The big issue surrounding energy suppliers hiking up energy bills has made me even more conscious of the price Raynauds sufferers pay for having this illness, especially Scleroderma sufferers. All that medication; hospital visits for Iloprost infusion ; and the extra warm clothing etc; etc; I am wondering if it is not time that the issue of our heating bills is raised with the government to put pressure on energy companies to reduce the cost of warmth for us. When my family are comfortable with the thermostat set at 22 , I am not comfortable in my home unless it is set at 25. And I understand it is actually dangerous for us to be cold. I suppose minority illnesses do not figure very largely, but I think this is a poor excuse. What do others think ? Should we band together and do something about it, or put up with the higher bills and just say it goes with the territory so to speak?
This one is about keeping the home wa... - Scleroderma & Ray...
This one is about keeping the home warm enough.
Hello romulus that is such a good idea, my heating is already on 24 hours a day as I can't afford to be cold. I was diagnosed with scleroderma two years ago and had develop lung disease I also have Raynauds. So what is the plan>
Hello Queen, thanks for responding. Well, how to put the plan into action is the big question. Should we write individually to the minister for energy ; Petition en mass; Although I have signed petitions on-line, I do not possess the skills to draw one up, and only have my iPad. So though I am perfectly willing to put in the spade work, I am waiting for members of the site to come up with how this plan must be effected for the most impact. If any one has done this sort of thing before, I would be grateful for the benefit of their experience please ?
the cost of keeping the home warm is outrageous for a lot and for us who have no choice but to foot the bills or become seriously ill it is more so still.
My best wishes to you. Let us hope for more posts to get this thing off the ground.
It's a real political football - I think the Government is panicking about what to do as the election isn't that far away and everybody is furious about energy prices. A petition through something like Change.org would need lots of signatures (20,000+? - I'm not sure) to get noticed. There may be other petitions on energy to link up with, though.
Writing to your MP is a good idea as they are supposed to respond to you individually and pass information on to the relevant minister. It's easy to get your MP's email address through the net if you don't know it. It also puts pressure on them as they want to get re-elected. George Osborne is supposed to be saying something about cutting energy bills in his autumn statement next month. A bit of pressure on MPs now, particularly coalition members, will keep the heat on the issue (sorry about the pun).
I'm going to email my (Tory) MP this weekend - I think he's getting a bit fed up with me, but he needs to know what constituents think. I'll report back any response that I get.
Thank you for responding Brunnhilde. Yes, I recall that it is a heck of a lot of signatures required to petition with any chance of success being possible. And of course our disease being rare, we would probably not get enough signatures , as you infer . But it is indeed an issue for political parties to kick about ahead of a general election. I am a little surprised that the Scleroderma Society has not taken up our cause really. We are stronger together, and they could speak for us all. ( Perhaps they will? ). But I suppose writing to our MP and/ or George Osborne is the only option open to us at the moment. I fear this may be a futile exercise but it is worth a go. There probably is not going to be a better time than right now .
If members or indeed The Raynaud's/ Scleroderma Society are looking at the possibility of a campaign for extra help with heating for those who need to keep warm, well the very best of luck with this present Government! Sadly all disabled people are very much 'feeling the squeeze' rightly or wrongly at the moment due to the push to save money on the welfare bill.
In my mind the most effective course of action would be a campaign on behalf of those who need help to be included in the present winter fuel payment scheme, this scheme provides a payment of £200.00 annually for qualifying pensioners and £300.00 for those over 80. I have always thought it unfair that all those at risk from the cold don't qualify for this allowance.
I have already insulated my home to the hilt, dress in layers,( often looking like I am about to ski down a black run in the Alps!) but still need the heating on most times of the year.
I have a legal background albeit retired early due to Sclero but would be happy to begin/join a campaign. Despite my 'bobby hat' I am not to be messed with!
Thanks for replying Bluesgirl. So far, as you can gleen from the input from other members to date ( early days albeit) it seems that so far the best we can do is write to our respective MP to raise awareness of the importance of heating our homes . I am starting to feel pangs of guilt now, as a lot without our disease also deserve to afford to heat their home and ideally , I want this for all. If I heard correctly , 20,000 deaths last year is attributed to those poor souls being too cold . This is a disgrace in what still is considered to be a wealthy country. And I am with you in not expecting anything but lip service from this government. Perhaps it is a thought to also write to Ed Millaband as well to make the three major parties aware of our extra financial outlay due to Sclerodermma and Raynauds.
As I always say in these posts , I am very grateful for knowledge and expertise greater than my own . This should not be too difficult! Lol.
Thank you Brunnhilde. I will definitely be contacting mine.
Contacting the Govt is a total waste of time because frankly they don't care. Getting in touch with the R@S society is,I believe a good idea,together with giving our views to Ed Milliband.
It is a sad fact that society does not recognise how dangerous and indeed fatal Reynauds and scleroderma is.This also is true regarding the elderly,disabled etc, and how vulnerable they are. This winter will witness a catastrophy involving so many deaths(possible in the hundreds of thousands)that the rest of the free world will be appauled by. The damage will have been done then and it will be too late.
As individuals and as a group(including every like-minded citizen in this country), should register their opposition. I shall send E-mails to all and sundry to register my views.That is why we have a democracy.
Sorry to sound so gung-ho, but the British way is always to'keep a stiff upper lip', and soldier stoically on. Its about time that mentality changed.
Hope this has given you some ideas. Good luck.
Thanks for responding . A very positive message you have conveyed, and I am really pleased so many of feel the same way. We do indeed put up with grossly unfair policies and lives are being unnecessarily lost through cold . So are you thinking to contact The Sclroderma Society as well ? They could help us couldn't they? You are sounding like possessing the fighting spirit, and it is good. Gung ho is ok. As Che Guevara said : ". Better to die fighting than live on your knees" .
I am going in for Iloprost early tomorrow and will be home on Friday. So I will catch up with all this after then.
I've had reynauds from birth (although it took them 3 years to diagnose), it's also secondary to scleroderma, I'm now 19 and waiting for a hospital appointment because my symptoms are getting worse by the week - yet I physically cannot afford to put my heating on, this is the first winter I've lived with my partner so he doesn't quite understand my need for heat either!!
It's terrible tho, I'm currently dragging my 15 tog duck down duvet around the flat to keep me warm during the day - all because our flipping energy bills are so high!! I'm sorry, rant over, I've just had enough of feeling like its MY problem so I have to put up
I totally sympathise. Now I am going to sound like an Agony Aunt here, but I am soooo annoyed with the lack of understanding from partners of Raynauds sufferers. I was only last week next to a woman in her 50's , married for many years, whose husband was totally unsympathetic to her needs. She told me she harboured resentment and can no longer love him as she used. You are very young. Men are not generally 'careers'. They are more programmed to being cared for and assume priority status and above the needs of the female. But this is a self elected status, and husbands or partners have no excuse to continue 'unable ' to understand. The fact that they do continue to be ignorant is because it is not in their interests to grasp the problem . All it takes is to force-feed them with the facts and how vital the need for co-operation is if you are to avoid serious consequences arising from lack of needs. If they still refuse to show no regard, then I leave it to others to draw their own conclusion about the viability of the relationship. Your health matters too much to be ignored. My sincere wishes to you and good luck.
Not only should we get help with our heating, but Scleroderma should be on the list of conditions that you get your medications for free. Thank goodness for the pre pay plan or we would be in the poor house. And how many times have we all been prescribed something that just doesn't work and we are given something else and something else. It all adds up. I think it is something that the Raynaud's and Scleroderma Association should look into for us as well. They get the support and funding for research which is good, but some help on the home front so to speak would be a great relief for all of us. And I am willing to help out if I can to get things noticed.
Hello. Glad you are up for this too. The more the merrier. What has been decided so far is to pop a letter to one's MP and voice our opinion to The Scleroderma Society about this issue. We shall see what transpires if anything! It is difficult to feel positive all the while the so called Austerity policies are in place. But it shouldn't stop us from pressing home the point. Nothing ventured nothing gained.
I totally agree that we need to band together to get help with heating. People really don't understand what the cold does to our well being. I am lucky my husband stays as cold as I do.
Do you feel the cold more than folk who don't have ssc?
Is this really Raynaud's?
Idiopathic Pulmonary Fibrosis with Scleroderma
Wehoo the sun is out over here in the UK - the flip flops are on, the toes are blue ;)
