Viewing 18 posts - 1 through 18 (of 18 total)
  • #75109
    Cost Of Living With MD…..

    At the muscle meeting on Saturday the discussions led me to finding an old
    publication by the MDC about the increased living costs that people with MD face. It
    is particularly pertinent at this time when everyone feels their cost of living is too high.

    http://www.muscular-dystrophy.org/assets/0002/0463/Cost_of_Living_with_Muscle_Disease.pdf

    The point was made that as your MD care needs usually come on gradually you do not
    realise the extra costs involved.

    Never even thought to work out what the CPAP machine running all night and in daytime costs
    or add up the taxi fares, cleaning costs, mobility aids, and cost of adaptations and services. On a
    point of balance that is what our DLA is for, but on a further point of balance that is what it is, not
    some gift of largesse by an overgenerous state.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #92083
    Re: Cost Of Living With MD…..

    “Disabled people are twice as likely to live in poverty
    as non-disabled people, and many people with a
    neuromuscular condition experience severe disability,
    which can leave them unable to work, requiring
    extensive adaptations to their home, facing higher bills,
    and not receiving enough support to meet these costs.”

    …wrote Robert Meadowcroft in 2010.

    He goes on to make a series of thirteen recommendations that seemed eminently
    sensible at the time. Now with subsequent events they are glaring necessities.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #92084
    Re: Cost Of Living With MD…..

    The big question currently is the cost of power.

    The report shows that the power companies at the time had a lot of “social tariffs” where
    people on DLA could get savings of 20 % in some cases.

    Just when it is needed the most these initiatives seem to have evaporated.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #92085
    Re: Cost Of Living With MD…..

    Timely question as I have been working out what I spend on taxis now I’m less able. I was also wondering how much electricity is used and costs using my BIPAP machine overnight more so now with my daytime use. Im led to believe those on oxygen at home get a rebate on their fuel costs as was talking to another patient the last time I was in hospital who got this.

    Campaign material do we think?

    Regards
    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    #92086
    Re: Cost Of Living With MD…..

    @miracle77 wrote:

    Timely question as I have been working out what I spend on taxis now I’m less able. I was also wondering how much electricity is used and costs using my BIPAP machine overnight more so now with my daytime use. Im led to believe those on oxygen at home get a rebate on their fuel costs as was talking to another patient the last time I was in hospital who got this.Campaign material do we think? Regards
    Gill

    So true………Taxi’s are make a fortune out of us. When you hit “The Wall” it is a case of pay anything to get home fast !
    We ought to have shares in the firm by now.

    Power companies will not be giving us discounts if they are looking to add 10% every year.

    Hot water bottles are good !

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #92087
    Re: Cost Of Living With MD…..

    Trying to work out extra costs of disability in last couple of years :-

    New seated shower £ 750
    New Rollator £ 80 (supplied one had no backrest)
    Removal of Gate £ 120
    New Safety Rail on path £ 60
    External Grab Rails £ 40
    Internal Grab rails £ 85
    Removal of Oven and Hob £ 180
    2 x High Backed Chairs £ 150 (second hand)
    High Backed Sofa £ 65 (second hand)
    Taxi’s – numerous – hundreds of pounds
    Commode £ 45 (second hand)
    2 x seat for 2 basins £ 60 (second hand)
    Extra Electric costs in cold winter and for person who is at home all the time.

    just five minutes thought, there is more !

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #92088
    Re: Cost Of Living With MD…..

    Bathroom stool = £150
    Shower chair on wheels = £420
    Wet Room conversion = £3,500
    Taxi costs each way to nearest necessary destinations £7 to £20

    Cost of extra heating, cost of electric blankets, cost of recharging equipment, cost of getting from AtoB, cost of carers, etc.

    My snotty Dentist remarked, when I said I pay for dental treatment, that when NHS charges were introduced the DLA increased their components to account for it. My facial expression must have been priceless!!

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #92089
    Re: Cost Of Living With MD…..

    Amongst the things I have bought from my DLA are my through floor lift which was installed in March 2012 at a cost of £8300, and which I had to have repaired last week [now out of guarantee] at a cost of £189. That’s my most expensive purchase but there are others [stairlift, bathlift, wheelchairs, commodes, profiling beds, etc.]

    Sybylla

    sybyllascarlett
    Participant
    Posts: 383
    Joined: 07/02/2012
    #92090
    Re: Cost Of Living With MD…..

    Let us not forget the increased day to day costs …..

    Gas/Electric because we are home all day and need to keep warm
    Small bottles – having to buy smaller bottles of ketchup, mayo, mouthwash, shampoo, shower stuff etc because we do not have the strength of dexterity to handle the average/larger sized containers
    Small packets – as above but things like margerine
    Ready done stuff – the microwave single portion packet of things because we struggle with pots and pans.
    Soft drinks/milk – buying cartons or cans because we cannot handle the standard sized containers.
    Bread – buying presliced as we cannot handle the knife
    Veg – agai dangerous knife handling forces us to use the prepared veg
    Meat – buying the diced amounts because we cannot slice and dice ourselves

    okay so some of us can get a carer, family member, partner to do the slicing, chopping and dicing but there are times when we have to fend for ourselves and plastic dinners are not always appropriate [or affordable]

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #92091
    Re: Cost Of Living With MD…..

    @amgmod wrote:

    Let us not forget the increased day to day costs …..
    Gas/Electric because we are home all day and need to keep warm
    Small bottles – having to buy smaller bottles of ketchup, mayo, mouthwash, shampoo, shower stuff etc because we do not have the strength of dexterity to handle the average/larger sized containers
    Small packets – as above but things like margerine
    Ready done stuff – the microwave single portion packet of things because we struggle with pots and pans.
    Soft drinks/milk – buying cartons or cans because we cannot handle the standard sized containers.
    Bread – buying presliced as we cannot handle the knife
    Veg – agai dangerous knife handling forces us to use the prepared veg
    Meat – buying the diced amounts because we cannot slice and dice ourselves
    okay so some of us can get a carer, family member, partner to do the slicing, chopping and dicing but there are times when we have to fend for ourselves and plastic dinners are not always appropriate [or affordable]

    Spooky…….
    I was dialing in today to add to this thread and say exactly the list of things that
    AMG has said above.

    Thought I was going to be revealing really clever insights on my hands not being
    able to chop anything, them removing my oven and hob on safety grounds
    and being forced to use microwave stuff and go for smaller packets and
    the packets of already prepared foodstuffs. Not being able to buy large heavy
    packs…yada, yada, yada.

    She done it already though !

    Delivery charges on everything.

    All the expensive way to live.

    If I wasn’t so well balanced I might think the Corporaticos were making money out of us.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #92092
    Re: Cost Of Living With MD…..

    don’t forget having to buy clothes and gifts online

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #92094
    Re: Cost Of Living With MD…..

    @taungfox wrote:

    Spooky…….
    I was dialing in today to add to this thread and say exactly the list of things that
    AMG has said above.

    :shock: :shock: :shock: Spooky!!!

    We’ve been spending too much time together :mrgreen:

    @taungfox wrote:

    If I wasn’t so well balanced I might think the Corporaticos were making money out of us.

    New word Corporaticos :yes:

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #92095
    Re: Cost Of Living With MD…..

    @littlestef wrote:

    don’t forget having to buy clothes and gifts online

    Abso-bloomin-lootley!

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #92093
    Re: Cost Of Living With MD…..

    ok peeps and AMG. lol. last week I filled in an online survey about fuel poverty and disability. the next day I received an email a Richard Bevan from York Uni, asking if he could speak to me over the phone. I replied sure, no probs.
    today, Richard rang me and he asked me allsorts of questions. this went on for roughly 20mins. after which he said we are paying people £20 for taking part.
    now I hope that the powers that bee don’t mind but ive passed on the site address and Richard is really keen for MDC members to take part.
    hopefully hes as good as his word and our members can make a little bit of pocket money too.
    P.S ive asked for him to donate my £20 to MDC.

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #92096
    Re: Cost Of Living With MD…..

    ok peeps and AMG. lol. last week I filled in an online survey about fuel poverty and disability. the next day I received an email a Richard Bevan from York Uni, asking if he could speak to me over the phone. I replied sure, no probs.
    today, Richard rang me and he asked me allsorts of questions. this went on for roughly 20mins. after which he said we are paying people £20 for taking part.
    now I hope that the powers that bee don’t mind but ive passed on the site address and Richard is really keen for MDC members to take part.
    hopefully hes as good as his word and our members can make a little bit of pocket money too.
    P.S ive asked for him to donate my £20 to MDC.

    stefan

    littlestef
    Participant
    Posts: 526
    Joined: 04/10/2011
    #92097
    Re: Cost Of Living With MD…..

    @littlestef wrote:

    P.S ive asked for him to donate my £20 to MDC.

    That’s good of you Stef.
    Syb 8-)

    sybyllascarlett
    Participant
    Posts: 383
    Joined: 07/02/2012
    #92098
    Re: Cost Of Living With MD…..

    Hi All

    This is such an interesting – and shocking – discussion thread. Thank you so much, littlestef, for thinking of the charity and donating your £20 – that’s very kind and generous of you.

    Kind regards
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #92099
    Re: Cost Of Living With MD…..

    @littlestef wrote:

    ok peeps and AMG. lol. last week I filled in an online survey about fuel poverty and disability. the next day I received an email a Richard Bevan from York Uni, asking if he could speak to me over the phone. I replied sure, no probs.
    today, Richard rang me and he asked me allsorts of questions. this went on for roughly 20mins. after which he said we are paying people £20 for taking part.
    now I hope that the powers that bee don’t mind but ive passed on the site address and Richard is really keen for MDC members to take part.
    hopefully hes as good as his word and our members can make a little bit of pocket money too.
    P.S ive asked for him to donate my £20 to MDC.

    :yes: Nice job! [the passing on of info and donating the £20]

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
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