no face to face PIP waterboarding assessment. I can only assume I won't be interviewed and on that basis if anyone knows anyone who would like 2 x brand new mains /  battery cassette tape recorders, with 8 x brand new batteries and 5 x brand new 90 minute cassette tapes, then I just put them up for sale. They are on a famous auction site Item #: 254391592910 starting bid being £35 including shipping, a bargain may I add, especially if they help ensure someone is awarded their claim. It's possible my request to record the assessment had a beneficial influence on my claim, and / or  maybe these are lucky tape recorders, only time will tell, but I think it's vital to record your assessment.   

What makes you think you don't need a face to face assessment? Have you been told this? or is it because of the 13 week wait is making you think you don't need one? if it's this then there's no timescales for waiting times for the assessments, some are waiting several months.

If you have been told one isn't needed then i'm afraid you won't be able to sell your items on scope because it's not allowed. Gumtree or facebook is a good place to start.

clasship

I am assuming after 13 weeks I won't have a face to face assessment. 

poppy123456

Please don't assume this because as advised waiting times do vary and it's very rare to have a paper based assessment. Most people have face to face assessments. You can ring DWP for an update and they'll tell you if a report has been returned, if it hasn't then you'll know there's a backlog.

clasship

Thank you for your advice, I have read claimants are now waiting 14 weeks for the PIP decision. I submitted 70 / 80 pages of strong evidence including a care plan stating if I declined any further my next step was into a care home and cardiologist stating my walking exercise tolerance was 40-50 feet. It's not just PVA, but 19 heart attacks and a stroke etc that made me feel perhaps no face to face interview was necessary, not after all this time. 

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?  

poppy123456

What you read is just a guide and nothing more. Backlogs are just part of the reason a decision/waiting times can be delayed. I honestly think you're reading far too much into this. If you wrote a mobile number down on the form when you filled it in you will receive updates through out your claim. Once the report has been returned to DWP you will receive a text message, if no number was put on the form you'll receive a letter. If none of these have been received you need to expect a face to face assessment.

I must admit 70-80 pages of evidence is rather a lot and you may find that a lot of that won't be read. Very often less is more when sending evidence.

The ESA50 form you received a few weeks ago is a totally different benefit to PIP. Most people also need another face to face assessment for this too so expect one of those. As with the PIP claim, if no face to face assessment is needed then it's a bonus. It's rare to have a paper based assessment for this too.

If you want more information about your PIP claim then of course you can ring DWP and they will tell you if a report has been returned. If it hasn't then they won't be able to give you any updates and you'll need to ring the health assessment providers to ask them.

clasship

Once again thank you for your advice, and I do value it. I may well be reading too much into this, I really don't understand the benefit system, at all. 

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? 

poppy123456

You're welcome.

The ESA50 form is a review of your existing claim. It's nothing to do with a change to UC or your PIP claim.

Most people claiming ESA has reviews and these can be anytime from 3 months. The only people that don't have reviews are those that are placed into the severe conditions group. This is new rules that were introduced in October 2017 if you're placed into this group after this next reassessment then it will tell you on the decision letter that no future reassessments are needed. However, if you were/are placed into the Support Group through regulation 35 then you won't be placed into the severe conditions group. To gain entry into this group you must have access to the Support Group through one of the Support Group descriptors. See link. https://www.disabilityrightsuk.org/news/2017/october/guidance-work-capability-assessment-reassessment-published#navigation

clasship

I arrived back in the UK in July 2017, I was awarded ESA after the qualifying 3 month period, making my award October 2017. I guess in time I will find out, I am happy enough to wait for the award. I am pretty sure I am considered suitable for LCWRA. Is it possible I person who is awarded PIP can also be awarded LCW or LCWRA? 

poppy123456

PIP and LCW/LCWRA are totally different benefits with totally different criteria and receiving the one doesn't automatically entitle you to receive the other.

People claim PIP and work.

clasship

Thanks, but can one receive both if one meets the criteria? 

poppy123456

Yes of course because they're totally different benefits.

clasship

The plot thickens, it's all new to me. Thank you for your advice, it's very much appreciated.

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.  

poppy123456

No problem. Unfortunately i'm unable to help with the 28 day rule and claiming benefits that will be up to a decision maker to decide. Good luck with the PIP and ESA assessments.

clasship

Poppy123456, You should be on stage as a clairvoyant, after 13 and a half weeks, I have been invited to attend a face to face PIP assessment, so I'll be keeping and using the two cassette tape recorders. 

poppy123456

lol i doubt that. It really wasn't difficult to guess that you would most likely have a face to face assessment because most people have them and there's no timescales, as i advised. Some wait weeks, while others wait months.

Good luck with the assessment and don't forget a week after that you can ring DWP to request a copy of the assessment report. This will give you some idea what the decision is likely to be because they mostly go with the report.

clasship

I hear what you say about the DWP going with the assessment which worries me after hearing the horror stories. I submitted a cardiologists discharge note from a few years back stating my exercise tolerance was 40-50 feet and a 2015 care plan stating if I got any worse (words to that effect) I would need to live in a care home, and I have suffered major events since. You would think I should feel confident being awarded PIP and enhanced at that, but I don't, I fear I'll have to go to a tribunal and that will take up to a year!  On the basis I have had 19 heart attacks over 19 years, but not had one in the last two years, could I be forgiven in thinking it is a war of attrition on claimants? 

poppy123456

Did you send more recent evidence to backup the evidence from 2015?

Whether you're awarded will totally depend on how your conditions affect you, as PIP isn't awarded based on a diagnosis.

Yes, reading the horror stories certainly doesn't help because you'll mostly only ever read the bad ones. Lots of people successfully claim PIP without any problems at all but we rarely hear the good stories. This is because if someone's had a decision they're happy with they have no questions to ask so we don't hear their story.

clasship

What is peeving me off is there is still no decision to my request back on 20.8.2019 to spend more than 28 days abroad for medical reasons being cold air causes me documented heart attacks (Prizemata Variant Angina). If the DWP don't agree  / give their consent without affecting my ESA / PIP to the 13 weeks or 26 weeks, what is the procedure to have the decision overturned?  

poppy123456

If they refuse your request to receive benefits for more than 28 days while out of the country then your next step as always is the MR followed by Tribunal. If you are refused then before requesting the MR you need to get expert face to face advice because usually to receive a benefit for 13 or 26 weeks outside of the country you must be receiving medical treatment. As you're not receiving medical treatment during your time abroad then it may not be possible to receive those benefits.

clasship

In my case, cold air is the direct cause of my Prinzmetal Variant Angina (PVA), there is no debate on the cause. Warm air prevents attacks and also is a treatment to stop the spasms which have caused heart attacks, hence I can only go outside breathing in warm air from my 12 volt hair dryer powered by a 12 volt battery, and It's all documented with letters from several GP's. My case is 100% genuine. 

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?   

poppy123456

I never said you weren't genuine but it may not be classed as receiving treatment to be able to continue claiming benefits while abroad.

You definitely do not need to pay for legal advice. When i mentioned expert face to face advice i meant from welfare rights or a law centre both of which are free. https://advicelocal.uk/

At the moment all you can do is wait for the decision and there's no timescales for any decision.

clasship

I had my PIP assessment yesterday, all seemed to go well, only time will tell. One issue came up I had never thought about, I pay for a lady to do the shopping for me, clean places I can't which is basically anything within 18" above the ground, put the rubbish out and do things like cut my toenails etc. Gill the lady who does the above work has given me notice she won't do this anymore from the end of the month, for personal reasons. My brother who was with me thinks the IAS interviewer was surprised I was paying for this myself, and that I had never had anyone come to me to evaluate my needs, I bought all the appliances for  disabilities myself. Is it possible my brother could receive any payment if he decided to do the work Gill is doing? I looked up Carers Allowance, but 35 hours a week seems too much time, I am guessing 8 hours a week more appropriate. Does anyone know if there is a financial benefit of any kind that might suit my needs? 

Chloe_Scope

Hi @clasship, I'm glad the assessment went okay!

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!

clasship

Chloe, Thanks for your help, no I never had a needs assessment. In your opinion is it best to see if anything comes from the PIP assessment interview, my brother thinks something might come from that other than just the PIP, or should I apply now using the link you gave. My thoughts are maybe the DWP are working on something as I was asked to fill in a ESA 50 form a  month back. I was told when I submitted the one in 2017  and was given ESA supported that I would never have to fill that form again as it's considered and accepted I will never improve, or am I deluding myself? I don't really understand the benefits system.

poppy123456

ESA and PIP are different benefits with different criteria. For ESA they can reassess you anytime from 3 months. The only ones that are exempt for future reassessments are those that are placed into the severe conditions group and to be placed into this group there's very specific criteria.

For the needs assessment you can refer yourself with the link above.  For the needs assessment they will also asses you and give you any aids/adaptions that you need to help you with your daily life.

This has nothing to do with the PIP assessment and nothing other than possibly being awarded PIP would be achieved from this.

For the PIP, if you wait a week then ring DWP to request a copy of the assessment report. This will give you some idea what the decision is likely to be because they mostly go with the report.

clasship

poppy123456, Once again thank you for your advice and input. By the way I posted a signed for letter Monday to DWP requesting a copy of the assessment report. I also  requested my brother is sent a copy of all correspondence including the decision to my request  back on 20. 8.2019  to spend more than 28 days abroad as I will be away in December escaping the cold UK because I suffer PVA. I think I will wait until my return  before requesting a needs assessment. 

 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. 

Chloe_Scope

Hi @clasship, you are able to apply for a needs assessment while waiting for PIP as they are completely separate. I hope this helps.

clasship

Chloe, Thanks, leaving until my return from 28 days is more to do with me being away. Should the DWP allow me more than 28 days abroad, and hopefully I will know in a few weeks, I will be on the next plane abroad again, so I think it's best I wait for now. 

Chloe_Scope

That's understandable @clasship! I hope you find out soon.  

clasship

PIP PIP hooray, following my PIP application on 16.7.2019, on 10.12.2019  I was finally awarded the enhanced rate for Daily Living and Mobility. So a big thank you to those who contributed help and information.

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. 

poppy123456

Great news. To be honest i've never heard of anyone not having PIP backdated because they live in sheltered accomodation. If your claim was a first claim and you were transferring from DLA then it should be backdated to the date you rang to start your claim, unless you were in hospital for more than 28 days at anytime since applying.

Your question about being abroad, as advised through out the thread, it's 13 weeks for PIP anything longer than that and you need to ring DWP to report the changes. You can only claim for up to 26 weeks if you're abroad for medical treatment.

For any other benefits it's 28 days and you'll need to ring DWP after this, if you plan on staying abroad for any longer.

clasship

Thanks for you info, I was not transferred from DLA, I first applied for PIP in 2013 and was turned down as I was living abroad to breathe in warm air, so I moved back to the UK on 16.7.2017.   I applied for PIP after habitually living back in the UK for the requires 104 weeks on 16.7.2019. So what should I do about the DL not being backdated? Do I simply write to them or request a MR?

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. 

poppy123456

You're welcome,

Regarding your daily living award, i've just done some research, it depends how your accommodation is paid for if it is funded by the NHS or the Local Authority then the PIP daily living is not payable, it you self fund then it should be. See this here on rightsnet.https://www.rightsnet.org.uk/forums/viewthread/4360/#33873

May i ask if you're receiving the PIP daily living award money going forward? Or is it just not being backdated?

Your PIP award will not have any relevance to a LCWRA award because they are different benefits with different criteria, although there's no harm in sending the PIP award to support any future claim.

Chloe_Scope

Hi @clasship, congratulation on your PIP award! I hope @poppy123456 has very kindly been able to clarify things for you. If there is anything else we can do then please do let us know.

clasship

Poppy, I live in a local council sheltered housing with a part time warden who looks after sever sites within the local council. So there is no full time live in warden which is perhaps what the DWP have assumed.

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. 

poppy123456

If you disagree with the decision then you need to request the MR and you have 1 month from the date of the decision to do this.

I know you said it's not being backdated but you still haven't answered my question, are they going to be paying you the daily living award in future payments or have then stopped this as well because of living in support housing?

clasship

Poppy, I am in Asia on my 28 day holiday, I only have the information the warden sent me so I have given you what I know. There obviously are other pages I was not sent. I have been awarded both components and the DWP write confirming I will receive both Daily Living and Mobility and the state in writing the enhanced rates being £87.65 Daily living, £61.20 Mobility and £128.48 ESA. They also confirm my Housing Benefit and Council Tax Support remain the same as it always was. I can only assume they are not backdating the DL component for the reason they gave which is:

"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.

poppy123456

 I would advise you to fully expect them not to be paying you any of the daily living award at all, including future payments because it wouldn't make sense for them not to back date it and then you receive the payments going forward. Take note of the wording we can't pay you the Daily Living part from 17.7.2019" Regardless of the award, they are saying there's no payment because of where you live.

When you arrive home you'll be able to look at the letter to see exactly what it says and then request the MR within 1 month of the date of the decision.

clasship

They wrote in the paragraph above the we can't pay you.......:
"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. 

poppy123456

Yes, they have awarded you but take note of the "we can't pay you" this means that they have decided you can't be paid the daily living part at all. You will receive the mobility part payment only.

clasship

So claimants who live in sheltered housing don't actually receive Daily Living? That's news to me and the warden where i live. If this is so, clearly I should move out of sheltered accommodation as I receive no physical or financial help whatsoever living where iIdo. 

poppy123456

Have you read the link i posted in a previous comment above? If you haven't then please do and it will give you all the advice you need. Then once you return home you'll be able to request the MR decision. If it's outside of the 1 month deadline then you'll need good reason why you didn't request it within the first month.

clasship

Thank you, I have read the link, but having a stroke means I don't always fully understand. I think as I  live in the council sheltered accommodation, which provides a part time warden, and alarm cords in every room but nothing else. The warden informs me others receive Daily Living so hopefully I should win a MR which I will submit as soon as I return from holiday. I am surprised at this DWP decision as I made it clear at the assessment which was recorded, I pay a private person to do my shopping, clean certain areas and do things i can't like cut my toenails. On the above info should I feel confident I should receive the DL after a MR? 

poppy123456

You won't be the only person this has happened to. When you return home a simple phone call to DWP to point out that it's sheltered accommodation and not a nursing/care home and you pay for all your services maybe enough. Hopefully an MR won't be needed.

clasship

Poppy, Thank you for your endless help and advice, sorry to press you on this point but I am so worried now. In your opinion and your knowledge, is it likely that I will receive the Daily Living component backdated or not once I make it clear in a phone call or otherwise, that I live in sheltered housing and not a care home and have always paid a private individual from my own ESA funds for any physical help such as cleaning and shopping? 

poppy123456

You're welcome. Based on what you've said there's no reason why you shouldn't receive all the money you're owed and receive the daily living amount going forward. Until it's resolved though, you will only receive the mobility payment.

clasship

Poppy, thank you, I'll work on this as soon as I return to the UK on 29th December. 

cristobal

@clasship @poppy123456 I think that I read somewhere that it depends on who's funding the accommodation i.e. whether you are paying or the council...

Annoyingly I can't find the article I read but I'll post a link if I come across it again...

clasship

I receive 100% housing benefit which pays directly the local council Tandridge District council. Whilst I don't know if this is the case for other in the same Sheltered Housing, the warden informs me others do receive Daily Living. From this info can I sleep more easily and expect I will receive the DL funds? 

poppy123456

I know you're worried but i have answered your question to the best of my ability based on what you've said. I'm not DWP and no one can tell you for certain that you will receive it and all you can do is contact them.

clasship

Poppy thank you. 

thespiceman

Hello @clasship   Pleased to meet you.

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

clasship

thespiceman, Thank you, I'll use these contacts. If I understand correctly this might come down to who pays my rent, I receive 100% housing benefit which pays my local council who are my landlords. It's been tough starting again from nothing and living back in the UK on ESA and housing benefit only to be kicked in the [email protected] DWP style. 

thespiceman

Hello @clasship   Please can I apologise first link typed it up wrong.

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