Do you think Raynaud's sufferers in t... - Scleroderma & Ray...
Do you think Raynaud's sufferers in the UK should receive the winter fuel allowance? Please leave comments too.
Please select one:
Shows how confused I've now become by the system because I thought we were. I know I used to get a heating allowance in the winter, not that that made any real difference. It's a disgrace we don't get the winter fuel allowance.
Absolutely. Putting an extra layer simply does not suffice over the last couple of years. Last night, I had a base layer, top, and feece on, electric blanket, and STILL needed the heating - I dread our bill, but its going to get colder yet. In addition, our heating systems will be under more pressure,so this would help towards regular servicing and inevitably increased repairs.
I find it strange, if you suffer industrial white finger you can get help from the system but hereditary sufferers get nothing no matter how bad it is.
Yes yes yes!! I physically cannot afford to put our heading on, for the past month I have been curled up on the sofa with microwave heat pads and a duvet- wish we could even afford for an hour in the evening just to take the chill out of the air!!
our 18month old son has raynauds and we def need it for him, even in bed with vest tights 2x socks pjs and gloves on he is still freezing in morning and regualry wakes in night cos hes cold. we cant afford to sleep with heating on for him, winter fuel allowance would massively help cos then we could have it on more x
I have just qualified! I don't receive any benefits and my husbands self employed, I told them I have a condition ( raynauds) and it is agrivated by cold temperatures, we will receive £135 sometime before the 31st march! Trouble Is I could have literally frozen to death by then, we are on a prepay meter that was here before we moved in, it's taking a lot to get them to remove it and we finally have our appointment for Monday,until then we are putting money we don't have ie rent money on our electric!
British gas amongst others should be ashamed!
Apply Apply Apply hassle them! It took me 3 hours of my time but if you don't they will not come and willingly hand it out! Apply! Especially if it is a child! Good luck.
Great u have got the allowance...who did u apply to???
Yeas definitely, I have secondary raynaurds and my gas bill is extortionate as I have to have my heating on 24/7 . We are not asking for much but just a little help with our fuel bills. As alot of our treatment has stopped due to funding.
Yes boss, I agree entirely. The problem is that we are battling against ignorance. People just don't understand,members of my own family don't understand. When you have the Prime Minister of this country saying,' If you are cold, put a jumper on!', we have an uphill struggle because frankly they don't care.
Of course, I will support this, it's just that I feel it's so wrong that people have to die before something is done.
I wonder if the Prime Minister knows that there is such a thing as Reynauds! Perhaps there should be a letter to the PM explaining how hurtful some of his comments are to Reynauds sufferers. It also is no good just keeping one room warm. Recently our bathroom heating needed attention and just getting up to go to the toilet in the night set off an attack of Reynauds every night. All though I was dressed for the Arctic it took hours to get my feet warm again and get back to sleep. It must be hard for people who are warm to understand how difficult it is to get cold so easily and how painful the condition is.
While not wishing to appear unchristian, if the Prime Minister woke up tomorrow with Reynauds maybe the goalposts might change.
Having said that, he has the health minister and other medical advisors to give him advice.
My primary concern is that a catastrophy will occur this winter due to ignorance on the part of the government. Last nights' news reported that last year 31,000 deaths occured in the winter.
I believe that we as a society need to petition the seriousness of this situation, in conjuction with our medical doctors/consultants because they certainly know how this condition affects our quality of life.
I am in favour of this poll and accompanied comments to be forwarded to the government as a first step to making them aware of our feelings and predicament.
Hi all im with british gas for gas and electric ,got discount for dual fuel .I get ESA as got several probs apart from Raynauds ..I had to send letter from consultant and proof i was in reciept of ESA .I qualified last year for £130 ,and this year £135 this year automatic ,they just said let us know if circumstances change .please keep trying .you will get it
It would be nice to get something off our fuel bill. Ihave Raynauds and Lupus and work part time. when i get home it takes a while for the house to warm up.
Definitely. Our heating is on constantly.
To be able to heat my part of the house in a comfortable fashion, triples the electric bill. We have no mains gas in our village and the oil heating does not extend to my living room or bedroom. With limited income any little would keep me warmer and greatly ease the pain.
I also have no gas. All electric. But storage heaters which are barely hot or warm shud I say come teatime. So that's when need the heat more than ever. Unless someone like the pm or queen actually gets raynauds to no just how it feels we have no hope of any support. It's awful
I also only have storage heaters as u said by teatime there barely even warm. When needed most. And to top it of only my living room one works none of others do. Sick of ringing landlady as get no where. My bedroom is damp and windows and sills r full of water in a morning which I don't av the energy to sort out or is it any good for my hands so wrong
The royal family or pms never seem to get cancer or any illness so I'd say they av cures but won't use them on us
I never even thought that raynauds sufferers could claim winter fuel allowance! Will definitely be looking into this with Npower.
I have to wear socks most of the year and wear fingerless gloves at work! People just don't understand the condition! They just think you're nesh! So frustrating.. I feel sorry for everyone with raynauds and appreciate that there's a lot of people a lot worse than me x
Raynaud's and Scleroderma sufferers should be recognised as a vulnerable group and be eligible for the cold weather payment. I do know that if you are registered disabled and on certain benefits (now called ESA) you will qualify and all the energy suppliers will give a discount and they do ask what benefits you are receiving. It is worth asking, you never know until you do.
Only Raynaud's sufferers know what it's like to be constantly cold even in the middle of winter. All the best. keep us posted.
Graygirl1
Long before I knew how ill I am I had to have the heating on full all winter. Everyone who came to my house said it felt tropical and were sweating, it made me feel embarrassed and I couldn't understand why I had to have such a hot home. I tried to save money one year by turning the heating off and got pneumonia and nearly died. I have never understood how the government could not acknowledge such a serious need. I have seen people in hospital who have lost fingers and toes from Raynauds. Shall we start a campaign on the government website?
poppy57
Hi
Yes do ensure you apply for the supplier's winter fuel discount. If you receive a qualifying benefit it may still not be an automatic right and you may have to apply for it with most suppliers.
I have just begun a petition for the pensioner winter fuel allowance to be extended to vunerable people affected by the cold. There is little hope of this happening before the next general election sadly. Will post link to Petition on 38 degrees website as soon as.
I, myself, have this. However, have been told that because I get a very small private pension, I am not entitled. I need my heating ON
I have just been told about eons warmer home £135 payment for the vulnerable & without being rude to me he felt I should apply - he even RANG them from his phone. They turned me down! He gave me several numbers & said keep on at them because he was determined to get me some help. Ive now been told I qualify & applied online, I shall keep my fingers crossed. Thats without taking raynauds into account but when you do... I need gloves & cosy socks in SUMMER too!
Our heating bills are huge we pay over £1300 for heating oil plus coal and logs for open fire and log burner plus electric bill for extra heating in cold bathroom. Our house isn't huge just three bedrooms, not sure where government gets its average fuel bill from we exceed that just on oil. And I still turn blue!!!
Because my hubby works we do not qualify for any of the help schemes.
Dear Friends,
I just created the petition "Pay the winter fuel allowance to people with weather-aggravated health problems" and wanted to ask if you could add your name too.
This campaign means a lot to me and the more support we can get behind it, the better chance we have of succeeding. You can read more and sign the petition here:
Signed
I do agree with a fuel allowance for those that need it. There are many who take allowances such as winter fuel allowances and child benefit who are wealthy enough to do without and if they did so then there would be more in the pot for those who do need it.
I'm not one of the wealthy ones far from. But to be fare shouldn't matter if ur wealthy or not if u need extra heating because u suffer a illness then every one shud be entitled to it. Not just us needy
Yes, I think they should definately receive the heating allowance. My energy provider has helped me pay my heating bills before because I have 3 chronic illnesses. They have an energy Trust fund, so I think all energy suppliers should follow suite.
I have spent the bulk of the last 3 winters in bed when I am at home - Iv got an electric blanket and it is the only way I can get heat into my feet and hands at home even when I wear thermal gloves and 2 pair socks. I also don't cook very much during winter because my kitchen is so cold my fingers freeze if I spend any time in it. I simply cannot afford to heat the house for more than 2 hours in the day.
Definitely help with fuel costs would make an enormous difference to my life in the winter. Even though I wear so many layers including 2 pair socks and thermal gloves when I am at home I still have to keep going back to bed to get feeling into my fingers and toes; all because I cannot afford to heat the house properly
I suffer from raynauds and my heating is a lot all year around not just winter cause I sit by the fire in the summer time and winter time it's on all the time and the heating to the whole house is on so I don't have an attack
I went to a pip consultation last week. She was horrible. Tried telling me iv not ad an attack for a long time so why I can't do much. How wud she no if I have ad an attack. But I agreed with her yes I haven't that's because I keep myself from being cold by staying indoors and usually in bed with my electric blanket on constantly. Fingers crossed I am accepted coz the way she was I don't think I will be. Not only put in for it for that I suffer from congestive heart failure to which causes bad tiredness and circulation problems as well.
Yes its the only way to help with heating costs. I already get it as I, m old !! I need heating up to 22c all the time.
I am 61 and have had to fight every winter for the past 40 years with my husband because of the price of home heating. My husband now receives his winter fuel allowance but I do not and I do not think that I am eligible until I am 63, when I receive my state pension.
I'm going to put the cat among the pigeons here and say that it shouldn't be automatically given to Raynaud's sufferers, but should be based on income.
Shudnt be based on income that's wrong. People who earn good money still shud be entitled to it. It's not a chosen illness it's one we get and everyone shud be treated fairly by getting this fuel payment and no I don't work so I'm not saying it because I'm wealthy I think it's only fair everyone gets it
Most definitely yes! It's a condition where we cannot control and we desperately need it, its a type of 'medication' for us
We are required to spend additional on our heating to ensure that out homes are warmer, just to keep at a 'normal' and this is a disability, so we should be treated as such. Why are we discriminated against just because our disability is a hidden one?
Well said
Would probably save the NHS/government a lot of money in the long run as we would need less treatment for digital ulcers and other ascoiated problems. Many of us have other Scleroderma and other health problems that make it very difficult for us to work so are on very limited incomes
the cost incurred by having a steady temperature even during cold times is way offset by the savings made in healthcare. chillblains, pain, blood pressure changes... i end up in hospital some winters, from lack of heating alone.
Yes I do think we should get winter fuel payments
Heres one for all you Raynaud's suffers like me. Look up Peacock handwarmers there are a few other makes but the peacock is about the best made in Japan not china to.
It runs on petrol(lighter fuel)no vapours/smell as that's what it uses to make the heat and no flames either.
Very simple to use looks like a ladies hip flask.
Take out of fabric pouch remove lid and catalyst place measure over fill port fill to level you require turn so valve opens can fill measure a few times say if you want it to run all day/night then replace catalyst place a flame lighter/match etc to side of it not across top of catalyst as platinum wool you don't want to burn that or it won't last long! once warming or see a glow replace lid and pouch (must place in pouch) it gets "hot"
60/70.c's i have a pair run one in each pocket but if you get normal or large size(theres 3 sizes) you can place it round small of your back maybe fashion a belt/holder etc? to keep it there(job for someone) that will warm all of you all over.
It's a fantastic device and very safe
When your on your own with one wage coming in so I have to be careful how much money I spend on my heating. Many a time I've gone to bed with my coat, hat and gloves on. I think half the problem is the lack of understanding about Raynaud's, I've just started a new job and most of my colleagues think I'm causing a fuss about my Raynaud's, that is until they see me having an attack! I think we should get extra help, as in a way it is a kind of disability as using your fingers at times is impossible, but I won't hold my breath as I can't get help foe being deaf, as they don't class it as a disability, so why would they do the same for a Raynaud sufferer.
I I they shud show adverts about it to let people no and understand about it
Yes they should !!!!!!!
I have got raynaud's and I live in the countryside with no heating and cold water and every day I have to wash in cold water and suffer badly with pain. please anyone could help me to get some funding please because i'm not sure what you have to do.
Yes. Putting extra layers on helps but the government should be helping people who don't ask for this illness, and with gas prices soaring its limiting the time you can afford to put the heating on.
and DLA! some days I cant get to the shops and when I do I cant use my fingers properly, feels like it takes an age to pay at till rrrr
It costs me an absolute fortune to stay warm in my home during the colder months, which in our climate can sometimes be 12 months of the year.
I have Raynauds a long with Scleraderma . We with Raynauds need to keep our house warmer in the colder weather . Our fingers ,hands , feet ,toes and even our entire bodies sometimes are involved . To keep our homes warmer , we therefore have to increase the temperature of the house . Some of us even have to use a heating blanket also .
if we are to get the cold winter they are predicting then I shall find it very hard to keep my home warm I certainly can not afford to keep heating on all the time.
Yes I do as we suffer dreadfully I do not go out in the winter and i am always wrapped up in the house brrr its always cold. I find that when I get cold I have to go to bed and fall a sleep when I do this. My daughter does the same.
I didn't even know this was a thing, my parents heating bills are crazy thanks to me, I live my winter months smothered in multiple blankets!
you can get £140 off your gas bill but you have to have below a combined income of £16,000 if you live with someone. So...if your combined income is £15,999 you'd get it...wow. If it's £16,000.01p you won't! Not fair is it?
