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What are your experiences of extra costs as a disabled person?

Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
edited January 2018 in Disabled people

Life costs more if you're disabled, disabled people and their families face many extra costs. These extra costs include expensive equipment, higher energy bills and sometimes paying over the odds (e.g. with insurance).

two people sat opposite drinking tea

So we would like to ask you what are your experiences of extra costs as a disabled person? It would be great to hear about your real lives and how disability affects you financially.

Senior online community officer


  • MarkmywordsMarkmywords Posts: 400Member Pioneering
    edited January 2018
    Due to being alone, I have to get tradespeople in to do even the most simple things.

    I pay regularly for gardening and cleaning. This year I expect to pay to have some home maintenance and decorating done too.

    Also I have a ridiculously impractical car as I don't have the mobility to get into a small, efficient one.

    Recently I received a refund after cancelling an insurance policy. They sent a cheque for a little over £10. I decided to throw the cheque away as the effort and cost of getting to a branch wasn't worth it :/
  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    @shonalouise wrote recently about having to buy pre-packaged food - this is a cost people often don't think about for disabled people!
    Senior online community officer
  • WebbisWebbis Posts: 9Member Connected
    DannyMoore - I wondered if you'd come across these pods: http://www.creativecareltd.com/products/
    I saw them at an equipement show and they looked quite robust.  they might help to keep you from destroying your bedroom while you sleep.

  • mikehughescqmikehughescq Posts: 3,563Member - under moderation Disability Gamechanger

    Paying for online shopping is far easier than going out to a major supermarket to shop where my VI means I will have trouble finding the right aisles and then more trouble finding the right items and prices. Takes me way longer than anyone else and I can't do a shop any bigger than I can carry as I'd be walking or on public transport. Therefore, online shopping via a monthly pass.

    Having to pay for an induction hob because I often can't see gas on a low light.

    Paying for a very large screen TV because it's the only way I can see the TV and sit on the sofa not the floor.

    Again, having to pay people to do jobs around the house or garden I would love to do myself but can't because I have neither the focus nor the precision. Currently that's a plumber, roofer and upholsterer.

    Having to buy three pairs of spectacles because I can't use varifocals.

    Having to pay for Shuropody to cut my toenails because although I can see them I can't cut them with enough precision to do a good enough job to avoid them splitting. I don't wish my wife to do this as she's my wife not my carer.

    Buying extra supplies of symbol/identification canes because of the number of times members of the public see me late and decide that acceleration right in front of me is the best thing for them and thus hit my cane and either bend or break it.

    Hardback books because the font is smaller in paperbacks and backlit e-readers antagonise my Ocular Albinism if I try to read for as long as I would want to.

    A spare monocular for those occasions when someone brushes past me brusquely in a crowd and rips my NHS low vision assessment provided monocular from around my neck without my noticing.

    More clothes than I would ordinarily want because of my ability to spill things on my clothing and not notice.

    Endless supplies of Apple cables for those occasions when I damage them by being unable to insert them properly or take them out without ripping them. Extra plugs and chargers and an expensive battery recharger so that I can navigate unfamiliar routes without worrying about losing battery power completely. Also needed for staying in touch when public transport messes up my route or I get lost and need an actual human not just an app.

    I'm sure there's more but these are just the first which sprang to mind.

  • TopkittenTopkitten Posts: 1,031Member Pioneering
    Live alone and have to pay £15 odd for a cleaner each week.

    Gardner and odd jobs around the house varies depending.

    I have to have a large car even though it's Motability so it was £800 up front and will be replaced after 3 years. A further £200 for a subsidised hoist and fitting. £2700 for an electric scooter. £600 for a spare battery. £40 for the damage when I took it on a plane and £75 for a service after 2 years. £60 for my first old second-hand wheelchair. £530 for a new replacement wheelchair that was much lighter. Fuel costs for the larger car.

    I did try to get travel insurance late last year but was refused.

    Most of it apart from doing most of my shopping in a small store rather than a large one, so prices are higher.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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  • TopkittenTopkitten Posts: 1,031Member Pioneering
    I guess I forgot that instead of retiring at 66 I was forced to leave work at 49. I have no idea how much that cost me but, when I worked in London 20 years ago, my salary was £40,000pa plus bonuses and additional support extras amounted to another £10,000 to £15,000 pa. Imagine how much I could have earnt including inflation.

    It was replaced by ESA and DLA but now my mother has died I no longer get those until the money is mostly gone (from the sale of her house and split with sister). I'll also have to fight and prove I haven't wasted money which I guarantee they will say I have.

    I will probably go way below poor.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • NystagmiteNystagmite Posts: 609Member Pioneering
    For me, it's a lot of little things. But they soon all add up:
    - ear plugs
    - lock laces (because no-one seems to do trainers with velcro for adults)
    - wet wipes / nappy sacks

    I've also had to buy things like noise cancelling headphones. my larger laptop 

    The extra costs of being at home all day and the extra washing.

    The fact that if I want to go away, (I don't drive) I've usually got to pay for the train + hotel. Unless I want (which I don't for my own safety) to be getting a train really early or late.

    If I want to go to a sitting down gig, the eats where I can see, are sometimes more expensive.

    Having to buy non-prescription medication because my prescription medication causes all kinds of problems.
  • izaiza Posts: 447Member Pioneering
    edited January 2018
    The additional cost I am paying at the moment due to my medical condition is : heating flat as I am house bound and I am sensitive to cold 
    and private dentist care (once I visit my home country). 
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello Everybody reading all the costs of being disabled.  I agree I have extra money I try to put away for the garden.  One of the things I had to do is to make use of the NHS.  I used to buy footwear for me.  Just been now to order new boots.  I know all I did was enquire to my Doctor who sent me to a consultant.  Who said yes so now I have new boots every two years.  Please can I suggest those who find costs expensive have a chat with your doctor.  I know ordered Velcro ones.  @Nystagmite is worth enquiring your doctor.  Been into clinic today.  Asked about types of footwear.  I have to have soles put in all footwear I have.  Can have any colour of footwear. @mikehughescq I read you piece on paying for a chiropodist or podiatry.  I again would have a word with you doctor I have toes missing and have fallen arches and other issues with my feet.  I can not cut my nails and the rest.  So when I was looking around got in touch again with my doctor.  Consultation again and then have feet done on the NHS.  I believe some area do home visits and also found this out so do certain opticians.  I am only trying help here.  Do not like to see my friends in the community paying for certain things when I know there are possible solutions.  All of us should be supporting each other.  With ideas and solutions and problem solving.  It is not interfering just being there for each other with answers.  I do understand every one problems and costs.  I also have problems with costs and especially for my mental state the big one for me is energy costs.  Solved that with smart meters.  I hope it works out.  Got heating off now will have to put it back on now.  Getting cold.  My other costs are extra on just keeping a house clean.  Got rid of hoover and have vinyl flooring all over house.  Lot cheaper than carpet.  Get ripped off everytime.  Most days need a sweep can see dust on surface.  I have had to budget constantly since leaving home.  Have to no choice because I do not know the next move the DWP will be.  Just in the past spent thousands on cars before motobility.  Thousands on private rented houses and furniture.  One best thing I ever did was to set up business.  Although folded to illness.  Have business brain and have to be savvy with money.  Living alone extra costs are a nuisance and I know I have been ripped off by so called friends and the rest.  It is a part of being disabled that nothing is disabled friendly as you would call it.  Where are the shops and stores catering for our needs.  Worse for me to find replacements for my kitchen equipment and got blender.  Base cracked on old one had it ten years.  Paying over odds for a lot of stuff.  Especially cooker with a hob top oven knackered outside rusting away.  Microwave only replaced last year.  Did not last long.  Freezer non defrost still working.  TV running into double numbers with those.  Question why does not anything last long anymore.  Says it does this but still paying more.  I hope you all have had similar experiences.    I know I have.  Thank you for reading.
  • mikehughescqmikehughescq Posts: 3,563Member - under moderation Disability Gamechanger
    I am aware it can be done on the NHS but I have elected to pay a small amount every 5 weeks for very specific reasons i.e. the Shuropody shop I use discovered a significant problem with my feet and gait and fixed both so I already have faith in their service. I have to travel into Manchester to get this done. That is a good thing. It gets me out and gives me the excuse to do other things. I could stay local and get free treatment on the NHS but that runs the risk of becoming ever more insular.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @mikehughescq Thank you for reply.  I go to local to health centre then use the day to go shopping or anything else.  You are right gets you out.  I wonder if it possible an idea to have a website through SCOPE set up .  I do not know much about these things.  So people with solutions to every day problems can advise our community.  Put down their tips and advice for every day living included equipment, gadgets to help and aid our community  I would assume they would be a disclaimer involved.  I do not know.  If some one advises on a particular item of interest.  Long time ago I wanted to set up a company dealing in such things.  Also information on all aspects of disability.  It would involve walk in centres and people could come in go on line and the rest is history.  Sorry it never got off the ground two reasons banks and finance.  I had my own money and business plan but with hindsight was not very good mentally.  When you have run one business and have other ideas.  Then it goes down hill the lack of co-operation from the powers that be like banks, government have the last word.    Keep dreaming.  Anyway lots of information out there it is finding it.  Nice to talk to you. 
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    Ha ha, my brain has completely gone to pot. Thank you @thespiceman for reminding me of the home stuff. I cannot sit in a normal chair so I have to use a riser recliner. This one cos £1200 odd as it has to be comfortable enough to double up as a bed at times. Also, when I do use the bed I have to have my legs slightly elevated, hence the electric bed cost over £1300.Then all the little things like 4 or 5 gadgets to pick things up off the floor when I can't bend down. A mitt for use in the shower as I can't grip a cloth properly and even a gadget to wipe my bum when I cannot bend enough to reach. I haven't been able to twist to reach for a decade. Phones in every room so one is always handy. A mobile so I always have a way to call for help if I fall when I'm out of the house. There are so many more little bits and pieces a lot of which are for "just in case" situations. I haven't even considered decorating which, as I smoke, will soon need to be done.

    You are correct though. My biggest fear is that things wont last and will need replacing. I did manage to swap my really old freezer for mum's new one after she died. I do need to sort out a new DVD player though. I thought having a Blu-ray player would be a nice idea when the money from a back-dated payment came through and my DVD player was a decade old but the DVD crystal has burnt out so need to find a way to connect up some other way to play DVD's. The crystal only lasted a couple of years. Ofc blu-rays play fine.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @Topkitten How are you?  Thank you for reply.  I am an old fashioned gent as I say what is DVD player and blue ray is it.  I am still in the dark ages.  I am sorry to ask I know I am behind the times.  Not used to this modern stuff and times.  Spent a fortune on vinyl and the rest.  All went to pay for the outstanding tax bill.  When I had a business.  Any way on CDs found all my favourites music on them last few years or more.  Old days of houses you remind me as I am related to Victor Meldrew and Frank Spence everytime I moved.  All my equipment in the house went bust.  So off me and friend went to Currys to find what we need.  A young lad approached us I had a long list and a budget.  One item he showed me was nearly all the budget.  I spied another guy lot older and wiser sales person.  Agreed to a limit.  Most of still works but scared now getting to that critical point ten years old.  I wanted one of those chairs that elevate you and other things like a bed.  Found out too much and the insurance to cover it all.  Found a community shop run by the county council might be one in your area.  Stock barely used seconds bought a leather settee for under £300.  Normal price double in those swanky swish show room stores on those Industrial Estates you know SCS is it.  Been there with mobiles amuses every one because can not hear the voice on the end.  Have it in a plastic zip bag with plugs and then I can hear but it takes me about five minutes to get it all set up.  By then they have gone.  Have to say if want to ring me send text first.  I know there is a gadget or piece of equipment for every use.   Costs going up on all this stuff we been warned due to Brexit.  Well I do not believe it.  Great to talk to you speak to you soon.  I will find my way out of the dark ages and move on some time .
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  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello @Victoriad Thank you for information.  I never knew this.  Good much appreciated.  I am looking at websites all time to try to get me in the modern world.  Only recently went on line found that supermarkets have own electrical and kitchen websites.  Sorry about I know I am still amazed about what is out there.  You can order stuff then collect.  I am learning all this.  Just me afraid.  Thing is if you go to big stores like TESCO have in store website can order and pay for stuff there.  Just found this out a while ago.  My luxury is to eat well and my one big treat to expand my collection of my music that used to have.  Also might consider this magazine.  I assume it is on line.  Instead of coming through post.  Added expense know it is £3 could be a possibility.  Thank you.  Great to talk to you speak to you soon.
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    @thespiceman Video tapes were replaced by DVD's (Digital Video Disks) and Blu-ray is just an much improved version of DVD's. A DVD player has a single crystal to control the laser to read the disks but a Blu-ray player has 2 crystals, one for Blu-ray and one for DVD's. I knew a lot of the DVD crystals in Blu-ray machines were just cheap ones so I got a good quality unit thinking it would be better.... evidently not. Now the Blu-ray player will only play Blu-ray disks and not DVD's. So I need to sort out something else to play DVD's as I don't want to spend a lot replacing the surround system.

    I started switching from vinyl to CD's in the early 80's so only have a few vinyl left, those I want to convert to MP3 format. I never play the CD's except in the car, play MP3's almost all the time I listen to music.

    I am an old man of 61 though so it isn't age that is the issue, just a matter of research.

    As for me.... I was ill last week and hardly left my chair for almost 4 days. The medication issues aren't helping though. I see the doctor next Monday so hoping he will have some ideas. Fully expecting my third disaster though as bad things always happen in 3's. How I have managed to get this far I simply do not know, I have been living on a knife edge since before Xmas. Still haven't managed to complain about the poor treatment (or lack of it) by the hospital. Just don't have the energy or courage.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • NystagmiteNystagmite Posts: 609Member Pioneering
    edited January 2018
    what has my GP got to do with my difficulties?

    Also, please can you use paragraphs? It's making reading your posts difficult.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @Nystagmite Sorry you mean my posts.  I will try to get them clearer for you.  I have a lot to say.  All the time.  I have to chat and talk have no one to see all week.  Never speak to hardly anyone.  As I explained

    The NHS has a outsourced footwear suppliers for those who have difficulty with finding suitable boot, shoes, trainers.  For those with disabilities.  In my early teens I was spending a fortune on shoes and boots.  So I asked about this at my local surgery.  So the doctor at that time made me an appointment with a company based in the North East called Peacocks. 

     They do a range of footwear to suit all disabilities and problems.  I now use them all the time

      I have just asked for boots with a velcro  straps finding hard to tie laces. 

    I hope you might be interested.  Could be useful to contact your surgery.  That is all. Nice to talk to you
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @Topkitten Thank you for explain all this new high-tech stuff.  Might something to look at.  Trying very unsuccessfully to find the old movies I love.  

    Sorry you sound not good.  Speaking to you last time on positive or negative thought you were positive.  Guess things do change.  I hope and pray some thing will happen all for the good  I know I had a bad day Monday hence my ramblings.

    Life is not easy speaking today to the footwear specialist.  You look alright you are alive and you are here.  What does he know?  I had a stress buster of a shop and am very tired.

    Meds kicking in but it is what he said old age well I am in my 54th  year and feel some days can not move and get anxiety over little things.

    That is why I put some guidance for self if I fall down then I need a way to bring myself back up.  The lacking of energy and the rest try to stir myself, hope you be OK.  Take care and thank for the information useful to know.
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  • mikehughescqmikehughescq Posts: 3,563Member - under moderation Disability Gamechanger
    Ah yes, I forgot the cost of regularly replacing my orthotics; a new symbol cane every few months too after a member of the public decides that accelerating in front of me and over or through the cane is the best thing to do rather than slow or stop. I suppose the cost of an iPad Pro so I can read abs see stuff with minimal scrolling is also a cost. 
  • foxukfoxuk Posts: 93Member Courageous
    Higher costs. 

    I just paid out over £600 for a second hand electric wheelchair. That is a hell of a lot more expensive than a pair of shoes. Getting one provided by the State would have left me housebound for another 6 years. 

    Luckily my PIP award was higher than my DLA and although my increase doesn't start till next month my plastic still works.

    The most annoying extra cost was the over £1500 that we had to pay for a hoist for my wife. I was told that she couldn't possibly manage without one. Told she wouldn't be released from hospital until we had one. To add insult to injury my 'bed blocking' wife would have to wait at least six months for the NHS to provide one. She has used a slide board since signing herself out six years ago and the hoist stands idle in the corner of the room.

    The electric beds cost a lot but at around £300 each we had a good deal.  The best we could hope for from the SS would be a gigantic hospital bed for my wife. This would take up the whole room and I would probably be left to sleep in a chair (This happened to my 80 year old cousin when her husband was allowed home for the last few weeks of his life).

    There needs to be an infusion of common sense into HMGs thinking.

    The cheapest way to get groceries delivered is to either use iceland $35 for free delivery, or Sainsbury's who have many next day midweek slots for £1 which is cheaper than their delivery pass. 

    Amazon Prime which gives free delivery (Paid for yearly) for many but not all of their stuff also gives access to streaming of a lot of TV series and films. Many books are also free. This works out a lot cheaper than buying DVDs and BlueRays or books.

    It would be great if a bunch of Disabled people took over the government. By cutting costs and stopping waste we could raise benefits and cut taxes.

    Necessity is the Mother of Invention!


  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    For me it's things like transport.  I cant drive if I take certain medication that I am am prescribed, and so there are times when I have to take taxis.

    There has been the loss of earnings over the past five years when I was a freelance writer when I couldnt work due to illness or recovery from surgery. Plus the loss of earnings of my husband when hes taken time off to either care for me or take me to and from appointments, he is a freelance photographer.

    I also have to buy certain underwear to protect my stoma and hernias, you get a few pairs free on prescription but not enough and so Ive had the cost of these.

    I have bought certain adaptations for my home to support me, from a stool in the kitchen to shower attachments to clean my stoma.

    There is the extra costs of laundry, my clothes and bedding sometimes get soiled from my ostomy and so need washing more often and on a higher temp therefore costing more.

    I buy paracetamol and supplements that I would struggle to get on the NHS every week.

    If my husband is working away and I am struggling with fatigue, there are times when we get takeaways or convenience food so I can feed my kids.

    There are so many little things like this that non-disabled people dont even think about!!

    Senior online community officer
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @Victoriad Thank you for reply.  I will have a look it is worth it I think.  I know I struggle to find what I need for my own use.  Get worried about am I buying the right thing.

    So much to choose from.  Own supermarket brands especially electrical items do the job but they are cheap.  Once bought enough blenders those cheap, plastic ones.  That don't even last.  All my kitchen ceilings where I have ever lived till now.  Fingers crossed are splattered with pasta sauce.  Not strong enough.  Bought glass ten years ago.  Lasted till end of the year.  

    Went into Sainsbury then I saw one that Jamie Oliver used, plus Food Processor it is the time and journey to go back.

    Hope you OK thank you.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @Sam_Scope I forgot about that extra like over counter meds.  I when budgeting meals and the shop.  Have to take into consideration extras like household cloths, bags, zipbags ,wipes, cleaning products.  Easy to use nozzles some are annoying and hard to use.  Fingers and thumbs. Worse for me are the bleach bottles found discount stores a lot cheaper.  Certain named brands over top prices.  Cillit Bang have a range of cleaners expensive have stupid annoying nozzle and I can not do it.  It says push in and turn.  My hands are numb.  Took me ages to do and cost a bomb but I use this for my ceramic hob.  Can not find a suitable cleaner.

     I feel I could be OCD and have had a days just doing tidy up and cleaning.  Obsessed clean especially kitchen.  When you cook fresh food all time just feel to be clean and safe.

    Also when I have had friends cooked for them.  Wipe down and clean before I even start.  How any of them survive there bacteria infested kitchens beats me.

    I know I am looking at spending extra £40 a month on products to keep me clean and safe.  Many of them go through a lot per month.  Scourers is one, that I can hold.  Non Stick change that every week.  Same with kitchen towels and floorcloths.

    Have done volunteering in Kitchens I suppose a lot of that is imprinted in my head.

    Other costs are car maintenance screen wash and wipes for car 

    If anything else let you know.

    Nice to talk to you.
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    @thespiceman just because I post something that shows just how positive I need to be every single day just to do ANYTHING doesn't mean that I am not so depressed because of having to do it with no help at all that I am constantly fighting suicidal thoughts. It really is that every time I wake up I face the same question "Is today the day I give up and just stay in bed forever or do I just try to top myself and get it over and done with or do I get up and have something to eat and drink". It's a miserable thing to do 2 or 3 times every day because I cannot sleep for more than 2 or 3 hours at a time unless I am exhausted. 99 days out of 100 I choose option 3. I never bother telling anyone when the 1 in a 100 day occurs. It was pointless in the past and it's pointless now.

    The reason for the NHS delay is simple. You need to suffer with something for 6 months before they will consider providing assistance. They are not interested in doctors opinions. They insist you wait for 6 months AFTER you need something before they will even think of supplying it. Stupid moronic system but that's how it works unless they are pushed into doing something sooner by someone prepared to take them to court over it.

    I never bother listing all my conditions, not even just the diagnosed ones (currently 12), as it just makes posts boring keep repeating myself. I have what I have and have had most for over a decade with one or two for over 25 years. On most of them I have had to become pretty much of an expert in order to correct doctors when they get things wrong (90% of the time).

    Today was a fairly good day because I got out, had dinner cooked for me, spent time with friends of my own type, succeeded in finishing a jigsaw puzzle and haven't (yet) had to OD on medication to keep pain within levels at which I can just about cope. The pain is pretty much out of control due to having to use the wheelchair today and because the lady I saw last night was extremely energetic. Note to self: Pick a lady a little older next time, lol!

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • CaderMacCaderMac Posts: 105Member Pioneering
    I once read that, on average, raising a disabled child costs 8 times as much as raising a non-disabled child....... eight times!!!!!!!!!!!!!!!!!!
  • foxukfoxuk Posts: 93Member Courageous
    Just a bit of information 

    If you get your incontinence supplies from Bullen Healthcare, they not only deliver but also ring for your needs once a month. They get the prescription authorised by the GP which saves dealing with the dreaded receptionists......

    The big plus is FREE stuff from them as a thank you for doing business. This includes Latex or Vinyl gloves, scented disposal bags, big bags of wet wipes and the best dry wipes we have got anywhere.

    Some of the prescription bits and bobs that we use monthly we wouldn't even know about if they hadn't let us know.

    Many GPs don't publicise Bullen's service as it would cut the profits of local Pharmacies. On one occasion one of the receptionists sent my wife's prescription to the local Boots chemist and they couldn't even supply most of the monthly prescription essentials. Luckily this was a duplicate and we got the bag of goodies delivered as well.

    Our budget doesn't allow subsidising Boot's shareholders.

    Just Googled their website for the url and found they do stoma and woundcare supplies as well - www.bullens.com/

    I have no connection with Bullen's except having dealt with them for over 10 years. First for my dad and now for my wife.

    This sort of information should be in every doctor's surgery.

  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello @foxuk Thank you for the information.  This was the point I was try to explain.  There are services that you can get.  GP and the surgery has a wealth of information.  Also lots of out sourced suppliers whether sanctioned by the surgery or not.    Nice to talk to you.
  • Cheese2323Cheese2323 Posts: 4Member Listener
    What an informative group. I feel I am learning much more than I thought I already knew. The sheer fact that everyone shares their own personal experiences can only be of benefit on the whole. Thank you X
  • foxukfoxuk Posts: 93Member Courageous
    Hi thespiceman I think it's information that charities run away from giving out. 

    It's the problem they have with 'seeming to endorse' the businesses giving good service. Oddly at least one allows their name to be used by a business (for money) and that business is neither the cheapest or the best quality for what it supplies.

    Perhaps Scope could be a leader in this?

    With a known name it would be possible to negotiate preferential deals for Scope members. How about free delivery passes from the supermarkets or even Amazon Prime at a reduced rate.?  It does fit in with benefits for it's beneficial class before anyone mutters Charity Commissioners.

    I'm not suggesting selling the database to get money. I am suggesting allowing access to Scope members through the website or (opted in) emails for suppliers who are prepared to give that bit more.

    BTW you have a very good surgery. My present one is half way there but a few years ago I was registered with one that even locked the disabled loos. This meant having to wait in the queue for 15 minutes or so and having to tell the receptionist why you needed to use the disabled loo in front of a queue of people all listening. Everything else there was similarly disability unfriendly......

    All the best

  • MarkinsuttonMarkinsutton Posts: 82Member Pioneering
    Most of my additional costs go on my social care. My care at home is partly paid by social services but if I want to go out I have to pay for a carer myself to go out with me as I struggle to manage in busy places. I really enjoy going out but can only do this every 2 to 3 months. The only thing I have managed to keep doing is going to a disability sports club as this is a place I feel able to get to myself. I also have a habit of losing stuff or breaking things. Food is another area that seems to cost a lot for me as I struggle to eat swallow. being at home a lot the cost of heating is much more but I am guessing this is the same for most people  
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello @Cheese2323 Pleased to meet you.  In to your reply why this the reason I joined.  Learning and having the correct information.  That I can use to give my life a meaning.

    I get loads of support, love, kindness, warmth from every one.  Thank you all.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @foxuk Thank you for reply.  How are you ?  I agree with you with this.  I know in my past trials and tribulations with volunteering for charities.  It is a shame that I see all the time and have seen people who accessed the charities services not get the full delivery of services.

    One of the difficulties is that there are amazing, fantastic people in the charity sector.  Whose dedication is so rewarding and heartbreaking.  I am lucky to have such support and feel touched that I have emotions even now thinking about them.  Miss them all.

    Then as with any charity sector it pains me to say this and I can feel myself getting annoyed and upset with this.  Those who appear to work for a charity and give themselves an opportunity to do a job what they are paid for.  To them a job is a job.

    I say this because I volunteered for a mental health charity for five years.  I had so much to give and every time the word endorse or sponsor came up.  Well I had enough.  This became annoying and upsetting.  Simple things like the service users wished to have a lunch.  I know vegetable market stallholders willing and kindly to give me vegetables at a reduced price.  Not going off but near to dates.  Some of the produce was perfectly edible.  No response, no one cared.  Told to go to local supermarket.

    I just thought I said at meetings this lad a good friend willing to help us as a charity.  Once I realised what was happening.  Gave them the managers of the charity a list of business people who were willing to sponsor, help those in need of employment and the rest.  Nothing happened.  I do recall that the charity concerned spent a considerable amount on databases and the setting up of one.  By a consultant who overcharged them for every little expense.  Yet I had told them of a former business colleague who could help and assist in their endeavours.  Cost a lot cheaper.  

    I found out that a lad who I had met at the charity another volunteer had also given them a list of suppliers and business to help and support the charity.

    As for SCOPE  I think this would be great if it would happen.  Support and assistance for all of us in the community.  I know others do this.  SAGA for one I believe.  Pray and hope so.

    Thank you about my surgery.  I have been there for seven years plus.  I have had surgeries like yours before.  I never understand why want to lock loos for.  I suppose it is to stop outsiders coming in to use them.  I have seen that before now.  Gentlemen of the road.  Much disapproval from the snooty receptionist.

    Take care.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    edited January 2018
    Hello @Markinsutton Pleased to meet you that's one I forgot to include.  Thanks mate.  The costs of heating my home.   The magic touch I have with plates, cups, glasses and the breakages.  Went to a supermarket and came home with a dinner service in a plastic bag.  Dropped the lot.  All smashed and the rest.

    This being so annoying and I have to think all the time.  If I go out buying for the household bring strong bags.  Always losing them.  Them cost a bit.  Most supermarkets do sell them.  It is because I am near some one in a parking bay who is disabled.  Complaining about all her or his groceries spilling every where.  I am the gent who gives them a strong bag, advises them to have a plastic box in the car.  Prevents spillages etc.  Can lift then tins and bottles and the rest out of the car.  Just an idea.  OK replacing that the other week.  Adjust weight to your purposes.  Can not lift too heavy but it helps.

    By way have known some people buy those folding trolleys and then pile stuff on to it.  Into the house.  They were disabled.  Had problems lifting and carrying.  Good solution.

    Lost a load of tins and bottles, plus veg and fruit in the past trips with bags ripping open into the drains and gutters.  When I have arrived home.  Victor again I do not believe it.

    Car parking unnecessary charges went to appointment hospitals worse for under 30 minutes £2.50.  That's my breakfast budget half gone.

    Nice to talk to you take care.
  • foxukfoxuk Posts: 93Member Courageous
    I just have to add that everything sold by most specialist 'Disability suppliers' can be bought cheaper if it exists without the 'Disability' tag.

    Some suppliers are fair but others just gouge as much as they can from people that cannot afford the extra cost.

    One of the examples that still annoys me is the attendant chair that I had to buy for my father to get him to a consultant appointment at hospital a good few years ago. It was needed within a couple of days and I had to pay over £200 for one with a local supplier. The exact same item was available the following week (on eBay) for £44 delivered. Even if I had seen it the delivery date was after the appointment date.

    With the aid of a friend I made my wife a comfy chair with arms that come off entirely, but still are strong enough to be used by her to shift position. This means that she can slide directly from her bed to her chair and from the other side to her porta potti. The porta potti is in a purpose built enclosure that makes it the exact right height and has a large comfy seat. Previously she used a combined toilet seat and slide board. Putting a big end on a slide board with a hole in it isn't brain surgery......

    That is another thing. Why doesn't anyone in the 'Care' advice mob tell people that not only are porta pottis more convenient and less smelly than commodes but they are a darn sight cheaper as well. UNLESS you buy from a 'disability' supplier; I saw the exact same one we bought being sold as a 'disbility' aid at four times the price we had paid from a camping and caravan supplier recently.

    My wife wants me to add that the porta pottis come in many different sizes, short and tall. They also have different size tanks. There are ones with flushes and without, and even ones with push button electric flushes. Ours is now an off brand cheapie (£49.99) from eBay which was the right height and had a smaller tank - I was getting too old to lift the full size (branded) model.

    At a guesstimate the total cost for the chair and potti enclosure would have been less than £100 but the timber was upcycled which saved a bit. The 'bariatric' cushion was home created by using two different grades of foam bonded together. (my recently bought wheelchair had a new cushion on it, the price tag was just under £50. It most definitely doesn't give the same grade of support and wouldn't have been suitable for my wife- how much we would have been charged for a ready made cushion is scary).

    That's my grumble over


  • NystagmiteNystagmite Posts: 609Member Pioneering
    I agree, Jon. That's why I buy (there are other places out there) most things from places like Amazon. Much cheaper than to disability specialist places.

    Ok, you do pay VAT; but it's still much cheaper.
  • foxukfoxuk Posts: 93Member Courageous
    Hi Nystagmite. I had forgotten the VAT. The brand name portapotti cost about £90 to £100 including VAT 4 years ago. The exact same branded item was about £400 without VAT from a disability supplier. That makes it about five times the price.

    We got the cheaper one, as it fitted the enclosure.
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    A number of the posts here refer to prices being higher from "proper" disability suppliers.

    There is a very large number of people who seem to think that every disabled person gets money thrown at them and has to pay for very little. Where and when this began I have no idea but, despite all conversations and posts I ever have/make, continues to grow. It has become an urban myth now it seems. Until this idea is kicked out into the trash I believe this sort of price gouging will continue

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello every one reading comments about the disability price tag and more for being disabled.  I have a struggle and a argument with most car dealers.

    Seems if wish to have an automatic car prices are always higher.  I agree that there may be limited numbers made.  Every time looking at automatics costs and limited choice.  I know speaking to people I have met in the car dealerships.

    I now get a car on the Motobility Scheme, well I can get a automatic, problem is I can have this model but have to pay advance payment.  Last time was OK but told by dealer rules may change.

    Last time got what I always have but when contract comes up only issue was that the car I requested not made for a year.  So had a extension.  Do know could be hard to find anything if contract is cancelled due to PIP.

    I have met people on this forum and others whose unexpected costs are extremely high.  When trying to get a car.  Adaptions and the rest.  Especially those whose use wheelchairs and need a hoist, room for their wheelchairs, seating and other sorts of adaptions.

    Looking in the Motobilty magazine for specialists who deal and do this sort of adaptions.  Seems not many in my area.  I know last car I got from the scheme.  It came via Newcastle dealership and came down to the one in Durham.  

    One thing I was not aware of was the notification from my dealer that prices may change and I could end up paying an advance payment.  If though the manual listing of cars on the scheme says no advance payment for the car I choose.

    Unexpected surprise.  That is why I am concerned for my own self and others on the community who drive and find themselves with a problem.  If I lose PIP and trying to find another dealer with sensible priced automatics.  As I have said spent thousands and thousands on automatics.  Before I joined the scheme.

    Plus I recall addition costs for insurance because I was disabled and drive an automatic.  That cost more than if I was able bodied not disabled.

    Best wishes and take care nice talking to you all.

  • GrannyMoGrannyMo Posts: 1Member Listener
    I have found the past 3/4yrs that I just can't use buses at all anymore the way they brake constantly hurts me so much especially the base of my spine not to mention the hard seats. I now need to pay for taxis where ever I go. My energy bills have gone up so much too as I need the house warm ir my bones seize up
  • feirfeir Posts: 356Member Pioneering
    edited January 2018
    so far i have paid for crutches, compress bandages (different types for different pains and areas of my body), taxis to appointments or random emergency hospital visits, phone calls to 111, pain killers and heat/cooling gels, hot water to sit under in the shower when the pain is really bad (i'm on a water meter also but this has been capped using watersure), incontinence products, extra cleaning products and extra washing, £500 bailiffs bill because i was in too much pain to pay my council tax or even open their letters to know to pay for it (i thought you could pay it any time during the year but apparently not). i'm still housebound and have a poor quality of life despite this. wouldn't mind having some adaptations to my house or ideally moving to something more suitable for my needs but gonna wait and see if i get better before attempting this. right now i would like to pay for someone to take me out, a wheelchair to be taken out in, and to help around my house, and to help sort out my finances/mail as i just can't think any more and suffering from depression now so feel like it's too much to cope with anyway.

    my kids are doing all of the housework and shopping (which they need to learn anyway) but none of my personal care as i don't want that sort of burden on them.

    even before i ended up this bad i was buying special aides so that i could continue functioning, and they did help as my disability was mild then. i get my stuff from china or medical sites so they are cheap luckily and i don't pay VAT.

    biggest price i feel like i'm paying is for the loss of my dignity as i'm left to struggle and being invalidated when i ask for help.

  • TopkittenTopkitten Posts: 1,031Member Pioneering
    @feir get your GP to arrange an Occupational Therapy assessment. They can provide some simple stuff to help. There are also companies that will rent wheelchairs for a small fee for you to try out to see if it helps

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello @feir   How are you ?  Sorry what is happening at present.  Please can I ask if it is possible do you need some support and help from a welfare sort of perspective.

    I know it is difficult to ask for some one to assist you in day to day activities.  I believe you could get an Occupational Therapy assessment as Top Kitten says.  You are under a lot of stress I can feel it and some one to help with simple things like your post, unpaid bills plus other things like you have requested for.

    I understand being housebound and expected some one to take control and run your life for you.  That will not happen.  There are charities out there who have available a range of services and advice.  Plus your local council as well.  Also the worry that a stranger become a life line coming into your house.  Not used to that.  I am fully aware of your concerns so would I.  Trust is the most important thing is it not.

    When I see you struggle feel loss of dignity no one wants to see you in pain and be emotional.  I know I have been there so many times.  Still am most days.  As does this community.  Everybody cares.

    The choice is yours what you wish for.  Please try to look at options.  Either on the web or probably from SCOPE.  Speak to your GP.  The support I give is I am here to listen as are this community with useful information and messages of hope.

    Please can I say it is hard and difficult asking for support.  You have family but they have there own lives and I can understand that.  Also they are there to assist with minor tasks, shopping and moral support.

    I never involved my family in my endeavours to go with my own support and care.  Do not wished them to know any way but that is me not you.  I live on my own, proud old fashioned gentleman in early fifties asking for help, advice, assistance so hard and mumble get stressed all the time.  Get anxiety sweats just asking for simple things..  Looking to future maybe will need some support.  Getting great support, help, advice here.

    I have to do this asking for what I need because in the end no body is going to ring you up how can I help?  So I have to grit my teeth and make a script out what exactly do I need now.  Find some one and tell them.  Using the script, I get nervous on Phone.

    I know I can do this I have to.  I hope and pray you can do the same.  Best wishes Take care nice to talk to you.

  • foxukfoxuk Posts: 93Member Courageous
    Hi feir - just one little bit of information. Pain relief, bandages etc should be on prescription. If in Wales that means free. If in England get a pre paid thingie which cuts the cost.

    I know that many receptionists make us feel like scroungers BUT we and our families paid for the NHS. The doctor's attitudes to pain relief have changed since the damming NICE report and they are far more positive. Gone, thank God, are the monthly fights to just keep what we have let alone get what we need to function. That's at our surgery anyway.

    Things like Gaviscon on script can save a fortune - My wife's drugs cause GI problems and we were buying Gaviscon at over £10 a month now free. The twerp who delivers did make a comment about 'milking the system' but he'd have been the same if it was life saving medicine anyway (I went to school with the little **** and he hasn't changed).

    Get a benefits check by a reputable charity and if it doesn't sound right get another one - the quality of information varies depending on the area you live from good to plain damn wrong.

    I was a child carer and it gave me a sense of independence that has served me well in later life. The responsibilities develop one's ability to balance things in a more mature way. My dad and I had an informal code - when we were 'workmates' we called each other Fred - when he was parent he called me Jon (or Jonathan if in deep doodoo) and he became dad. Things like that develop naturally and it is quite normal. 

    Good luck and I hope that helps.

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  • feirfeir Posts: 356Member Pioneering
    thanks @topkitten i didn't know the GP could arrange stuff like that, been trying to get an appointment with them for about a month and finally got 2 for next week so hopefully i remember to ask for an assessment at one of those.

    @thespiceman i'm not too bad asking my family to help, there are 3 kids living here, all teens, and it's mostly their mess anyway or their stuff that needs sorting. i'm hoping to get PIP and then pay someone to sort the other out the things i don't feel able to do myself at the minute, i know i will eventually find ways to cope better but right now my brain just seems to have stopped working. thanks for the support.

    and @foxuk i didn't know everything i could get from my GP but i did know about the medication i could (and can only get the ones that actually work on prescription), it was mostly being unable to get down to the doctor that meant i bought them myself and they were cheaper than even getting a taxi to the dr and back (except the crutches). nobody is rude to me round here luckily, the drs receptionist is nice, and the chemist are too, bit of a problem that we have locums only so you usually see a different dr every time you go but sometimes if one person misses something the next dr won't. :)

    thanks all. i didn't even expect help off that reply but you were all great.
  • NystagmiteNystagmite Posts: 609Member Pioneering
    Ella1976 said:
    Any good kind Dr will not make you pay seperately for 102 perscriptions a week..But it annoys me my Parents are to OLD to claim carers ?Do i get my 8 year old to claim
    Your 8 year old can't claim. You have to be over 16.
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  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello @Victoriad   Thank you for information on automatics.  I will have to look at what is available if I lose the high rate of motobility through assessment of PIP.

    Hope you OK Speak to you soon.

    Hello @feir  Thank you for reply.  Sending a message I hope you do get PIP.  Only concern why do you need to pay some one to do tasks out of PIP.?  I thought the money if you do get on other essentials that can help you improve your life  I do know there are charities out there who would be willing to assist.  I know that myself.  Also it is your choice what you wished to do that is all.

    I understand that you are not good mentally.  I hope you be OK.
  • monkamonka Posts: 10Member Listener
    For us the extra cost of heating is very financially draining,  my son has a neuromuscular condition and cannot move independently, he is an electric wheelchair user.  During the winter we have to have the heating on most of the day as without it he cannot use his hand or his fingers on that hand because they become cold.   My son user his hand to click on the mouse enabling him to use on on screen keyboard.  Without this he would be totally isolated.  Despite having the heating on all day my son wears his lightweight padded cost at all times indoors.  Our heating cots around £100 per month which is hard for a pensioner and a person on disability benefits to keep up with.  Chewing and swallowing is also an issue as I have to buy and cook expensive food like fish as meat is too difficult to eat,  we have to go everywhere in our adapted car and the cost of fuel is also very prohibitive.  I have recently found the cleaning and gardening have become too much for me because of age and caring duties and I am now seeking to find support in these areas by paying someone else to do them. 
  • anaqianaqi Posts: 54Member Courageous
    My husband works full time so I have to pay for everything.

    It costs nearly £10 a week for my pre-payment certificate and all my supplements (recommended by my consultant but not available on the NHS).

    My dental bills are huge as I wasn't diagnosed with Sjogren's until it had caused a lot of damage to my teeth.

    I have to pay for annual sight tests to make sure my medication isn't damaging my eyes.  My prescription often changes so that means two more pairs of glasses every year.

    I had to pay £800 for my own second hand powerchair as I can't propel my NHS manual chair and they won't assess me for a powerchair as I can walk on crutches inside my home.

    I have to pay hundreds of pounds in train fares to see my consultants in London as I have several rare conditions which my local hospitals are not experienced in treating.  I don't qualify for hospital transport and it would be too tiring for me to travel 150 miles each way in the back of an ambulance.

    I require supportive footwear which is more expensive than normal shoes.

    I have been assessed as needing a stair lift but I don't have one because I was denied a DFG and we can't afford to buy one.

    The list of additional costs is endless!
  • mikehughescqmikehughescq Posts: 3,563Member - under moderation Disability Gamechanger
    Hot tip. Get yourself involved in research with your consultants. You'll get invited down and often have expenses paid. If they're smart they then book you into clinic at the same time. Works for me :)
  • feirfeir Posts: 356Member Pioneering
    @thespiceman thanks. i mean the tasks that i'm not able to do and my kids aren't able to either, there is a little bit of stuff needed there and it's getting urgent now. also i was hoping to pay someone to see about what's wrong with me but since i ended up in hospital i have been seen pretty fast by specialists and so i am not panicking too much about that now and feeling confident they know what they're doing.my GP is a pretty poor service unfortunately and i was relying on them previously..
  • TopkittenTopkitten Posts: 1,031Member Pioneering
    @feir unfortunately it is very easy to overreach what the GP's can handle.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • amissamiss Posts: 2Member Listener
    So, I've just won my battler with the DWP & PIP & what a degrading & appalling process it is! My assessment was a complete farce & had nothing to do with being disabled, in fact I might have well not been their for all the good it was. It was made as difficult as possible to get to the assessment centre in some hovel of a town which was virtual impossible to get to by public transport even though I had asked for a town nearer me which was an option offered when filling out the form. Also, when when the CAB helped fill out the form they didn't hold out much hope that I would be successful, friends who has been through it said the & a friend who worked for the DWP also said I would fail........& guess what I did. I rand tithe DWP asked to to appeal 'you can't appeal you have to go for a mandatory reconsideration' here again made as difficult as possible for the claimant, to me its appeal but never mind. I asked for my report, well I have never in all my life read such an appalling report of utter rubbish just full of cut and paste statements. For example. Due to my accident I suffered spinal cord damage & has left me with a number of complex health issues one of which is incontence. So the box agreed that I had this problem the next box said I didn't but this is the real kicker 'I attend main stream school'? I attended school over thirty years so for the life of what has that got anything to do with being disabled? My whole report was just full of this rubbish & that's what I was failed on.
    Now interestingly having appealed on, all the areas that I should have been awarded PIP on all of a sudden yes your right you win.
    Two final points on this. Firstly, I was assessed by Independant Assessment Services but my report was on Atos Healthcare headed paper, correct me if I'm wrong but didn't Atos loss the contract when I raised this issue with assessor she felt it was very strange more like some corupution going on here. Then the assessor said she was quitting that day because she no longer work in a system that discriminated against disabled people.
    Secondly, I was speaking to someone who was an assessor who told me that he quit after eight weeks as he was fed up with his reports being changed so that claimants failed. This whole PIP process stinks & is purely a cost cutting exercise & to punish the disabled for being disabled.

    Orginally I was awarded DLA for life, this helped play for certain items for my incontence, dentist, medical equipment & help with the running of my wife's car for running me around. However, the lower PIP award has now made life very difficult as it come nowhere with the DLA that I used to get. I had to retire on compulsory medical grounds at fityfive & live on a small pension DLA also helped to top up my pension to also pay bills as my pension nowhere covered them. We now find ourselves in a financial position that is very difficult. Where as my pension & DLA covered all our outgoings my wife now has to top up to the point now on a five week month we have no money at all.
    I wrote a three page letter to my MP (Tory one) & told him exactly how his parties policy towards the disabled is hurting us & I pulled no punches. He thanked me for this & said it gave him a better understanding of the impact but as I told him when I saw him that he's not going to do anything about it as being a new MP he wants to climb the greasy pole & wants his overseas junkets which already one overseas visit.
    Saddly, many of us disabled will have to grin & bear it & realise that we are currently stuck with this policy & the tories are not going to change their policy. 
  • MerlinaOctopusMerlinaOctopus Posts: 1Member Listener

    There are lots of things.

    Having to pay for fixed term pre-paid rent contracts or guarantor fees as landlords don't trust benefits.

    Needing to pay more than £1500 for an adapted tricycle (which is serious transport not a recreational item), and then having to pay £10 a month to insure it as it is over normal household insurance cost.  Plus having to have a shed to keep it in as it is far to big to be stored inside.

    Having to pay twice the amount of rent that most people my age would pay because I need self-contained accommodation.  The accommodation I am living in is still unsuitable (difficult stairs) and this is one of the main things that hinders my working: truly suitable accommodation would probably be three times the normal cost.  (Benefits do not help me with this as despite the fact that I'm visually impaired and have a severe anxiety disorder, I'm still expected to be able to share a house with strangers).

    Needing to pay for adaptive equipment such as good quality ANC headphones (I paid VAT on those!) and long canes and similar.  I find it difficult to claim things even when they should be provided or when VAT should not be charged because the admin tends to be so complicated.  The ANC headphones are the single most essential item I have, and have sometimes been the only thing that's kept me out of hospital with an anxiety disorder.  They cost several hundred pounds but have lasted two years so far.  Also a continuous supply of earplugs and a white noise machine (though I'm fine with a basic one, thankfully). 

    Backboards and an ergonomic chair with full neck rest (thankfully I had one provided at university and it has lasted).  Backboards are not that expensive given how well they last, but the ergonomic chair cost most of £1000.

    Having to pay for train tickets only with a railcard, because I find it difficult to book the journeys and get the discounts.  Friends of mine are often able to travel much more cheaply than me, though this is lessening now we're out of the age bracket for the young persons railcard and I still have the disabled person's railcard.

    Needing to pay for private healthcare due to the failure of the NHS to provide adequate mental health services.  In actual fact this is mostly impossible, meaning that I have had a condition that is usually treatable for ten years, without being able to access adequate help.  My parents paid for the assessments that made diagnosis of dyspraxia and VI possible (it is neurological and can't be picked up on ordinary eye-tests).

    Needing to pay for taxis to reach medical appointments a lot of the time.  In practice I can't afford this either and struggle to get ordinary care as a result.  Because I am not completely housebound receptionists and medical staff who don't know me are very judgemental about coming to me.  (Though I should acknowledge the incredible understanding of a recent medical person who came repeatedly to the surgery I can reach at a time that suited me despite the fact she doesn't usually work there).

    Paying more for food because I cannot cook very much, and because I am disorganised as a result of my neurological problems and tend to have trouble using things up.

    Paying to replace things that get lost or broken due to my disability.

    Being unable to claim expenses due to inability to do admin - this was a problem in education where I had to claim things like a taxi allowance or for food receipts, though not so much now.  (Mostly my mother did the taxi allowance, so it wasn't as bad as it could have been in practice; only the odd lost receipt.  If she hadn't I wouldn't have been able to go to lectures most of the time).  The same goes for benefits (I'd be on the streets without family help with benefits' claims) and is likely to go in future for losing tax allowances I'm entitled to because they are too administratively difficult to claim.

    I should add that there are a few things that are cheaper.  Because I am visibly disabled, museums and zoos and theatres  generally let me in as a concession, or let someone in with me free as a carer, and I have a railcard and a bus pass because I can't drive.  There are probably a few other similar things.  However, once you've added in things like extra rent, I don't think it comes close to offsetting the overall extra costs.  I'd guess life is (very approximately) somewhat less than £100 per month cheaper, and a good few hundred pounds more expensive.

  • mikehughescqmikehughescq Posts: 3,563Member - under moderation Disability Gamechanger

    @amiss ATOS lost a different contract. They have rebadged their PIP work as IAS partly because they presume people will make less of an association and partly because the last independent report into PIP suggested that the process needed to appear more integrated. At present you apply to DWP; get to go to an IAS assessment and then await a decision from DWP. Eventually it will be badged to look as though the whole process is managed by DWP even though private providers remain in the mix.

    So, no corruption. Just a little confusion.

    However, your general point, about a reduction in PIP compared to DLA, is absolutely relevant to any discussion on the additional costs of impairment, not least because neither DLA nor PIP came/come anywhere covering the extra costs of disability for many many people. There was some research done with DLA which showed that most people's did not get used for the extra costs associated with impairment because it was largely being used to make up for the fact most people had insufficient income to begin with.

    I'd be confident a repeat with PIP would produce a similar if not worse picture given benefit freezes; the benefit cap; bedroom tax and the removal of any equivalent to DLA care at the lowest rate.

  • LyntyLynty Posts: 2Member Listener
    Hello people...I am annoyed that the disability blue badge has increased to £10 in the last few years but now the parking permit for car parks within Torbay Devon has gone up to £40 per year plus £20 for any alteration in that year i.e. new number plate... these prices are not in line with inflation and are too expensive for someone like me who is just on a state pension.
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello New one pay for garden collection of waste.  £30 for  a year, plus that's increasing again.     I can see that being so much that people just wont bother and start to damage the environment.  No one wants fly tipping but it will happen.

    Councils anyway mine put bins out struggle even though I was denied assistance.  Never turn up on time.  Small hidden charges for refuse disposal becoming the norm.  Last big clear out per item £10 cost me £50 for a settee.  Cost per cushions and seats.

    Found out my gardener has a brother who has a trailer for the tip.  Licensed so I asked him.  He did it for me removed unwanted rubbish, household, electrics etc.
    I was worried I thought he might just dump it but my gardener told me he and him went to tip and I know they did. 

    I wonder though how many people in community have mounds of unwanted stuff that needs to be removed and it will cost a bomb.

    Paid for his fuel.  Rather pay him than council.

    Out door storage is full again.
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  • NystagmiteNystagmite Posts: 609Member Pioneering
    Victoriad said:

    If I were you I would try and apply for PIP and this benefit award qualifies you for a 25% discount in Council tax.

    No it doesn't. You get a 25% discount if you live alone. You can also get discounts if your house has been adapted, you live with a full time student or the adult you live is classed as severely mentally impaired.
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  • mikehughescqmikehughescq Posts: 3,563Member - under moderation Disability Gamechanger
    Let’s be a little more precise. You have to get standard rate daily living component of PIP and a medical professional has to certify you as SMI. Mental ill health in itself is not enough to guarantee that will happen as the definition is very specific around arrested or incomplete development. Many medical professionals will not certify and a surprising number get challenged by local authorities. There is nothing automatic about it at all.

    The amount of the discount is not necessarily always 25% either. It depends on who else is in the household.
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  • tarjia477tarjia477 Posts: 1Member Listener
    I have been disabled since 1991 and have suffered incontinence that l have struggled to fund the costs of pads / sheets/ wipes/ nappy sacks for. The incontinence have got considerably worse now l am in my sixties. It literally is a choice between do l eat or manage on cheaper and not very good pads. My doctors have always been appalling , preferring to just ignore me. I have fought the last few weeks to find out where the nearest incontinence clinic is and it fell to someone else to tell me and the next clinic was a month away. Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
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  • foxukfoxuk Posts: 93Member Courageous
    tarjia477 said:
    Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
    Our previous doctor was very 'frugal' with anything that spent his budget...

    You could try Bullen Healthcare ( http://www.bullens.com/ ) who should be able to give advice.

    When you then contact your doctor ALL the work has been done and all they will have to do is authorise the prescription.

    I would also demand an appointment with a consultant. 

    My wife is catheterised (and so was my father) the absolute worst treatment we have had was when my wife was released from hospital. A nurse was sent out to try and convince us that she could manage without a catheter..... She had been catheterised in hospital as they couldn't manage her condition without cauterisation. That's with a full ward of able bodied nurses and a hoist. I was supposed to manage with a slide board and am Disabled myself (I get enhanced rates of PIP for both Care and Mobility). Some NHS workers are plain evil and see only their money saving spread sheets.

    If you still don't succeed change your doctor, it worked for us!

    Good luck.

  • feirfeir Posts: 356Member Pioneering
    tarjia477 said:
    I have been disabled since 1991 and have suffered incontinence that l have struggled to fund the costs of pads / sheets/ wipes/ nappy sacks for. The incontinence have got considerably worse now l am in my sixties. It literally is a choice between do l eat or manage on cheaper and not very good pads. My doctors have always been appalling , preferring to just ignore me. I have fought the last few weeks to find out where the nearest incontinence clinic is and it fell to someone else to tell me and the next clinic was a month away. Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
    i've been really lucky since i got admitted to hospital, the first specialist i saw had an idea what was actually wrong with me so referred me to someone else more appropriate to treat me and this consultant has found out what's partially wrong with me. he also referred me to an incontinence consultant and told my GP to refer me to the rheumatologist (which they were supposed to have done in Oct of last year). this all happened within the space of two months and trips to my GP (going on for much longer) only helped with painkillers and not much else.

    i like the advice above, hope you get sorted. there was a discussion in parliament about pip this week and i did mention that incontinence products are an extra expense and thought we should get help paying for those because as it is you do not qualify for any help with incontinence costs if you can change yourself. i get that you might need help to pay for someone to come and change you but like you say the products do not come cheap either.
  • BoychrisBoychris Posts: 19Member Connected
    Boychris Posts: 16 Whisperer
    February 3 edited 11:45AM in Talk about finances
    Being once able-bodied then suddenly struck down with a disability through Sickness, accident or through whatever means, Will and in my case caused untold stress, anxiety in many cases it will cause depression.
    But I have asked this following question and have never managed to get a full straightforward honest reply to, and that is  Why does the cost of everything in which, the disabled person has to use or need to adapt to enable us all to live our lives without further injury and in comfort to maintain a level of independence and which is acceptable to the user and others around us.
    Also one has to ask the question why do some companies who offer products or service to the disabled find it acceptable to vastly inflate prices purely because the need/ requirement is there for the service or product users. A Typical example, a Disabled person requiring the use of a mobility scooter/wheelchair whilst on holiday I have found that companies are demanding on average £65/85 per week or more with a £200 deposit.Add this to the cost of a holiday and the cost of the overinflated travel insurance we have to buy this could double or even triple the holiday cost.
    In reality looking at this subject broad spectrum, I have found that I as a disabled person, it does not matter what the requirements the cost a have always found to be higher, than the cost that an able-bodied person would pay for a similar product or service without the disabled implication attached. for example, a 2-week holiday insurance  to Europe :
    Able Bodied cost (age say 60) Cost ON Average £30-40 for a holiday cover.
    A disabled person, wheelchair user, with history of say heart attack or stroke(age 60)
    Cost of travel insurance for a 2 week holiday ranges from £155 to a staggering £389. Fact. even if you tell the company you have had no further health episodes for the previous 5 years, that will be our cost still. one questions as to why because it does not include the wheelchair that an extra cost. 
    Time after time I have found the cost for goods and services inflated because of disability and believe that it is the time that Local or even national Government should take a stand and regulate prices and fees for goods and services for the disabled. V a t relief is available to the disabled providing you meet certain criteria, or have certain health conditions, but the cost for services i.e alterations to your living Accommodation, or paying your council care bill is not Why??
    Has anybody else found or thought about this subject,  my mind I do believe we the disabled are getting ripped off, or mislead,  do you agree that this needs more regulation.

    Read more at https://community.scope.org.uk/discussion/40031/cost-of-disabled-equipment-and-improvments#YlxQ9uFvjm5gmFq8.99
  • BoychrisBoychris Posts: 19Member Connected
    edited February 2018
    I wrote a piece just the other day 
    Cost of disabled Equipment and improvments
    and was lead here by Pippa, well well it does shock me somewhat , as many seem to think the same as me, We get branded with the word DISABLED, and we sit back and watch cost spiral, if something needs to be done which we cannot do ourselves or we need adaptations want a holiday indeed most things to make our lives a little easier than we are going to pay for it, and it is those companies who are raking in profits at the expense of our disabilities. is it fair or not, do you believe that both Local and National Governments should have a department set up to ensure equality should be for all.
  • TheKLF99TheKLF99 Posts: 17Member Connected
    edited February 2018
    I've found a lot of entertainment venues offer discounts for disabled people.  Some of these don't always advertise a disabled rate so it's always worth to ask on the door - the only exception to this is usually the cinemas as for the cinema you usually need to buy a CEA card to get buy one get one free on movies (or it's a Wednesday and you have the Compare The Meerkat offer) - I like films but I've actually never seen the point in a CEA card as normally when I go and see a film I go and see it on my own and so it would be just a waste to buy but it depends on how you want to see films - I also volunteer at the Regal in Tenbury as a projectionist so get to see a number of films anyway - although yesterday I did actually pay to go and see Lego Ninjago at the Regal even though I already bought the Blu-ray 3D the other week - it was worth it and as the regal is only a small local cinema rather than a multiplex it's prices are very cheap and it was good to see on a big screen and support the local cinema too.  

    Some places offer a buy one get one free ticket to the venue - the idea is that you and a carer go free, although even though the carer gets in free you don't suddenly get handcuffed to the carer to go round the venue.  Quite often both you and your carer are free to look at the venue on your own - which with some people with autism they find it more relaxing to be on their own but still have a friend nearby for help if they need it.  Also the person you chose as a carer usually doesn't have to be a carer in a professional manner, most places will allow a friend to be classed as your carer for entry (or in some cases when we go to an event as part of Shropshire Autonomy we sometimes buddy up with other people in the autistic group for entry.)

    Also if your going to somewhere as a large group - ask if they do group discounts and find out what the rate is and what the minimum amount of people you need.

    If you live in or near Telford apply for a TLC card (they're free) - this is a card that allows discounts at certain venues throughout Telford - you can also apply for a disabled concession on the card which gives bigger discounts in some situations you have to live in Telford to get the concession, but if you fit into section 2 of their requirements then you can actually apply for the discounts even if you live outside of Telford and Wrekin, one example of the discount is if you go ice skating you only pay skate hire fees, and lessons are a lot cheaper.

    Some theatres allow you to watch shows at concessionary prices, some advertise them as OAP rates, or concession, or student and they still apply them to disabled as well - it's always worth asking at the box office first before booking a ticket.  Sometimes though these venues don't offer the concession prices online and so you'll need to either phone them or go into the box office to offer the lower rate and even if the online service offers a lower price quite often they'll match it.

    If you're going out for a meal some pubs offer two for one deals (quite a few Marstons offer this) - this is good if you've got an even number of people going with you, but sometimes if you're just on your own or have an odd number of people then it can sometimes mean that one person has to pay full price, which may not be as good a deal, in these cases you might be better to find pubs like Greene Kings Hungry Horses instead which tend to do offers more on courses rather than meals so you sometimes get 2 courses for £8 instead of 2 meals for the price of 1 which if the meals are £10 each if you have two people there then you'd be getting a meal at £5 each, but if there is just one then if you went to the other pub you'd get 2 courses for £8 as opposed to one meal at £10.  Also some places offer all you can eat menus, and some offer all you can drink soft drinks (like Nando's).  Bear in mind though that these places might seem really good value sometimes, but think before you buy - if you buy a bottomless coke from Nando's are you likely to drink through £2.50's worth of coke in a meal - when Asda is selling 2L bottles of the stuff at £1 - you'd have to drink 5L of coke before your in profit - ok it's a bit different sitting in Asda buying a coke than having one with your meal but in all reality coke syrup is cheap which is why some restaurants now offer an "all you can drink policy" because they know your not going to drink more than it's costing them, and even if you do someone else might not. 

    Also if your out and about in the evening and want a quick meal, usually if it's before seven most supermarkets have their restaurants still open, and usually after 5pm they have deals on their meals as they want to get rid of the food they've cooked before they shut.  They can quite often be a lot cheaper than even going to somewhere like McDonalds (and the food can quite often be a lot better!)
  • TheKLF99TheKLF99 Posts: 17Member Connected
    Also one other thing is try local people to do stuff for you - if you need an adaption to your home due to your disability it's very easy to just run off to some massive company and trust their quote is ok, but recently we had a shower installed in our house - we went to a major firm and asked them for a quote - their advert stated they would give a quote.  The guy came out all we wanted was the taps on the bath switching for a shower mixer as we considered that was the cheapest option as we're on economy 7 the water heats up at night so it was easier to use the water that's already heated rather than get an electric shower and heat it up again!  When the guy from the professional firm come out he looked and he started saying we need this pump here, that pump there, extra pipes running throughout the house, he said it could take a couple of weeks to do in total and you'd be looking at about £5,000 to have a shower installed - we told him to take a hike.  We called a local guy in, he said to us give us a tenner and about 30 minutes and those taps will be on - we actually give him £20 'cos we thought a tenner was a bit too cheap.  Thirty minutes later, taps were on and the shower head was even attached to the wall.  Ok it is a bit troublesome to get the temperature right without the pump, but it works and it cost us a lot less than £5,000 (and the taps themselves only cost £20 in the sale at Homebase - so £40 for a shower fitted).

    And one finally thing is - save money on cars - if you're on the motability scheme and you take one of their cars - just total up how much money your spending.  Yeah ok you get a nice new car for three years that is repaired, services, mot'd insured, etc but they take the entire motability rate off you - which when my mum used to have a motability car was about £220 a month.  Now just calculate that up - in 1 year that means you are paying them over £2,600 for a car.  We bought a 55 plate Vauxhall Zafira four years ago for £1,200 - which left £1,400 available in the first year for repairs, insurance, mot, etc and then £2,600 we also take it to a local garage who doesn't rip us off like the big main dealers (we use Gatechange in Tenbury), also as we pay the road tax on it rather than register it disabled we are able to use it fully as a family car too and aside from the insurance and wear and tear not really worry about the mileage we're doing either.  We've had our car for four years now and have done over 60,000 miles in it - not bad considering when we got it, it had 1,000,000 miles on the clock!  Sure we've had to pay for it to be repaired a few times but at present we've calculated that within those four years we've probably paid about £4,200 in repairs, tax, insurance, breakdown cover and buying the vehicle, etc (and some of that was because we initially took it to a dodgy garage for a repair which they broke more than they fixed on it - and also we drove it into a flood - oops!) but if we'd have gone with motability we'd have paid them about £10,400 we've actually saved over £6,000 by not using motability!
  • TheKLF99TheKLF99 Posts: 17Member Connected
    oh and nearly forgot - one other thing - if you have certain disabilities that need you to use a lot more water than normal and you're on a water meter - look up the WaterSure scheme as it caps your water price.
  • TheKLF99TheKLF99 Posts: 17Member Connected
    tarjia477 said:
    I have been disabled since 1991 and have suffered incontinence that l have struggled to fund the costs of pads / sheets/ wipes/ nappy sacks for. The incontinence have got considerably worse now l am in my sixties. It literally is a choice between do l eat or manage on cheaper and not very good pads. My doctors have always been appalling , preferring to just ignore me. I have fought the last few weeks to find out where the nearest incontinence clinic is and it fell to someone else to tell me and the next clinic was a month away. Do other people find that their doctors surgery just do not listen and seem devoid of common sense?
    I am incontinent too - I've had incontinence since birth due to a weak bladder.  Initially I did used to buy my own pads until a friend told me to get an appointment with the incontinence nurse.

    I initially went to see the nurse and they put me on a prescription for pads, although the pads they prescribed were very different to the ones I'd been using, I'd been using a mixture of DryNites (even though they have an age range of 15 they actually do fit quite wide - I'm 33" waist and they easily fit me) and adult taped nappies depending on what I could afford at the time.

    Initially they give me some of these Tena pad things that go into stretchy underwear and they were like useless, they'd constantly slip out the underwear or leak, they then changed them to the pant type which initially I thought would be much better as I'd been using DryNites still at night with the pads in the day.  The pull up underwear for adults though is nowhere near as good as DryNites, the sides are too weak compared to DryNites (I don't know why though as DryNites and Tena are both made by Kimberley Clark - surely if they can get it right for bedwetting pants they can get it right for adult incontinence pants!)

    Eventually they switched me on to the taped nappies which work a lot better.  They work better because things like the pants are designed for one hip size, and unless you've got that perfect hip size they are too lose.  The pads on their own don't cover all around so sometimes when sitting or lying it can leak easily.  Where as taped nappies cover all around, the only time they seem to leak is at night, and so what I do at night is I usually use a DryNites and cover it up with the last adult nappy I've worn with an extra pad on the bed (and plastic pants over the top), most of the time the DryNites doesn't leak but if it does the adult nappy is there to catch any leakage, and then the bed pad as a final resort.  I know it's a lot of padding at night, but it keeps me dry.

    They did try switching me back to the pads in underwear at one point but I put in a lot of complaints about them not being suitable and they changed me back - it actually worked out more expensive anyway to switch to the pads as I use about 3 nappies a day and one at night, where as I was using more like 6 of these pads a day as I was constantly scared they would leak if I left them on too long.

    To order them I have to make sure I order them about 2 weeks before I run out, sometimes I have missed the deadline and when that happens I sometimes go up to Incontinence Choice who are in Telford at Stafford Park 18 and buy some spare ones from them - they are about the cheapest place that sells incontinence pads I've found, and if you actually go into their shop they usually have a "bargain bin" in the middle which quite often has some useful things in for £1 - sometimes they have pads that are the right size in there (they might have taken one out for a sample or it might be ones they are discontinuing), also sometimes I've got bed sheets from them for £1 at one point I picked up 4 plastic bed sheets from them for £1 each although I was just really lucky that day as it's very rare they put bed sheets in the £1 bargain bin, and other times I've got plastic pants from the bargain bin too.  Plastic pants are quite handy to have from there as they always go over time.
  • jan67jan67 Posts: 7Member Listener
    Hi everyone. I have bn awarded standard mobility from high dla. I had Mobility car which is goin next week. In order to get about I had to purchase my own car. I need hand controls to drive which cost me £1000. Plus £50 for steering ball. No grants available or second hand ones. Every car that goes back to dealer with controls on are either sold with them on or they are removed and dumped. Plus my insurance starts from scratch. No no claims bonus so it’s £400. And next 4 yrs I hav to pay extra premium to protect my bonus. Can’t believe there is no help out there for people in my situation. Surely these controls on dla cars can be salvaged. When I rang Motability they said I can take controls of myself but will only fit car same as one I had to giv up. Could all Motability customers remove their controls and re sell them or giv to a charity who can sell them on to people who will benefit from it. Especially at this present time when so many people are losing out on such an important part of their ‘normal ‘ life. 
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello @jan67 Pleased to meet you this is cause for concern.  I have just received my Motobility pack, still waiting to be assessed for PIP.

    Looks like a possibility could be in limbo here.  If I ring up because it seems there are certain rules.  If still waiting on PIP or less than a year on present contract.

    I will contact Motobility see the problem sorted.  Why can you not buy the car you have handed back in?   With the controls on Just a suggestion.  I am going to do that, if I have to.

    I am sure you can do that, I do know the car dealer I have been with them such a long time.  They want my business and money.

    It says in the package I have just received.

    The scheme will offer an opportunity to buy the car at the end of the lease.

    The payments that would otherwise have been received upon returning the vehicle can be directed towards purchase price.

    I am so sorry about what has happened to you.  Added costs but there must be some clear advice given.  Should say in package about putting money away or saving plans.  I got a letter the other day from DWP.  All about the procedure and when it is going to happen.

    Please can I say I feel for you and do understand the situation very clearly.

    I have to look to the future, have no body, live alone, isolated village, no good transport links.  Started saving much as I could.

    Hopefully that will be enough.  I know and do sympathise with others in our community.

    I had a couple of years ago remember it well met a lad who had moved into where I lived.  Knocked on my door, lost car through reassessment.  Asked me straight away, lost me car mate.  Right I said sorry.  Did not cotton on.  Why are you here, well you have a car on this scheme.  Could you help me out.  Well in what sense, I replied Oh lifts here and there.  I said who are you and how then the bomb dropped wanted me for a taxi.

    Never introduced himself found out that him and his wife both worked .  His wife part-time.  I casually suggested why did you not put any money away.  Had opportunity.  Give you notice three years, letter came.  Why not have you done anything.?

    I am a Christian charitable gentleman help many of our community and always will.  There is a way to do things is there not.  I did ask I struggle would you help me.  Almost speechless as he just swore and walked away.  I also suggested will you pay me for taking him and his spouse where ever, well his words I will negotiate on that.

    I do not mind if anybody struggling with transport to shops or the odd appointment not that though.

    I mean I gave two people in the shop who parked next door to me, in the parking bay, disabled like me.  Asked me do you have bags mate.  Of course gave them some, still waiting and hoping to get them to give me some bags, no hope.

    This is afraid the same story you have to be prepared for what is going to happen.

    Think of tomorrow I have to.  Weathers getting bad next week, time to plan for snow.  So I hope and pray that you try to get resolved.

    I am sorry about additional costs.  I just hope I have enough put away.  I am not being critical here, I hope I am not.

    Nice to talk to you 
  • CockneyRebelCockneyRebel Posts: 5,255Community champion Disability Gamechanger
    Universal hand controls for automatic cars and sterring wheel knobs can be found on e bay for around £100 if suitable

    Be all you can be, make  every day count. Namaste
  • thespicemanthespiceman Posts: 5,748Community champion Disability Gamechanger
    Hello @CockneyRebel  Good afternoon How are you? Hope you OK. This is why I was trying to say previous post.  You need to access information.  Give your self opportunities to look around what is available.

    Plan and be careful in what you do.  Recently met so many people who for example had my car.  I drive a Nissan Micra.  The car is ideal for a single person.  New model might not come out till Summer.  

    Limited then for choice.  Had to buy Nissan Juke a lot larger than Micra.  Said a lad I met in the car park couple weeks ago.  Problems driving it mate he said.

    I explained did you go on to websites, look around see what is available.  I had three options last time I said.  Just need to look around.  Had no idea.

    All options are open.  I do know if my PIP did end I would consider all access to what is available.

    Consult you the Team at SCOPE to advise on PIP and other information.  You can help with.  Thank you.

    Great to speak to you have not spoken for a while

    Nice to see you nice as they say
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