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

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  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
    edited January 2018
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    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
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  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
    edited January 2018
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    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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  • [Deleted User]
    [Deleted User] Posts: 1,741 Listener
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  • foxuk
    foxuk Community member Posts: 103 Pioneering
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    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!

    Jon




  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Disability Gamechanger
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    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!!


    Scope
    Senior online community officer
  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
    edited January 2018
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    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.
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  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
    edited January 2018
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    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.
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
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    @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!

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • CaderMac
    CaderMac Community member Posts: 105 Pioneering
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    I once read that, on average, raising a disabled child costs 8 times as much as raising a non-disabled child....... eight times!!!!!!!!!!!!!!!!!!
  • foxuk
    foxuk Community member Posts: 103 Pioneering
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    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.

    Jon
  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
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    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.
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  • Cheese2323
    Cheese2323 Community member Posts: 4 Listener
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    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
  • foxuk
    foxuk Community member Posts: 103 Pioneering
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    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

    Jon
  • Markinsutton
    Markinsutton Community member Posts: 83 Pioneering
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    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  
  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
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    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.
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  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
    edited January 2018
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    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.
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  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
    edited January 2018
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    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.
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  • foxuk
    foxuk Community member Posts: 103 Pioneering
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    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

    Jon


  • Nystagmite
    Nystagmite Community member Posts: 596 Pioneering
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    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.
  • foxuk
    foxuk Community member Posts: 103 Pioneering
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    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.
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