Hello all – me again – and this time I’ll be concentrating on how costly being disabled is and how easy or difficult it is for me to get around and about.
To have any kind of mobility I need to be able to get about, complicated by not having a functioning set of pins, and because of what happened to my arm I have been restricted to using a powered chair. I’m not encouraged to call it an electric chair, for obvious reasons, but I do because I’m awkward like that. Anyway my truck of choice is a Quickie Jive-M Hybrid – introduced to me at Stanmore by a Sales Rep who had been invited to demonstrate a number of spaz chariots to the inmates by my Occupational Therapist. I’ve no complaints about it, it handles the slopes and lumps and bumps here admirably all things considered, but it isn’t an all-terrain truck. Even so it was blooming expensive! We shelled out the best part of £8,000 for it, not helped by the fact that they can only be bought through a registered dealer, so adding to the mark-up. Two electric motors, two batteries, a modular chassis and a few bits of electronics all for the price for a decent second-hand car. A brand spanking new little car would only have been a couple of grand extra. The cost of spaz mobility kit takes some understanding, even allowing for mass production and economies of scale but this isn’t where it ends. I was in Stanmore with a bloke who went in hospital to have a stent and came out paralysed from the waist down. That was seriously unlucky but he wasn’t going to let that stop him from going fishing, so he went out and sorted himself out a 4 x 4 wheelchair. The cost? £17,000! While I was in Stanmore Karen and I went to a Mobility Exhibition at Silverstone, a grand day out but heavens do they see you coming! There was a powered chair there that could stand you up, a very useful gadget because getting vertical drops all your insides info place and helps in all manner of ways – but it cost £20,000! A bog standard standing frame would cost me well over £3,000.
Then how about getting down to the shops for a pint of milk and a baguette? Every shopping trip is an adventure, made easier by the fact that we’ve now got a Mercedes! Don’t get over excited – it’s a 2012 Sprinter mini-bus that has had a full-blown conversion that includes Jim Doran manual controls, a Ricon powered lift at the back, wheelchair seat docking stations at the drivers and mid-passenger locations and two fold-down passenger seats in the back. The chair docking station allows me to drive the van, subject to me sorting out my driving license here in France, as it’s electrically controlled so I can get in and out of the driving position and then in and out of the van. It works like the 5th wheel on an articulated lorry and they pass all the crash-test dummy regulations, but again to get my chair adapted I had to go through an approved supplier – even more expense! My main problem driving will be with my balance, but hopefully after my shoulder operation and some serious physio I’ll get back the strength I need to be able to support myself enough. I have no doubt future blog instalments will cover this. We found the van on EBay, it only had 4,000 miles on it (it’s still only got 8,500 on it) and it got us here to France like a dream. It’s a conversion by a firm called O&H, Oughtred and Harrison, who specialise in ambulances – which is a little bit spooky because Karen’s family used to make ambulances – going back 3 generations (those of you of a certain age might remember the Matchbox and Oxford toy Lomas Bedford J1 Ambulances). Now I know the Sprinter had a hefty purchase price when new but when I was told that the converted vehicle came in at over £70,000 I was staggered but fortunately our pre-loved truck was a fraction of that – depreciation really bites specialist vehicles on the bum!
I have a theory about why things cost so much for handicapped people.
Firstly, the main customers are Health or Social Services, both in the UK and elsewhere, who support those with the problems – and a great job the front-line staff do, struggling day to day with the needs of their patients and the restrictions imposed by their managers and pay-masters. And here’s the issue, organisations top-heavy with managers but how much training do NHS or Social Service managers, or any Civil Servants for that matter get in contract negotiation? I think the Carillion disaster and potentially the forthcoming Capita saga answers that question – obviously nowhere near enough and as a consequence they get run ragged and taken for fools. The UK Government is seen as a cash cow and the Tories show no shame continuing to feed all these firms who provide us with what should be basic services, and so they take the p##s. Drug companies still try their best but restricting the NHS to using generic drugs rather than still licensed branded drugs has reduced that cost – although it still impacts me as you will see as this develops below. I firmly believe that the NHS and Social Services are being ripped off by their suppliers and unfortunately privatisation by stealth of the NHS under the Tories will never stop that. When we were in London it was accepted that I needed an electric chair and Social Services would have provided me with a standard one – but they were stuck with a supplier and didn’t have the authority to negotiate a price or even allow us to contribute to a better machine. Even then a chair from the Social Services was dependent on the house being passed as suitable. Unfortunately it didn’t – a narrow hallway and narrow doorways prevented the use of a powered chair and there was no way the house could have been adapted – which is why we are here in France.
Secondly, many people who find themselves disabled after an accident often get a large compensation payment after the event, and the people who provide the equipment needed to make these newly impacted lives as easy as possible know this. So guess what? Yep, they all want their share of the insurance money. It isn’t considered as the individuals lifelong sustainability pot – which is usually what it is – it is there for them to plunder, albeit with a smile on their faces as they explain how good their products are. I’ll give you a personal example. At the Silverstone event I mentioned above we spoke with a firm who convert cars into what they call WAV’s – wheelchair accessible vehicles – with a view to buying a new Citroen Berlingo that I could drive. It would have cost us £30,000. No name, no pack-drill as they say – and it wasn’t O&H. We were serious, made a firm enquiry and waited for the Sales Rep to get back to us, and waited and waited and waited. In fact we are still waiting, over 18 months after the event! E-mails have all gone unanswered and phone calls fobbed off with platitudes. The only reason I can think of as to why is that the Berlingo model had just been superseded and the new Berlingo wasn’t approved for conversion by Citroen As there were no stocks left of the earlier model and we weren’t in the market for a big van conversion – this firm also converted big Mercedes and VW vans some costing almost 6 figures – we were just ignored.
I was lucky in that whilst I didn’t get any 3rd Party compensation I was covered by my employers 24/7 employee insurance, which has covered a lift in the house so I can get upstairs, my chariot and the van. It was also fortunate that we already had the house in France. Those who have got seemingly big pay-outs have to make that cover their physical requirements (lifts, vehicles, housing etc.) and all their care requirements (nurses, care assistants etc.) for whatever time they have left – usually we have the same amount of time left as we did before the accident so a 20 year old kid who has ended up in a wheelchair after a car clobbered him might have anther 60 years in front of him. How scary is that? Personally the thought of living another 15 or more years like this has me thinking about all the rat poison sold in the local shops – it really is a scary proposition! Anyway, enough of that, with the ever tightening financial limitations being felt by Health and Social Services what might seem like huge amounts of money actually aren’t – imagine if you had to pay for 365/24/7 care for 30 years and at the same time throw in the cost of an adapted house and even a replacement wheelchair and vehicle every 10 years. How long would even a modest pay-out like £500,000 last? With the Tory predilection towards means-testing any amount of money in the bank will see them deny their responsibilities and leave it all to be self-funded. With the effects of Tory and Lib Dem imposed austerity biting deeper and deeper the most vulnerable in society have already lost the most, but this vulnerability leaves the disabled open to other dangers, abuses even, in that their support costs will continue to increase whilst their savings vanish or stagnate through the lack of interest they attract.
I despair, I honestly do.
Another issue that concerns me, as alluded to above, is the ongoing cost of my lifes new necessities, you could even call them my ‘bare’ necessities, those simple bare necessities (be honest – you love this don’t you) that enable me to enjoy some kind of life.
I have to use catheters to pee – Hollister 71144’s to be precise – and I go through 5 boxes every month – 150 catheters a month – at 115€ per box, which runs out at 575€ per month or 3.8 ‘ish € a go. I don’t pay for them, the NHS did when I was in the UK and the French do now but lets get real – that’s over £3 for a plastic bag with a plastic tube stuck on the end of it every time I need a pee! Alright it’s sterile but for crying out loud someone is having a seriously expensive laugh at all us tax-payers! I don’t know how much they cost in the UK , in the USA they are almost 5$ each, 140$ a box. The €’s figure is what my Pharmacist here in France ultimately charges for them it doesn’t look peculiar to France even though things don’t always compare well with the UK. For instance one of my drugs – fludrocortisone – works out at about £1.50 per month in the UK for a 0.1 mg daily dose. Here in France it costs over 110€ – the only difference is the UK supplies a generic drug in a little brown plastic pot and here in France it comes as a branded drug – Flucortac. Believe it or not in the USA you can get it for your dog for 78 cents for a tub of 100! Things are changing here as generic drugs are promoted and people are advised to ask for them, where they are available, rather than take the licensed version but there is still a lot to do.
So what’s it like getting out and about in a chariot in France I hear you ask?
Well the first thing you have to know is that we’re in the foothills of the Massif Central, about 70km from some big hills, so big they are currently covered in snow and enjoying the attentions of some serious skiers. In other words it’s a bit on the hilly side. Now as I’ve already said my truck is pretty good handing the outdoors and pretty steep slopes, paved or otherwise, aren’t a problem. The downside, access wise, is the fact that the area (like most of rural France in fact) is rich in it’s medieval ancestry and history – the towns and villages are old and everything is built on big chunks of granite so to get in and out of them means going up steps. Streets are often cobbled, which makes for a bumpy ride for me, and kerbs are sometimes a bit of a problem but I just take to the road. Drivers, to a man and woman, give way to me charging along at 15 kph and are always happy to wait while I get about. You can forget about all the old cliches about the French – they really are a nice bunch of people. Most shops have ramps where they are needed, maybe not permanent, and where they are portable it’s never a problem getting them out. In fact the people here are really helpful – the local Intermarche supermarket in Auzances have even given us a ‘chariot’ – a shopping trolley and not to be confused with my electric chariot – to make it easier for us to shop. We now just wheel – sorry, Karen now wheels – a full trolley into the van, drives it home and wheels it into the house. Bob’s your Uncle – no struggling with shopping bags. Me? I just sit there feeling guilty at not being able to do much but offer moral support. Anyway, I digress a little, but it makes a good point about how lucky we are to be in this part of France.
What is worth remarking on is the accessibility of all the restaurants, regardless of how up- or down-market they might seem. There isn’t one we’ve tried, from posh hotel dining room to cheap and cheerful working man’s ‘menu de jour’ cafes that isn’t easy for me to get into or get around. We have a number of favourites, and we like to go out once a week to eat, always at lunch time, because it’s a great change of scenery and, more importantly, it gives Karen a break from cooking and tidying up afterwards. A couple that warrant a mention are Le Damier and Les Soleils. Le Damier is a lovely place, a family run establishment that offers well priced quality nosh with a welcoming smile. It is part of an organisation called ‘Les Toques Blanches du Limousin‘ – where a group of restauranteurs got together back in 1965 to promote themselves and their styles of cuisine in the Limousin – which covers Creuse, Correze and Haute Vienne. They continue to this day promoting each other, local produce and regional variations in cooking and if you are ever in this part of France we would recommend you look up one of the restaurants – the web site has all the details.
Les Soleils is probably our favourite and whilst at the other end of the culinary spectrum is no less a great place to eat for that. Les Soleils is run by twins Jehan and Colleen, in their mid-20’s both of whom have become firm friends. Jehan does the cooking while his sister runs front of house and they do a great job. The food is simple home cooking with a rustic touch – wholesome, tasty, filling and not at all expensive. It’s all locally sourced and organic – the pate comes from the ducks on the pond outside and the veggies are grown in the field just down the path, in fact when you eat the vegetables will only be about 2 hours out of the ground – beat that for freshness Mr Sainsbury! In fact the whole family have taken us in and their Dad – Herve – considers us as part of the family. The restaurant is at one end of a converted barn and Herve has a small theatre at the other end, where we have seen a couple of musical performances. Herve lost a leg in an accident many years ago so he understands more than most what I have to try to deal with in a wheelchair and you can guess how easy he has made for people like me to attend. We spent New Years Eve night at Les Soleils and we had a great night, eating and enjoying good company and afterwards Jehan’s poetry set to music by the lad who grows the veggies we had just eaten.
So in conclusion; the cost of being disabled is often frightening in it’s exorbitance and of real concern, whereas the problems with accessibility are not insurmountable – although sometimes a bit of a pain. We don’t see many people in wheelchairs, I don’t know where they are all hidden, but there are plenty of facilities to enable inclusion here, parking spots, wide shop doorways, disabled toilets and extremely accommodating people so it must be a matter of choice that keeps people in. Maybe the better weather will help, who knows.
Thanks for taking the time to read this and I’ll post again soon.
Jem