Saturday, 12 December 2015

Disability and the high cost of living.

We've read the newspaper stories and watched them on TV - the benefits scroungers.  They haven't done a days work in their life, they all have a big TV and get everything for free, right?

I am constantly surprised by people who assume that because I use a wheelchair I don't have to pay for anything.  It couldn't be further from the truth!

But the NHS is free!

Yes, up to a point, but there are some things that you still have to pay for.

To qualify for free prescriptions you have to be on a means tested benefit, such as Job Seekers Allowance, have a medical condition that exempts you such as a thyroid condition or be completely housebound. You can find out more here: Help With Health Costs.

My husband works full time so have to pay full price for my prescriptions.  At £8.20 each it would cost me around £600 a year for my medications! Luckily there is another option for me - a pre-payment certificate.  It costs £104 a year, I pay for it is 10 instalments of £10.40 and it covers the cost of all my prescriptions.  It works out a lot cheaper but it's still a cost that health non-disabled people don't have to pay.  It also doesn't cover the costs of the supplements and vitamins that have been recommended to me by my specialists which set me back around £400 a year.

Because I am not exempt from paying prescriptions charges I also have to pay for other medical treatments too.  I have Sjogren's Syndrome and the symptoms can cause dental problems.  I have to pay for two dental check-ups a year plus I usually have to have some work done. In the past 12 months I have spent over £250 on dental work.  I look after my teeth very well but the problems are unavoidable due to the complications of Sjogren's.  Just another perk of being chronically ill.

One of the possible side effects of taking Hydroxychloroquine is potential problems with eyesight so it is vitally important that I see an optician once a year to make sure the drug is not damaging my eyes. That's another £15 a year plus the cost of a new pair of glasses if my prescription has changed, which cost around £50 for a budget pair of frames.

I live in the East Midlands and there aren't many local consultants with the expertise to deal with my health problems.  That means I have to travel to London to see my doctors.  I don't qualify for free hospital transport and I can't leave the house on my own so that means my husband has to take a day off work and either drive us to London or go with me on the train. Depending how far in advance I can book the train tickets they can cost anything between £70 and £150, which is a pretty big cost for attending a hospital appointment.  Sometimes if the appointment is scheduled for very early in the morning we have to travel the night before and stay in a hotel, which can cost £60+ a night.  Four trips to London a year can be around £500 - all for the sake of managing my complex conditions.

Physio therapy is also another cost.  It is usual practice for the NHS to allow 6 sessions on one body part before the patient is discharged - which for chronic conditions is no where near enough.  After 6 sessions you are discharged back to the care of your GP and if you still need help you have to get re-referred and wait anywhere from a few weeks to a few months for your next 6 sessions.  Private physio is the only feasible option for some people but at a cost of around £40-£50 a session it can be prohibitively expensive.

But you get a wheelchair for free!

Yes, I have an NHS wheelchair but that does not meet all of my mobility needs.  I'm not sure what picture comes into your head when you think of a wheelchair, perhaps something lightweight and sporty like wheelchair basketball players use?  The kind that Wheelchair Services usually hand out are the big heavy old fashioned looking chairs that you'd find pensioners in nursing homes sitting in.  They are heavy, they are difficult to propel even if you are relatively fit.  I can't push my chair more than a few feet, and that's indoors on a smooth, flat surface.  They are also difficult to fit in a car so going anywhere is a challenge plus it's difficult coming to terms with the loss of independence if you need someone to push you everywhere.

If you don't like your NHS chair there are other options, but that will cost you extra.  There is the voucher scheme where they will give you a voucher for the value of a standard NHS chair and you can pick whichever chair you want but you have to pay the difference and you can only use the voucher at certain approved suppliers.  You can buy your own wheelchair but something ultra lightweight and sporty can set you back up to £4,000!

If you can't propel a wheelchair yourself  there is always the option of a powerchair but don't expect to get one on the NHS unless you are a full time wheelchair user and it is impossible for you to self propel.  And even if you do get a powerchair on the NHS they will only usually provide one for indoor use.  If you want to move around independently outdoors you will have to buy your own suitable powerchair and than can cost between £2,000 and £8,000.

Mobility scooters are a slightly cheaper option.  Starting at around £500 you can buy a car boot model which will dismantle and fit in a car boot.  These are great for nipping around the supermarket but they have limited battery life and are not great on pavements or uneven surfaces.  Larger scooters can cope with most terrains but they cost more, up to £8,000 and of course they won't fit in your car so you would need a van or a trailer if you wanted to use it away from home.

If you can't afford those prices you can lease a chair or scooter through the Motability scheme.  For a £100 deposit you can use between £20 and £55 of your weekly Enhanced Mobility Component of PIP or Higher Rate Mobility DLA allowance, but only if you're not using it to lease a car.

But you get a car for free!

You can get a car but it's not free.  If you apply for a Motability car you get it instead of your mobility payment so it costs you £57.45 a week.  The government has made it harder for people to do this by changing the eligibility criteria for PIP so if you can walk more than 20 metres you're not disabled enough to get a Motability car.

Some cars also require a non-returnable advance payment. The smallest, most basic cars have a zero advance payment but if you want something big enough to put your wheelchair or scooter in you may have to pay up to £9,000 up front.

But you get house adaptations and equipment for free!

No, not unless you're on means tested benefits.  There are grants available if you meet the eligibility criteria but if you have savings or a partner who works then you will have to fund adaptations and equipment yourself.  I have been assessed as needing a stair lift but because my husband works full time the OT told me it would cost £9,000 which is well beyond my means, so when I'm having a bad day I have to crawl up and down the stairs.  

I also need a bath lift.  I was offered one on loan but I turned it down as it did not meet my needs.  The OT recommended a different kind, but their department didn't supply them so I'd have to buy my own, at a cost of around £600.  I was also expected to purchase other aids such as an Easi-reach grabber and suction cup grab rails as the walls in my house were not suitable for the permanent ones the OT department supply.

So as you can see having a disability isn't the free meal ticket that some people make it out to be. Disability benefits such as PIP are there to help people with the added cost of living with a disability and those costs can run into thousands of pounds.  

There will always be people who would rather sit at home watching their big TV, but when you think about how it would cost them tens of thousands of pounds for an electric wheelchair and an accessible vehicle just to allow them to get out of the house then maybe £500 for a TV that provides them with entertainment and a window to the world outside then it doesn't seem quite so extravagant after all.


  1. Excellent post, sharing it on twitter :)

  2. What kind of staircase do you have Clair? My mind is boggling about what kind of staircase would need a £9K stairlift! I bought a new, Stannah, stairlift, from the local dealer, for just over £5K (Stannah were about £500 more expensive if I bought direct from them). That was about a year ago and for a staircase with a 90º bend in the middle. If I'd had a straight staircase, it would have been much cheaper.

    It should be possible to get reconditioned lifts for a lot less - and I don't know how other makers would have compared on cost.

    1. Hi Serena! My staircase is U shaped so the stairs go up, turn a corner and double back on themselves. There are doors to either side of the bottom of the stairs and an open corridor at the top. It's not ideal but the OT assured me it would be possible to find a solution, but it wouldn't be easy. I haven't really looked into having anything custom made because the OT put me off with his £9K estimate. We have practically no savings at the moment and can't afford to borrow the money.

    2. Hi Clair, yes, I can see that that's not going to be easy to find a stairlift to fit that. I suspect the doors at the bottom are likely to be the biggest problem. I think there's a good chance that it would come in for less than £9K though but it wouldn't be cheap :(

      Judging by my experience, a local dealer may well be cheaper than getting one directly from the manufacturer, so it could be worth talking to one, just to see what your options are.

  3. I should have added, when I commented earlier that it's an excellent post - you're right, it is expensive being disabled!