Fuel poverty – Macmillan lobbies parliament

1 minute read time.

I guess I should start with an introduction as this is my first blog post: I’m Jeremy and I work in the campaigns, policy and public affairs team.

I had heard of Macmillan’s campaign to freeze out fuel poverty before I had even started. For a while now Macmillan has been drawing attention to the fact that many people with cancer fall into fuel poverty because of their illness. Evidence shows that people living with cancer are more likely to keep their heating on for longer as a result of their treatment and recovery.

A new Energy Bill is currently going through Parliament which will make energy companies give more support to vulnerable people in order to help keep their energy costs down. Since the Bill does not explicitly set out who will benefit from this new support, the campaigns team wanted to try make sure that the most vulnerable cancer patients would be included in any plan. It was decided that the best way to do this would be for the team to go down to Parliament and talk to as many MPs on the committee as possible.

We were absolutely delighted by the response we got. A couple of days after our visit MPs from all parties spoke about the issues cancer patients face in regard to fuel poverty. In response the Minister said he would meet with Macmillan to discuss the issue further and that he would consult over the summer as to which groups will receive this new support.

This represents a significant step forward but we still need your help, if you haven’t signed our pledge please do.

Have you had to turn up the heat this winter? If so please tell us your story.

Anonymous
  • FormerMember
    FormerMember

    Hi

    We have used more gas this winter so far ,as my husband who has never been a person who feels the cold is now terminally ill with oesophagus cancer  and finds himself feeling constantly cold,so I am dreading my next heating bill

  • FormerMember
    FormerMember

    Hello We too have had to have the gas on for longer periods as not only does my husband feel the cold. We need to have Marie Curie nurses in during the night to look after him and cannot expect them to work in the cold.

    Teri

  • FormerMember
    FormerMember

    I have just received a letter from Angela Eagle MP via my local MP(whom you contacted on my behalf when I signed your pledge) and in it Ms Eagle says that it would not be viable to give cancer patients the same winter fuel allowance given to OAPs as OAPS are vulnerable in winter whereas cancer patients are vulnerable all year round? The letter also goes onto say about other benefits that are available which are primarily income support based but many patients and their families do not get income support so do not qualify. I do intend to send the campaigns team a copy of this letter as I found it to be like everything else to do with cancer patients - they promise many things but when a private citizen asks they respond with something like above. These MPs have no clue what it is to have to live like we do, they do not have to beg and as much as I wish Macmillan sucess (I was one of those you asked to tell our stories to the press when you started this campaign last year), I feel really despondent by this letter and feel that it is a lost cause for many of us.

    Ray

  • FormerMember
    FormerMember

    Firstly I wanted to express my thanks to all of you for replying to the blog. Please remember you can always look on our website and call our helpline for more information and support:  0808 808 00 00  

    I thought you would be interested in some recent developments on fuel poverty. A completely different committee of Parliament are holding an evidence session on all aspects of fuel poverty and they have come directly to Macmillan to ask us to give oral evidence. We are preparing for it now and to make our evidence as strong as possible we would really value some of your stories which illustrate the need for further support for cancer patients in fuel poverty. If you want to please just post your story below.

  • FormerMember
    FormerMember

    I was wondering if there had been any progress with this?
    Winter is just around the corner (sometimes feels as though it is already here brrrr) and as it approaches I naturally worry about the extra costs it brings with it.

    My story is probably fairly typical of many others here and not very interesting to be honest.

    I've been ill with other conditions for some time (hardly relevant i guess, sorry) and autumn and winter are always a problem for me as the damp and the cold exacerbate my pain due to joint and back problems.  

    I was diagnosed with terminal stage 4 small cell lung cancer with metastases on 04 August 2012, this year.  I am told there is no curative treatment available to me.

     Even the weather we had in Aug, Sept and now October has caused me problems.  When I get cold I feel as though I am 'seizing up'.  The pain in my lungs, back, joints and head all seem so much worse.  I don't want to get out of bed because I know the pain of movement will be extreme.  I use a wheelchair and have a stair-lift but when I'm bad I cannot use either.  I live in fear of cold weather and have nightmares about it snowing.

    The cost of fuel bills over recent years, steadily rising all the time, terrorize me.  This year is even more frightening.  I know I'll need more heat and I simply don't know how I'm going to pay for it.  I have central heating, a halogen electric fire, a gas hob and an electric oven.  I try to keep the heating on for a few hours each day at the coldest times so that the house doesn't get damp.  I've had mold growing on the walls from damp and it seriously affects my breathing.  I try to avoid it returning.

    Since the diagnosis, I'm scared of coughing.  If I cough four or five times on the row, I start vomiting and I have more than enough trouble getting and keeping food or liquids down as it is.  

    I am very lucky and I receive both Disability Living Allowance and the old income related Incapacity Benefit.  That is my total income and benefits entitlement.  I have a mortgage and I pay full council tax as there is currently someone else living in my home because I fall often - someone needs to call for help lol.  That person doesn't pay rent as his life saving contribution to my life is more than adequate payment for a roof over his head.

    I wear many layers of clothing, a woolly hat, gloves, scarf etc. indoors when it's very cold.  I have blankets and shawls to hand to wrap myself in.  The process of 'wrapping up' is exhausting by itself and trying to unwrap to be able to use the commode is a challenge.  Walking or moving with the extra layers is just too flaming taxing.  I'm reduced to tears of frustration and fear far too often.

    I don't want to whinge on and on but I truly don't believe that the rule makers and politicians have any real idea of what fuel poverty (or poverty of any kind) actually means in the real world.  I'm better off than many and I'm truly grateful and I do count my blessings.  For the purposes of this campaign - the dark side must be brought into the light, hence the long whinge.  I could go on but you're probably asleep by now.

    Thanks for the campaigning.  I hope one day somebody listens and is able to do something right.