We'd like to hear from you

Carol_Scope

We're trying to understand how disabled people are feeling about the extra costs of winter and Christmas. We'd love to hear from members of the community about their thoughts on the following three questions:

1. Are you worrying all of the extra costs this winter and what it means for your Christmas?
2. Are there any difficult choices or sacrifices you think you might have to make? What might they be?
3. Comparing this Christmas to last Christmas, how might things be different?

woodbine

When you say "we're trying" who exactly is the we?

Adrian_Scope

Hi @woodbine, thank you for the query. 

Carol is asking on behalf of Scope.  

Jimm_Scope

Let's get the ball rolling eh?

1. We are concerned about energy costs. The past year was quite difficult regarding our energy company. Felt like a fight to not have our direct debit go up massively. While I've read news articles suggesting the cap will go down, not up, it's still a concern. Anything we have to put aside for energy bills of course takes away from spending with family or on ourselves.
   
   
2. I will say that me and my partner, with our incomes put together, have the privilege of being quite comfortable. Certainly hasn't always been this way, but this year will certainly be more comfortable than last year. I should be able to get presents for my family and partner, but I may have to cut back on something for myself. Certainly the easiest christmas decision I've had to make. Some years I had to decide between expected presents, food and rent.
   
   
3. As I've mentioned in the previous answer it will actually be easier for me and my partner. We've been lucky this year and our joint income has actually gone up from last year. I know few can say the same.
   

It's not an easy thing to talk about, or think about, especially if you're doing worse off.

RainbowFluff

I actually find these questions quite insensitive because people will either be in the "I'm okay but might need to cut back a little" side, or the "how in the world am I going to survive and not end up on the streets" side of the fence like me. We can't afford to think about Christmas or even acknowledge it this year. I suppose I'm fortunate that I don't have children and me and my husband are in it together so know how things need to be. But I've tried to answer the questions anyway.

Carol_Scope said:

1. Are you worrying all of the extra costs this winter and what it means for your Christmas?

Last year we couldn't afford our energy bills and our debt is now so high we've had to agree to a pay as you go meter. Christmas won't be about celebration, it'll be staying warm, staying together and having anything to eat. I'm worrying I'll end up in hospital again and worrying how to keep a roof over our head. Christmas just isn't a thing for us this year.

Carol_Scope said:
2. Are there any difficult choices or sacrifices you think you might have to make? What might they be?

Whether we pay our rent or pay for some heating. Whether we "treat" ourselves to food or an extra blanket. 

Carol_Scope said:
3. Comparing this Christmas to last Christmas, how might things be different?

Last year's Christmas was already different to our normal because we just couldn't afford it. We made an effort to put up our decorations still and had more of a typical Sunday lunch rather than our normal Christmas spread. We didn't do gifts and told ourselves that we'd make up for it this year and put aside throughout the year in preparation. Sadly in January I lost my PIP making our situation even worse than 
last year and meaning every week is a struggle. The past few months we have relied on food banks and I can't see how our situation will change by Christmas. 

66Mustang

Didn't want to answer as like @Jimm_Scope we are not too bad, but as they answered along the same lines I will too. I suppose you do need balanced experiences from both sides, not just people saying they are struggling.

1. We are fortunate as we have no young children in the family so everyone understands, if we have a leaner Christmas, why it is happening. We are not worrying about energy as we did the sensible thing and overpaid on our fuel account over summer. We usually underpay a little bit over winter so the credit built up over summer gets used as a buffer.

2. We don't need to make any drastic cutbacks this year like not heating but we will be cutting back on some of the excess.

3. We will be trying to cut down on presents this year. Also we always buy enough food to last until February so may be trying to just buy enough for the festive period. We will be cutting down on the alcohol this year. Last year we more or less had a full stocked bar in the dining room which is just silly as half of them don't get used so we will just be buying bottles that are specifically requested. 

In summary we will be cutting down a bit yes but only on the unnecessary excess. We will still be able to have a nice time. No choosing between buying presents and having the heating on.

I think a major thing is having young kids you don't want to disappoint, in our family everyone understands that times are tough so no one will be surprised if they don't get a massive present or something.

Adeline

I'm worried about affording uniform for my children so Christmas isn't a priority or something I have the brain space to think much about. 
Explaining to my extended family is embarrasing but they'll understand. Explaining to my teens is heartbreaking and sad. Explaining to my youngest and disuading them from their belief in Father Christmas and Christmas magic is already keeping me up at night. 

IAmNotANumber

Yesterday, I told my family I can't afford to buy Christmas presents.  I'm hoping I can spend £5 each on them. 

Nannalew

Don't do Christmas it's just another day. No family so no point. I think people put to much pressure on themselves for 1 day. People should be grateful and just injoy the day.

Nannalew

Adenine, have you asked your local council about the free school vouchers??? You maybe able to get some help. Good luck. I hope it helps.

Nannalew

Xmas is really about being with family and giving gifts that they need and NOT what they won't, 

Shellyjay

Things are so hard at the moment cost of living is hitting everyone hard. Yes you may think the rich are not finding it hard bit they are just like the rest of us. And as for Christmas can't be as bad as last year for my family but I will be watching the pennies. And i always say their is always someone worse off than me .

Surrey60

Carol_Scope said:

We're trying to understand how disabled people are feeling about the extra costs of winter and Christmas. We'd love to hear from members of the community about their thoughts on the following three questions:

1. Are you worrying all of the extra costs this winter and what it means for your Christmas?
2. Are there any difficult choices or sacrifices you think you might have to make? What might they be?
3. Comparing this Christmas to last Christmas, how might things be different?

I am so concerned about Christmas this year, after my partner left me for a new woman, he left me in a position where I had to use my first foodbank age 63. My 11 grandkids, 1 great grandson and 2 daughters, for the 1st time will not have anything from me. Last Christmas was totally different and its so hard

gvf23

Much worse off. Today I've had to beg for another Food Bank voucher. I'm UC LCWRA and standard daily PIP. So far I've managed to juggle. But now I'm going to start to fall behind with bills and I'm constantly in crisis. I'm single and scared of being homeless. No one should have to live this way. I don't want luxury. Just being able to afford bills and have some dignity. Trying to survive on benefits is making my already fragile mental health worse and less able to work. 

joelincs

I’m only  more worried about keeping warm, presents are always difficult .
 

mills470

Carol_Scope said:

We're trying to understand how disabled people are feeling about the extra costs of winter and Christmas. We'd love to hear from members of the community about their thoughts on the following three questions:

1. Are you worrying all of the extra costs this winter and what it means for your Christmas?
2. Are there any difficult choices or sacrifices you think you might have to make? What might they be?
3. Comparing this Christmas to last Christmas, how might things be different?

gvf23

RainbowFluff said:

I actually find these questions quite insensitive because people will either be in the "I'm okay but might need to cut back a little" side, or the "how in the world am I going to survive and not end up on the streets" side of the fence like me. We can't afford to think about Christmas or even acknowledge it this year. I suppose I'm fortunate that I don't have children and me and my husband are in it together so know how things need to be. But I've tried to answer the questions anyway.

Carol_Scope said:

1. Are you worrying all of the extra costs this winter and what it means for your Christmas?

Last year we couldn't afford our energy bills and our debt is now so high we've had to agree to a pay as you go meter. Christmas won't be about celebration, it'll be staying warm, staying together and having anything to eat. I'm worrying I'll end up in hospital again and worrying how to keep a roof over our head. Christmas just isn't a thing for us this year.

Carol_Scope said:
2. Are there any difficult choices or sacrifices you think you might have to make? What might they be?

Whether we pay our rent or pay for some heating. Whether we "treat" ourselves to food or an extra blanket. 

Carol_Scope said:
3. Comparing this Christmas to last Christmas, how might things be different?

Last year's Christmas was already different to our normal because we just couldn't afford it. We made an effort to put up our decorations still and had more of a typical Sunday lunch rather than our normal Christmas spread. We didn't do gifts and told ourselves that we'd make up for it this year and put aside throughout the year in preparation. Sadly in January I lost my PIP making our situation even worse than 
last year and meaning every week is a struggle. The past few months we have relied on food banks and I can't see how our situation will change by Christmas. 

Sorry you lost your PIP. I've just managed to get it for the first time on 3rd separate attempt with help of CAB. But I'm aware it isn't permanent. My ADHD won't go away. I'm on my own and trying to live on just UC LCWRA and PIP is making my health worse. I hate Xmas anyway as I'm long term single and I've spent the last two on my own very depressed. 

mich22

1. Are you worrying all of the extra costs this winter and what it means for your Christmas?
2. Are there any difficult choices or sacrifices you think you might have to make? What might they be?
3. Comparing this Christmas to last Christmas, how might things be different?Are you worrying all of the extra costs this winter and what it means for your Christmas?                             I haven't even thought of Christmas. I'm hoping I'll still have my home by then. Last year I struggled with energy costs from £280 it has gone up to £400 a month. I used credit card to pay some of the months.                   Now it's my mortgage payment gone from £458 to £1160 month as I'm stuck as a mortgage prisoner. Every single £1 is carefully used. I'm in process of do I sacrifice the mortgage (already sacrificed the energy bill) to pay to get paint etc to spruce house up to sell it or continue to struggle until I can't. I've got my son 28 and daughter 12both with disabilities and my mum who's very poorly living with me. It's a nightmare and the thought of Christmas is just too much to think about! Last Christmas I was frugal and only bought my kids presents. This year I've had to have conversations with my 12 yr old about cost of living etc so she hopefully understands why it no to everything. Having said that as long as we're all together we'll make it special as losing my dad last year unexpectedly makes you appreciate the here and now, money or no money! 

richump

We're trying to understand how disabled people are feeling about the extra costs of winter and Christmas. We'd love to hear from members of the community about their thoughts on the following three questions:

1. Are you worrying all of the extra costs this winter and what it means for your Christmas?

I don’t buy Christmas Presents according to my beliefs but my wife does and buying things for others make her so happy. In the last year she has had open heart surgery and at least 4 strokes and she has just been told there are major issues with the heart surgery and is likely to need it doing again in the next month. I feel due to this she needs and deserves some joy so I will not be paying bills at Christmas.

1. Are there any difficult choices or sacrifices you think you might have to make? What might they be?

Not paying bills at Christmas so my wife can have a small measure of joy.

1. Comparing this Christmas to last Christmas, how might things be different?

No heating, no food and no visiting families.

caz7

Last year I struggled to find work due to a mental health condition and anaphylaxis issues which employers were reluctant to employ me.  I had to cut back dramatically. I was in credit for my energy bills but the winter bills were extremely high. I also had the cost of logs which was £250 in August and £250 in January which I couldn't afford and had to lend money from my ex husband. I cut back on food and eating out, only going out on an evening once a month, I didn't have a hair cut or colour costing £120 for a colour and £33 for a cut for over 6 months. I stopped waxing my bikini line which was £32 every 6 weeks, I stopped having acrylic nails £40 every 3 weeks, and tried to make more economic meals such as spaghetti bolognaise, curries and soups. I had a limit on Christmas presents for myself and my daughter to £100 for each of us. I had to break through my savings for a rainy day and pension because I couldn't afford to live on universal credit without the disability allowance component and after doing a personal budget on a spreadsheet, my survival budget was £850 per month and was only receiving £660 in universal credit. The actual amount was £950 per month so I had to decide not to go out at all and spend no money on food and entertainment. I had a buffer of £5600 savings which has mostly all been used up over the last 2 years. I am unsure how I will get through the winter months this year, financially.  

PollyPick

Last weekend I wrote to our 'newly elected MP' about the Carers Allowance - why do we get this taken away when we become 'Pension age'? - I explained once again that being a carer does not end it just get harder the older we get and that extra few pathetic pennies would make a very big difference in our lives without having our Pension or Pension Credit or other Benefits being affected with 'deductions' due to the extra being paid that we are entitled to.
I lost this Allowance many years ago and the struggle to maintain a decent life for my son and I have been to say the least frightening at times; as many of our members would no doubt agree; and in this time of high costs it's time the Government thought of us and not migrants or other countries' needs - this is not being selfish it is time we were given some thought because it's the money we have had taken from us that should be paid out to us - AM I THE ONLY ONE THAT THINKS THIS without having some kind of backlash?