Winter Fuel Payments for people with Raynaud's

swecri

I am a 21 year old sufferer of Raynaud's, Lupus SLE and another related connective tissue called Scleroderma. These conditions are complex and often difficult to understand and manage, however my main symptoms are triggered from being in environments with temperature below 22 degrees.
When I am exposed to the cold, I develop ulcers on my hands, ears and elbows which are excruciating. I always need horrible medical treatment as an in-patient in hospital and this has a difficult effect on my life particularly during the winter.
My partner and are fortunate enough to own our own house, however the winter heating bills really are extortionate often leading us to the choice of debt, or not having the heating on at all. I need the heating on all year round particularly the winter.
I am trying to establish whether there is any way that Winter Fuel Payments can be considered under the circumstances, or if anyone has had success in claiming Winter Fuel Payments which are usually only available to the over 60's?
My condition is chronic and progressive, and another thing I need to consider is I am also five months through a very difficult and risky pregnancy and I am keen to continue to do everything I can to prevent further complications to my own body and to the baby. I also want to try and do everything I can to slow the progression of the diseases and I know help financially would help me to achieve this.

[Deleted User]

swecri wrote: »

I am a 21 year old sufferer of Raynaud's, Lupus SLE and another related connective tissue called Scleroderma. These conditions are complex and often difficult to understand and manage, however my main symptoms are triggered from being in environments with temperature below 22 degrees.
When I am exposed to the cold, I develop ulcers on my hands, ears and elbows which are excruciating. I always need horrible medical treatment as an in-patient in hospital and this has a difficult effect on my life particularly during the winter.
My partner and are fortunate enough to own our own house, however the winter heating bills really are extortionate often leading us to the choice of debt, or not having the heating on at all. I need the heating on all year round particularly the winter.
I am trying to establish whether there is any way that Winter Fuel Payments can be considered under the circumstances, or if anyone has had success in claiming Winter Fuel Payments which are usually only available to the over 60's?
My condition is chronic and progressive, and another thing I need to consider is I am also five months through a very difficult and risky pregnancy and I am keen to continue to do everything I can to prevent further complications to my own body and to the baby. I also want to try and do everything I can to slow the progression of the diseases and I know help financially would help me to achieve this.

There are NO circumstances where WFA is payable to a household that doesnt have at least one resident under 60 years old.
Does your condition give rise to care and or mobility needs?If so have you applied for DLA?

Oldernotwiser

Are you claing IB or DLA? Surely these benefits are intended to cover extra expenses like these, associated with illness and disability? There's lots of advice on here about claiming if you need it.

Errata

Are you on a Social Tarriff ?

shelley_uk

My partner and are fortunate enough to own our own house, however the winter heating bills really are extortionate often leading us to the choice of debt, or not having the heating on at all.

If you are already in arrears with any of your fuel debts you may be eligible for a payment from a trust fund such as Anglian Water Trust Fund or British Gas Trust fund....it will depend on who is your supplier but its worth looking into because the grant provider for each of these ( 'Charis Grants' ) maybe able to find you financial help from another resource. Apart from these grants there are other charitible organisations available all over the UK who may be able to help. Are there any groups/charities that have been set up to help sufferers from Raynaud's, Lupus SLE ? There is also the Salvation Army who will consider helping anyone who has a need

swecri

Oldernotwiser wrote: »

Are you claing IB or DLA? Surely these benefits are intended to cover extra expenses like these, associated with illness and disability? There's lots of advice on here about claiming if you need it.

I am in recepit of DLA, which pays for my car, and also covers the cost of some of my drugs and also the heat pads I have to use. I also use it to pay for the equiptment I have to buy to be able to dress myself, wash, cook, clean ect. And my car fuel bills are higher than normal too because I just cant walk anywhere. I find the DLA payments don't cover the costs of my expenses already let alone adding my winter fuel bills too. On top of that, every winter my Rheumatologist and I have agreed it is always wise for me to go abroad somewhere hot as the alternative always results in me ending in hospital as an in patient for at least a month, and hot holidays during our winter times are not usually cheap! I have tried to make a habit of saving all year for this, but this year we have mounted debt for this holiday, and I cant face the heating bills too!

I don't claim IB or any other benefits, because I work for the Police force, and they are very supportive. But on my days off I literally have to 'hibernate' even during the summer, to keep myself warm and as well as I can.

swecri

I don't know if anyone else suffers from Raynaud's but it can be an unforgiving disease, and very often makes me really split financially. I get a little upset when I have the heating bills come through, because it is hard enough paying for a mortgage without the additional high heating bills. It just doesn't seem fair, or consistant. The government won't help pay for my heating, yet this often causes the NHS to have to pick up an even bigger bill when I'm admited into hospital for weeks and weeks. It's not fun either!! My Grandparents are luckey enough to live in a well insulated 1st floor flat and they have a !!!!!! payment of £200 every year. Yet

swecri

I don't know if anyone else suffers from Raynaud's but it can be an unforgiving disease, and very often makes me really split financially. I get a little upset when I have the heating bills come through, because it is hard enough paying for a mortgage without the additional high heating bills. It just doesn't seem fair, or consistant. The government won't help pay for my heating, yet this often causes the NHS to have to pick up an even bigger bill when I'm admited into hospital for weeks and weeks. It's not fun either!! My Grandparents are luckey enough to live in a well insulated 1st floor flat and they have a !!!!!! payment of £200 every year. Yet they never use their heating for more than a hour a day. Yet mine is on as much as I can afford, because I am poorly otherwise!!! My Grandparents are luckey I know, but their heating bill doesn't even come to £200 over the entire winter!!! It's so frustrating!!

Rikki

My sister and I both had/have raynauds. My sister is no longer with us unfortunately but I still suffer.

I understand about needing to keep warm but its not the governments responsibility to contribute towards your heating bills or mine.

Gemmzie

Is your house well insulated? Do you have a modern boilers?

There's grants you can get to cover these things which should help.

Oldernotwiser

swecri wrote: »

On top of that, every winter my Rheumatologist and I have agreed it is always wise for me to go abroad somewhere hot as the alternative always results in me ending in hospital as an in patient for at least a month, and hot holidays during our winter times are not usually cheap! I have tried to make a habit of saving all year for this, but this year we have mounted debt for this holiday, and I cant face the heating bills too!
can.

For the last few years we've been spending a good part of the winter in a warmer climate, because of my husband's medical condition. We find it cheaper than staying in the UK. The knack is to not think of it as a "holiday" but as living in a warmer place for a while. We usually pay about £75 per week as rent, which, given lower living expenses abroad and fuel charges, compares very favourably with costs in the UK.