Scleroderma & Raynaud's UK (SRUK)
6,885 members3,253 posts

Living without heating...heh

Challenge Accepted.

To be perfectly honest I had no real choice in the matter. I was diagnosed with Raynaud's last year...or was it the year before, I don't remember really. What I do know is that over the last year my Raynaud's has progressively gotten worse and worse. When my doctor said, "It's terminal" I didn't think he meant it would get worse and worse, say like cancer. In fact I'm pretty sure he was referring to the fact that the phenomenon doesn't usually go away, once you have it, that's it. Yet, here I am, effectively house bound because I don't or can't make many arrangements otherwise. I can't really walk more than 150 yards (especially with the current weather) without my toes and feet going numb, my hands seizing up and people staring at my blue nose. The buses only come when they want to and I have no personal transport. So, stuck in these South Wales valleys that I'm not actually from -_-; . Still, I manage I make adjustments at home, I plan my outdoor excursions meticulously. Making sure I have enough warmth to get too and from my destination, ensuring that I'll be able to stay at my destination for some time, often declining to go places if their temperature isn't high enough. It's a damn nuisance and presents its own challenges from day to day.

Then I check my gas certificates, I live in rental accommodation. The last certificate had been done in 2011, eagles might spot that they have to be done every year that you're in the property. This was early 2013 that I noticed. So the gas engineer came out, poked around a bit and then capped it from the meter. My face dropped as he slapped one of those triangular stickers all over it. Apparently I had a bit of a leak somewhere. Now. Gas is effectively the only real source of heat in my property, even the sunlight doesn't get to it much (and we're still in winter as I type). I phoned the landlord. It took my landlord two weeks to get the money together to pay the gas man to repair the system. During those two weeks I had no hot water, no gas central heating, no gas fire. Middle of winter. We had snow!

Ah really fun. Now, washing my hands was a bit more of a chore than it used to be. In fact my primary method to relieve pain in my hands and feet was to bathe them in warm water for a short time. Of which was doing more or less hourly. You call that OCD, I call it coaxing blood into my fingers. Now some of you might say, "Aren't you on Nifedipene?" Well, that's true, I was. Coming into last winter, a doctor put me on the medication for a month. Two weeks into the medication I will happily report that my fingers stopped changing colour, they don't even change colour that much even now. They somewhat stopped going numb as well. However therein lies the problem. Nifedipene is not a cure for Raynaud's, it's not even a treatment, it's a way to prevent damage that an attack can cause. The pain for me, didn't stop. Same causes, same problems. I have photo's of my hands completely white from before (which is why I went on the nifedipene in the first place) but I wasn't getting the relief or the numbness, it was just full blow pain. I stopped taking it pretty sharpish but there was some damage that was already done. Now the colour change doesn't happen so much but the numbness is back (sometimes), which I'm grateful for (sometimes). So now, I get pain a little more frequently than I used to and why handwashing times went upwards.

So no hot water, no bathing (at least not in ice cold water), I was having strip washes with an electric halogen heater in the bathroom. (Still am). I boil the kettle to wash my hands but sometimes I just skip the wash altogether and just sit in front of the electric halogen heater. It's no substitute for the heat that a gas fire kicks out and even on full blast, I can't get the room temperature above 12C. So my gloves (two pairs) have been getting an awful lot of use. Indoors. I wear two t-shirts a jumper and a fleece, two pairs of trousers and three pairs of socks. I've ran out of Little Hotties and can't afford any more for a while, my microphone and dictation software is getting a whole new lease of life as the primary way to communicate with my 'linux' computer. (Hehehe....voice recognition fails). Tea making is up by at least 75% mostly just to keep my feet moving, but it helps to boil a kettle for two things rather than just one, hand washing, hot waterbottles and tea in one go!

I also don't need to put the milk back in the fridge so often, which means no needing the tea-towel to get the milk so often. Cooking is a chore anyway because I mostly have frozen foods. (I know, I'm just asking for trouble). What I tend to do is make up meals in advance so that I can just put them in the oven or microwave straight away. It 'can' make life much easier. That said, takeaways make things even more easier because I can microwave any left over pizza the next morning.

I can no longer warm all the rooms up at once or keep a constant minimum temperature throughout my home, but hey I'm on prepayment anyway and apart from a £25 cold weather payment I'm effectively scuppered to put more than £10 a week on the gas anyway. But hey, my gas fire and central heating twice a day were pretty good. I didn't mention that my thermostat for my central heating has never worked. Heh.

You might probably be wondering what my Landlord was doing all this time. Well, hunting high and low for the best possible deal of course, what else would they be doing, while I'm putting on more and more layers, warming up two to three hot water bottles to even remain sitting at my computer. (I use a hot water bottle as a wrist guard, one on my lap and one as a foot rest). If I didn't have the electric halogen heater and three pairs of gloves, this would never have been compiled but it goes to show, that it 'is' possible to live without heating for two weeks with Raynaud's.

But enough of the different things I've been doing and my penchant for complaining about the difficulties, more about the present day and the return of the Gas Man on day 14. Yes he came, he started the job and then got to the fire. Now, a gas check is pretty simple thing, a gas safety cert doesn't mean that you have to go into the internals of the fire, you're pretty much after the scent of gas and making sure it isn't clogged. Well. It wasn't clogged. The leak had been fixed...well, I say fixed, there was a new pipe installed instead. To install the new pipe fully however, he needed to get into the fire, which turned out to be over 25 years of age and apparently without a single day of service throughout its life. Within moments of my hopes and dreams of that night having a gas fire, instead I now sit looking at the fire with the new triangular sticker on it. Condemned to oblivion. Unfortunately, this innocent looking gas fire was also my back boiler so no hot water either.

This means my next challenge is to see how many days I can continue this well, I call it torture. Up here in the South Wales Valleys, with temperatures expected to drop a little further. I guess sitting here in a sleeping bag waiting for summer is probably not the most sensible thing I could be doing but hey what's life without a few challenges?

I'll probably update on any new techniques I come across to stay warm. Adding more layers is a given, but typing through mittens is an art form!

Now that I've written this I'm not so damn down on my situation either, which was really starting to annoy me. I wonder if “Self-Hate” can be a good source of energy...

---Edit Update----

Well... my Electric just went o.O My week has probably turned into one of my more 'unlucky' weeks going. Glad I have emergency ^_^

Good luck to all other Raynaud's sufferers out there! =D

30 Replies

That is some story!!

May I suggest you add to you list some exercises? Can you swing your arms round. this "helps to get your blood moving to your fingers"?

Even if walking is difficult, can you flex your feet? Try not to sit still all the time.

I am not a medic and have very mild Raynauds, but these ideas have helped me a lot.


Yeah, turned into a three page essay before I started, I was on the verge of a minor break down having been informed that I'd have no heating for the foreseeable future, but then I wrote that piece and felt much better. :)

I try most things when I'm able, frequent hand massaging, though admittedly the swinging the arms around I am reluctant to do (I do actually do it, just not often). I find bringing my hands in and wiggling my raised elbows in circles has a similar effect.

I can't always flex my feet though, walking is tricky because my feet are generally the first things to go numb. However, combined with a hot water bottle I have been able to do more of your suggestion in the vain attempt of staving off another attack. You're right, I shouldn't sit all the time, but *insert rage* the house is cold! Ah I really need some uggs... but never mind.

I take my dog for a walk when the weather mellows out a lot, but often this involves using his pulling instinct to keep me stable and going in one direction (as my feet often go numb). Still he needs to be walked, I need the exercise so... I wonder, would getting up and making cups of tea count as exercise?


Oh bless you, that is terrible. I know I woould feel rage, desperation, loss of hope - well every negative emotion really all at once! I wish I had any helpful tips but all I can do is send you lots of warming thoughts and hope your dog is nice and cuddly and can help keep you warm. Is there a Citizens Advice place near you that could help you get your landlord to speed things up a bit? It is his fault for not keeping up his legal obligations to have gas appliances serviced every year after all and it seems unfair you should suffer. If he at least lent you some more electric heaters and paid to keep them going for you it would help a bit.


Thanks that's more than enough already ^_^; I'm actually quite an optimistic person, just a momentary lapse. The Citizens Advice passed me onto Shelter and Shelter said, "Oh...actually we can't do anything...". Probably less help that my landlord has no money and has been selling other properties off already. *not looking forward to the eviction notice*. I have a shorthold assured tenancy -_-; .


Goodness Ravenshade, I didn't think your situation could get any worse - but it has! All I can do is visualise you in a nice new warm home which is perfect for you and your dog x


Brings to mind a certain Pokemon episode Team Rocket clip actually about visualising yourself in a warm place to keep out the cold. *showing my age right there*. I think I'll try it myself!

Still, it could be much much much worse *stares at the condemned gas fire*, I might not have survived a gas explosion....

Remember folks, always get your gas checked once a year!


Ravenshade, I don't know how you're keeping going !!! I really don't know how I'd cope without the heating and warm water (like you, I use it to help ease the Raynauds attacks)

I was going to suggest getting a electric throw to wrap around yourself whilst you wait for the gas to be fixed, but that seems it's a little too late for that !!

Keep that optimisim of yours on the boil, and I hope that things will sort themselves out very soon. Lil Dee xx


Yeah, I heard the beeping. I think gas is about half the price of electric in terms of how well it keeps me warm. I'm going to have to find one way or another around this.

I guess most of it, is down to no choice and just being resourceful with what I have. Mostly because I'm not a very limited budget. I used to have a budget of only £57 a week to live on, let alone how much I could dedicate to my heating. Maybe that was a contributing factor in how my Raynaud's deteriorated. =/ But thanks!


Do you have electricity now?


Does Battery power count?


Hi Ravenshade. What a delema? Your landlord sounds completely heartless and whoever he/she is, should be ashamed. If I were in your situation I would give them no peace. I would call on every agency going, starting with your local council. The council has the power to make your landlord "fix up". Call the council's customer service asap, tell them why you are calling and of your medical problems. Ask to be put through to the right department that governs how landlords make their property safe for tenants. If the landlord uses a letting agent call them also. They should make sure the landlord provides you with safe and good working heating system and other facilities.( All appliances provides by the landlord should be in good working order and safe).

You could also call the Vulnerable Adult Services at your local council. You may be able to self-refer to the occupational therapy department. They have all sorts of information and help to hand and will be happy to talk with you. Speak to your doctor and ask to be referred to social services in your area if you are not able to self-refer, sounds as if you need some more help with your day to day living. If all else fails use the rent to fix the heating and write to the landlord saying why you have done so. If there is any intimidation from he/she call the cops.

Have you any family or friends you can call on for a little help? I wish I was nearby your home. I am a fellow sufferer but lucky to have a warm home. I can't afford the bills but I am not going to be switching my heating down or off anytime soon. I'll worry about the bills later!

If you are registered disabled there lots of charities out there but you have to search to find them, but just call social services and they will point you in the right direction and also offer you help. Let them know you are desperate, don't feel bad about asking for help and please try not to get too down-hearted. Things Will get better. Sometimes you have to ask or make a nuisense of yourself to get the help you are Entitled to. If you are registered disabled ask the council about help with transport to get about. In London we have Dial-a-Ride and others but I don't know your area or your other circumstances which may make you eligible for such services. My motto is "Ask". The answer can only be "yes" or "no".

If you are not registered disabled I would urge you to apply for Disability Living Allowance (DLA).

Keep us informed of your progress. I'll be thinking of you. Best wishes.



Hehehe. Heartless? Hmm, more like extremely cash strapped nevertheless I am one of those unfortunate people who live in a Shorthold assured tenancy. Well that assured period has long since finished. In which case should I pressure the Landlord further I'll be getting a Section 21. Aka a Repossession Order.

Basically, I'm screwed sideways and basically need to find another property, which as and when I have electricity, is what I'm doing. However I have to budget carefully because I only have a certain amount of money a month to put on fuel that has been exacerbated by having to use electric only. Especially since I'm on Prepayment! (I really really am thankful for finding Ebico).

I'm a social butterfly like many and my family lives in mid england somewhere, so a bit more of a predicament

I am on the other hand, applying for registered disabled as I don't have that yet. I have an appointment with CAB to help get that done next tuesday. Hopefully that'll be done and dusted soon enough. Hopefully before eviction...


But thanks for the support graygirl


Hi Ravenshade. I do understand about the shortage of funds when unable to work. It's almost impossible to survive especially in these winter months when you need the heating more than ever. I am happy you're going to get help from the CAB, they are very good. I hope you will get some more help very soon. Your application will be successful. Lets hope it you do not have too long a wait.

Another thought just came to me, if possible, try calling your energy supplier and let them know you suffer from Raynaud's and ask if there is anything they can do to make your energy bills a little lower.

There are shemes funded by the Goverment to help with energy cost for folks on some benefits and who are vulnerable, ie Incapacity, DLA and Income Support. Let them know you are a tenant at your address. You never know unless you ask and it costs nothing to do so. If I think of anything else that may be useful to yourself, I will let you know. Good luck in your seach for a new and warmer home. I hope that will find it very soon. I'll be thinking of you and wishing you all the very best. Let us know how you're doing via this RSA website.


I'll check, but I use a company called Ebico, which I believe for prepayment meters are the cheapest around and they do a one size fits all policy!

Thank you!


Sorry for your nightmare housing situation. It sounds awful and I hope you get something resolved. In the meantime, good luck with keeping warm. I suggest spending a lot of time in your local library - it's warm, you can use the computers, some have wifi that you can hook your own laptop to and it saves on your own electricity.


>.> I Can't even get to my local library *wails* For the exact same reason I can't get to my doctors actually. I either have a 800 meter steep hill to walk down with numb feet and numb hands or I'd have to spend £3 every day, to get a bus that goes in the opposite direct, to catch another bus to get in and then back the other way when I wanted to come home.

I happen to live almost on top of one of the ridges in the south wales valleys and the doc/library is at the bottom. To be perfectly honest, summer time, this isn't much of a problem and if the hill wasn't so steep I'd actually be able to manage it anyway *sniff*. I swear I'm pressure sensitive!

But never mind that. I do have a local community centre that I spend time at, but they're not open all day everyday. (Come to think of it, neither is the library...what kind of back water hole do I live in!?)


sorry to hear about your trouble ravenshade a few hot water bottles are great for the cold spells too saves you if the heating is expensive good luck chin up


I don't know about Wales, but in England, where I am, British Gas have been very helpful. did you know they have a Trust Fund that will help you pay your Gas and Electricity bill if you're struggling. Also Citizens Advice Bureau will help you find a Charity that will help you pay for it. Age U.K. also has a few answers about Charities that may help you. There is also a Budgeting Loan you could try from Direct.Gov. If you are a woman, there is an organisation called S.A.L.R.C. that helps women in reduced circumstances. They have been wonderful to me. There is lots of info out there. Do searches on your Computer. I'm sure there will be help 'somewhere' and wish you the best of everything. You really are having a hard time, but there must be a remedy to help money-wise! Best of luck!


I also bought a cheap exercise bike that you can use sitting in your chair. This helps the circulation problem.


Hi Ravenshade.

How are you doing? Did you manage to go to the CAB this week? I hope you managed to get some help and advice. keep in touch, let us know how you are. Best wishes.



*cough* So far I haven't had anything to write about. Nor half the time the capability but aside from that.

I am...erm...*avoids question like a professional politician*. I did manage to get to the CAB however so I have had assistance without DLA form. Though, tit for tat, the Environmental Safety Officer came round and has effectively threatened to condemn the property I live in. Told him to get out and that I never wanted to see him again, in the politest way possible. I dun wanna be out of a home that quickly! :(

It's a bit like how much you want to see the next doctor and they're saying, "I think we're gonna have to keep you in over night". And you're thinking, 'but but...who'll feed mittens?' That kind of, I never wanna see you again :) .

Secondly, someone's decided to start spreading lies about me in the community. I'm so glad I'm planning on moving. -_-; I might still have to take it to court.


I can sympathise with the heating issues and use of pre-pay meters when you're trying to get by on less money than you need to pay all the other bills.

We got into bother some years ago when I was unable to find paid work and was working as a volunteer, which then stopped me from signing on as they said I was working, long story but when I've then tried to claim benefits I've been told I can't have them as I don't have the contributions needed ! We got into debt with the fuel bills and they said we had to have pre-pay or they would cut us off. The debt has been repaid since, but we dare not go back to 'normal' meters.

We have our own house and have gas fires in the two downstairs rooms with gas wall heaters in the bedrooms and bathroom. The gas fires were here when the wife moved in 30 years ago and she had the wall heater put in 25 years ago. I've turned down a 'free inspection' as I don't like the thought of the heat being replaced with yellow stickers. We can't afford to replace anything.

I was awarded lower rate care DLA in November and I'm awaiting a tribunal for mobility DLA, got a letter saying 29-33 weeks waiting time :( I have argued my case with the energy company about the Warm Home Discount scheme, they have a 'broader group' they can add people to that don't qualify automatically. They are supposed to have sent out some paperwork to fill in, but it's not arrived yet. Even so, that's the scheme that pays £130 in March, some use to pre-pay customers who can't afford to be putting the £10 a week, or whatever it's supposed to be, into the meter. Those paying quarterly are fine though, it comes just in time to pay their winter bills.

We budget carefully for food, the essential bills and energy. I'm stuck at home with a chest infection most of the time, and can't get out much anyway. I have a disability bus pass, but can't walk to the bus stop without stopping to get my breath a couple of times, which is not good in cold weather as I have got 'stuck' before now, been unable to get my breath and can't even get back home, like 25 yards away! It took me nearly an hour, on my hands and knees. It sort of puts you off trying again.

The gas fire goes on for half an hour or so at a time to air the room, then has to go back off again, otherwise the credit will not last the week. If the temperature drops too much I put it on for half an hour again. The rest of the time I'm wrapped up in sleeping bags and fleece blankets with a hot water bottle between my feet.

My wife works, she's a home carer, but it's not a fantastic wage. It goes up and down too as people she goes to will be taken to respite care, into hospital or even die, so she loses calls through that. The company she works for try to get new clients all the time but it can be worrying if she gets cut back to half of what she normally gets through no fault of her own.

I get a small personal pension and with the combination of bits coming in, we fail to qualify for things like council tax rebate. But, I've applied to the council for assistance under the Disabled Facilities Grants scheme. They come out and assess you, they can supply up to £30,000 worth of adaptations per household if it's shown you need their help.

There's also the npower Health Through Warmth scheme, you don't have to be one of their customers but have to be referred by someone - more info at and

Great fun...


O.o if you're out of paid work, you should be eligible for means tested benefits. Contributions based pays more yes but means tested is still better than 0. It doesn't sound to me as though you had over £16000 in savings. If you're going to stick with prepayment meters, consider comparing against a non-profit supplied called Ebico.

Take up that free inspection. Being cold is better than being dead. You might also be able to claim assistance from the local council or another scheme, ask your local CAB for details. If my gas leak hadn't been spotted, it's likely that by now I would have been dead. I highly recommend getting them checked.

I know the feeling about being put off going outside. You only need to fall down a hill twice to be put off that one. Though I can go further than you, usually about 500m (1500ft) as long as its on the flat. (I live on a mountain in wales...flat :D). I too regularly use sleeping bags and hot water bottles. Though I have to be careful because sometimes I can't undo the damn things for refilling. I don't know how much money you get in total per week or month but it sounds like its less than I'm getting, which is really concerning.

It sounds like you might actually get more money if your wife didn't work, but you would have to judge that for yourself. I don't know how old you both are so you might not necessarily be entitled to the normal benefits anyway.

I'll be taking a look at those schemes, at the moment I'm trying the NEST scheme, which is a wales based version of pretty much the same thing. Though by british gas instead of npower.

I hope that the DLA tribunal goes well for you, you should be able to get at least the lower rate mobilty component as far as it seems to me and medium rate care too. I can't actually figure out why they have given you the low rate, given the medical conditions and how they affect you day to day.

As for sleeping bags... there are things that are more like body suits, usually for fishermen, but they're more highly insulated and enable you to walk around in them. Also you can wear hoodies/jumpers with single pockets at the front where you can store an extra hot water bottle. I have this thick grey thing that goes right over me, it's pretty much the top half of a sleeping bag, with a pocket. or so it feels. That pocket often has its own hot water bottle inside and the hood is an excellent place to put a microwavable wheat pack.

And really do consider switching energy supplies. The big six can take the biscuit sometimes especially if you're only spending £10 to £20 a week.


We just fail the means tested benefits, we've tried :( We got a cut-down award of working tax credits, because of annual income dropping by more than £2,500 over the previous year. Losing a job has that effect. What are 'savings' ?, never had any of those.

The gas appliances are all working fine. I check them over every autumn, before they start being used. We have a carbon monoxide sensor and I always check for leaks too. Being cold could easily convert to death in my condition, But, taking up the free service check would have them condemned due to age. Damned if you do, damned if you don't

I got lower rate DLA care through not being capable of cooking a meal, one of the most basic ways to qualify. I didn't apply for the care component, the ATOS doctor who assessed me at home put all that in his report and they awarded it. The rest is subject to the tribunal, when...

I could do with a new sleeping bag. I put my foot through the corner of the thickest one I normally use. I've sewn it back together as best I can, took me ages :) Can't afford the things though. I've been on to the council, and I'm waiting for them to get round to coming to see me again. They've fitted a second handrail on the stairs and provided a perching stool previously - that took 10 months from asking before someone came... :(

We're both in our 50's, so not able to get some assistance that applies to pensionable age. My pension is a personal one, I had to cash a policy in a few years back as we we;re really struggling. I got some cash, which helped for a while, and now get £100 a month from the pension. I wanted to stop it, as it affected our claim for benefit, but was told you can't do that. We are therefore much worse off !

I've looked at changing suppliers. Pre-pay is all much the same and I have some things in dispute with my current supplier, going through the Ombudsman's office at present. We're putting in something like £30 gas and £40 electric a week.

Believe me, I've gone into all sorts to try and get us out of a financial hole. We're in the trap of would be better off if the wife didn't work but she can't just leave, as that stops any claim dead, and isn't daft enough to do anything to get fired on purpose, which is the only other way.

As and when the DLA gets sorted it should help, but that's months off yet. It seems like we have to survive this winter without central heating, and still a slim chance we'll get the grant for that.


They don't normally condemn them unless they are in a really bad state. Take mine for instance, over 25 years old. It was condemned because it hadn't once been serviced and had rusted right the way through. Though if you know what you're looking for yourself, then I'm not going to argue either way!

Oh crap...not ATOS... >.> yeah. Appeal. You'll do just fine with a large back payment too. That is one company that I consider: "Not fit to work!" It doesn't actually know how to do its job effectively. It doesn't save the government any money in the long run, those that need it just go to a tribunal and win there instead. Over half of all tribunals are successful and last I checked it actually stood at 3/4 for atos. Other companies have much lower over-turns, which skews the statistics a little.

Nah you can't stop payment once you receive it, which is a bit gutting actually. Any sort of voluntary reduction is counter productive to any claim. There are some charities out there they may provide the sleeping bag for you, though there are cheaper options from Asda, ebay and so on which may very well be easier to get a hold of.

I'm not sure if the freecycle in your area has any but it's a good thing to check. Some charity shops may have sleeping bags...but they're very rare. Keep an eye out in the local newspaper too. You can usually access those classifieds online however.

I can think of many ways to get out of that trap. None of them necessarily legal however, though it's a bit of a technical mine field. Depression and stress due to a current extreme situation like your own is not unheard of however. It may even prevent someone from working with the right 'Fit note' as they like to call them. Of course, getting fired on purpose is a bad thing and punching the employer tends to not go all to well, though it does get a person sacked fairly quickly.

Good luck for the DLA tribunal, normally the grants can take a while to filter through as they have monthly or quarterly meetings to make decisions like these all in one day. Though once you've been awarded things start to move fairly sharpish.


I've to call the 'Minor Adaptations Team', aka Social Services, to chase them up on a call I put in over 5 weeks ago. I said at the time it was urgent, I was freezing my socks off and have been assessed, ATOS doc too, as having COPD and Reynauds, so shouldn't be cold. I'm working on them and the energy company on the Health Through Warmth angle. I've been to my GP and had x rays because I can't feel my right leg and foot when it gets cold. That's most days right now :(

The DLA appeal process is ongoing from last June. I got a backdated payment in November when I got the low rate care, I should get backdated for about a year of mobility and whatever other rate care they may award at tribunal, but that's some way off yet. I've said I'll take an early date if they get a cancellation, but only if it's the wife's day off so she can take me in the car.

I've been 'warned' that the appeal could see me lose the award they made previously and then I'd have to apply for PIP instead. I guess they're trying to put me off.

I'd be a bit worried about getting a sleeping bag from a charity shop, on ebay, or through freecycle. Who knows that that little stain is :O I got a couple of the cheap ones from Tesco last year, they're useless. the insulation has separated from the cover and just goes in a lump in the middle. If I had some spare money I'd buy a decent one, plenty of new ones on ebay.

The wife would rather stay in a job, she'd go mad if she was stuck here with me all day :D


Hi Gorden57. It can be very hard to get the help you need and deserve, yet, some folks think we are having a fine old time on benefits. Nothing can be further from the truth. I am so upset to read of your struggles. To me you are not being treated well. You deserve better and pronto. how are you supposed to manage when it takes so long to get a decision. I hope and pray that you receive all the help you need soon. The powers that be try to frustrate and put people off claiming the benefits they are entitled to but just try to be strong and keep fighting for your rights. It will work out. You can call the CAB for help and advice if it's all getting too much and don't be afraid to let friends and family know how difficult you're finding things. Sometimes they want to help if they can but don't know how to in case they cause offence.

I have always been the one to take care of my friends and family so I too find it hard to ask for help. My mum told me off last week for not letting her know how difficult things are financially. She more or less had to forced me to accept a monetary gift which came in very handy. Mum was very upset with me as she wants to help but I won't let her.

By the way, Age UK (formerly age concern) can be very helpful if you give them (your local branch) a call. You don't have to be elderly to call them. You never know until you ask. right? Keep in touch, let us know of your progress.

Best wishes.


Hi Gorden57. Haven't heard lately how you're getting on. Are you receiving proper help and are you managing to obtain financial help? Are you able to keep warm and less stressed. It would be good to hear how you are getting on. All the best for a brighter future.


Time to update this one I think. Sorry, I've had a lot of other things on and I've neglected you all...

OK, heating - social services, aka minor adaptations team, came out. Asked some questions, called me a day or two later and said 'no'. They had assessed me under the Chronically Sick & Disabled Persons Act and the criteria was as simple as you need to be hospitalised regularly to get a grant ! No, I'm not kidding, that's what they go on.

Thinking about it afterwards, I realised they were wrong. I had applied for a disabled facilities grant and the criteria for that is vastly different. So, I had to lodge a complaint, as that is the procedure it seems. I was told there was no appeal and their decision was final, which was incorrect. I've had a visitor only yesterday, an occupational therapist from the council, he's taken more details and will look at other options, including the grant I asked for.

In the meantime, enquiries with the DWP have been fruitful as I found that I now qualify for ESA, 18 months after losing my job. I couldn't get JSA or anything back then as I hadn't enough credits in contribution years, or whatever they assess it on. I've started to get ESA, which may affect the grant application. It's contribution based, so not a qualifying benefit. We had Working Tax Credits on the wife's wages and we think they'll take those off now - giving with one hand, taking with the other...

Back to the first lady from the council, I had a chat with her about the npower scheme, Health Through Warmth. You can't apply for this yourself, you have to be referred by a 'case worker'. She had a look herself and I signed the form, she sent it off and - they got in touch last week as well. Seems the form we sent in was an old one and they have to get me to complete a new one. That's on my desk here right now and will be back in the post on Monday.

They consider a person's health and need for assistance. If they agree they will let me know, we then look at a suitable central heating and boiler system, they only cover 25% of the cost and they do the legwork of asking other charities to put the rest towards.

Strange that nobody is taking into account the energy efficiency angle. By removing 2 gas fires, 3 gas wall heaters and an electric immersion heater and putting in one 'A rated' boiler we cut back the potential of 6 appliances being in use to just one, and use a lot less power. The benefit to us is not only being able to have the heating on more, but it should also be cheaper to run.

It could be that others reading this are in need of heating too, the schemes I've applied to will also look at upgrading old boilers (but you don't get refunds on your marriage license chaps :) ) and more, so it's worth applying. You just need to have a strong will and determination to see it through as they seem to knock back applications very easily.

The CAB in our area are about to close as they are very short of volunteers and their funding has been reduced, the few that are there just cannot cope with the number of people needing them.

I got a new sleeping bag but had to send it back. It was a new one, in sale stock from a major retailer. When I got it I could see daylight through it, the wadding wasn't attached to the seam ! I'm waiting to hear if they are refunding or replacing it. Life eh ?

Still waiting to find out when my tribunal is, I think I worked it out to Sept/Oct based on the letter they sent. Lots more going on here, I'm a full-time magnet for problems I think

At least we've had a nice warm day today, pity it's only the one though, rain due Sunday :(


You may also like...