Brrrgh winter us almost upon us

Reading recent posts it sounds like Raynauds/Scleroderma patients (I refuse to be a sufferer) are preparing for our worst time of year. Our clothing & heating bill must be substantially higher than most folks. I would call upon the association to petition the government for us to receive the max winter fuel allowance of £300 disregarding the number if bedrooms we have. The cost of replacing worn out thermal wear that gets constant wear in the winter & extra kit that we have to keep in cars/office, could be recognised via tax codes or by being VAT free at least. getting it on prescription might be another option. A special Medical tariff from the energy companies perhaps? Let's face it with the obscene profits they make they can afford it. What do other contributors to this site think?

12 Replies

  • Start a petition Madge....

  • Totally agree with the sentiment. But we will probably just be advised to put on a jumper.

  • A medical discount on energy would be the most acceptable option I think. Involve the RSA.

  • I would be in... Every little helps and with these prices going up its madness!!

  • I would defo be in it. Its so hard in summer keeping warm let alone winter. I by hand warmers by the boxes but do admit they r the bees knees of all hand warmers iv tried. But hearing is a joke along with r winter thermals when its a medical condition surely laws should be set to make sure we have what's needed to keep us warm constantly. I also have heart failure and need to look after myself constantly and I'm sure most of u av other ailments as well as raynauds so we should defo get some fundings. Not that anyone cares or listens if we do petition but must be worth a try

  • I agree, can we start a petition. Can it be raised with Ed Milliband as he seems to have pointed out about the Goverments (non)policy in respect of rising energy costs?

  • Great idea Madge - go for it! I would think the simplest option is to petition to be included in the winter fuel allowance as that is already set up, so it is an "easy thing" for them to agree to. I wonder if anyone has an estimate of the number of Raynauds patients there are? I guess the government would need that to estimate the cost of including us, and the number of patients would give them that figure? You have probably thought of this but if not you could start a "campaign" including a petition at this link Do you know if there are any other patient groups that are currently included in the Winter Fuel allowance? (if there is that could be quoted as setting a precedent). Good luck - looks like lots of us will support you.

  • I'd definitely sign a petition, it's unfair enough that we don't get our prescriptions free for our long term condition(s) so I think we should definitely get help for heating and/or warm clothing in winter.

  • Thanks for all the great replies to what was a bit of a rant. I live in Scotland so at least I get free prescriptions & we haven't been hit by the dreadful weather that there's been in the south over the weekend.

    I will get in touch with the Society to see if they can do the research that's needed about other groups who may get medical concession on heating/prescription.

    Keep as well & as warm as you can all.

    My top tip, base layer clothing, alpaca wool mittens & I've taken to wearing my Hunter Wellie liners as socks in the evening.

  • I had a really back attack last weekend. For 3 hours my entire body was as cold as ice. I was fully clothed and turned the heating right up. I then got under 4 ply of covers and wore my long padded coat done up with the hood on. It still took 3 hours to get warm.

    Those who have no close connection to sufferers really dont understand the impacts of the condition

    I dont know what started it as I was not in particularly cool surroundings when it hit.

  • That sound horrendous. There are so many triggers I guess the only way to whittle it down is too keep a detailed diary. However, personally I feel that that bogs me down in the condition. Positive thinking plays a huge part.

    I would really like to see local support groups where you could build up relationships & support networks who you could call on particularly if you live alone. Just to have someone warm up a heat pack or make you a snack or hot drink would be a huge help. I'm convinced there are connections with low blood sugar as well as the ambient temperature & anxiety.

  • Hi Madge. Just to let you know we are going to look into this and then start a poll on here to get feedback, and go forward from there. Thanks.

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