Your wheelchair is your life. You depend upon it to move from room to room, to go outside, to go further than your front door. However, NHS wheelchair provision is hamstrung by incompetence, and this wastes money and time on a grand scale, while denying me mobility and independence.
My standard powered wheelchair seat-to-ground height is 2 inches more than my manual wheelchair but I can manage. Then, two events made that chair unusable; I broke my right knee in 2011 and I had abdominal surgery last year for Crohn’s Disease, leaving me with an ileostomy1 on my right side. The combined effect is I can’t throw myself around any longer to get into that chair.
I can transfer from my manual wheelchair to a bed, sofa or toilet , and back again, as long as they are an equal height. This is 17 inches/43.18cm, give or take a millimetre or two. Anything higher and I’m out of luck (which is why those grand disabled loos can present a problem!)
I ask the Wheelchair Service for an assessment, my first since 2001. In fact, the manual chair I sit in today I received in September 2001 as a result of my first assessment here in Wigan.
I explain my problem with transferring to the higher wheelchair following my operation and offer to demonstrate my lack of high jumping skills.
The first hurdle
Powered chairs have changed a lot since I had a new one. Some of the best ones have fixed plates for seats, which mean the chair doesn’t flex or move beneath you; they are very comfortable. They are also routinely 19-21 inches high and out of my league. I know, I’ve done research.
The Wheelchair Service first tell me they can’t help because the only chair they can supply is one I can’t sit on. I complain, and challenge them to think again; what about a child-sized wheelchair? I’m only 4 feet 9 inches tall, that might work because they have lower seat-to-ground height.
I know what I want, what I really, really want
Want is the wrong word; it’s not want just because I can. There’s a solution to this problem and it’s the Alber E-Fix. Powered wheels that turn a manual chair into a powered chair. There’s a version that fits exactly the same manual wheelchair that I have, you know, the wheelchair we know I can get on and off alone?
No, instead we go off down the route of finding a more usual powered wheelchair and in November I’m provided with a Sunrise Medical Quickie Salsa R. We’ve got a teenager’s version, which gives a low seat to ground height, and with the nice thick cushion to protect my bum from pressure sores on that metal plate, everything looks good. It is a lovely chair, very comfortable to travel in because it’s so sturdy.
I do like the chair. I really want it to work.
It is obvious by December that I can’t use the new powered chair . More than a couple of hours sitting in it and I can’t feel my legs and I get back pain that lasts for days afterwards. This is due to the lovely thick cushion; it’s slightly too soft and irritates my back where I had surgery for disc removal over 20 years ago. Anyone who has back problems will tell you that how you sit, and what you sit on, are tremendously important to keeping pain-free.
Meanwhile, coping with my more obvious disability Arthrogryposis and general movement is just as difficult; I lift my arm, the cushion gives a bit, I have to try to lift my arm higher to compensate, but I can’t because it physically doesn’t go any higher. Making a cup of tea becomes an exercise in futility. The only good thing about that, no drinking means no bathroom trips because I can’t out of the chair onto the loo anyway!
I’ve given it a go, I’ve tried my best; the chair isn’t working. I can count on one hand the number of days I’ve been out this year. Finally, the Wheelchair Service agree to a new manual chair with the Alber E-Fix powered wheels, and order it the week of April 7th.
I watch quite a lot of nice weather pass by; that was probably Summer, you know.
One sunny day, 3rd June to be precise, my Mum pops in on her way to town and I get all nostalgic for a trip out myself. I’ve had two days outside in May; one for my husband’s birthday, and one to go with Mum to a hospital appointment for a couple of hours.
I call to check on my wheelchair progress.
- The good news – it’s in the country.
- The bad news – delivered to the wrong place, the chair is now on its way to Wales for fitting with the powered accessories.
Fortunately, it rains a lot for the next three weeks. And I don’t gaze longingly outside into the garden, imagining drinking my cup of out there.
Today I decide to call and check progress again; the sun’s out and I’m looking for that cup of tea in the garden. And there’s somewhere I need to be soon, and I need a wheelchair I can use.
- The bad news – they’ve had a bit of trouble with my chair.
- The very bad news – they lose the chair. Wheelchair Company 1 say they delivered it to Wheelchair Company 2 for fitting with the power accessories.
- The very, very bad news – Wheelchair Company 2 maintain they don’t have it.
- The worse news – Wheelchair Company 1 say yes, they do, look, Wheelchair Company 2 signed for it two weeks’ ago!
- Some slightly better news – Wheelchair Company 2 suddenly find my chair yesterday and will prioritise it, but can’t say what that means in terms of time.
- The terrible news – the person dealing with the provision of my wheelchair goes on holiday for the next two weeks and this (usually) delays handing over the chair.
It’s funny isn’t it, a right comedy of errors. I’d be laughing myself if I were you. Except, if I were you I’d probably be able to get out of my back door into the garden, or go out for coffee with my Mum, or even get to see the doctor under my own steam.
Here we are, one full year since that wheelchair assessment and I still haven’t got a wheelchair that I can use.
- That means being unable to get out of the door alone.
- That means my husband lifting me to use the current powered wheelchair.
- That means I can’t go to the loo while using the current powered wheelchair, unless my husband lifts me.
- That means when I do use it for a short while, paying the price with pain for the next few days.
What a waste of NHS time and money:
- The extra visits after the first assessment last June, 2015.
- Buying a powered wheelchair I can’t use.
- A further visit determines the manual wheelchair with powered assistance is required.
- More time spent ordering the second chair.
The truth is that there are few wheelchair companies and they know there’s nowhere else the NHS can go to provide wheelchairs to their clients. The NHS is a captive market and receives abominable treatment; they may get discounts because they are such a large customer, but the service is appalling.
No ordinary person would put up with such shoddy service in the real world. Imagine a garage treating you like this? You would walk away and spend your money elsewhere if it took this long to get a car.
The NHS should fine companies when they don’t deliver, when they offer such poor customer service. It’s costing them time and money; this is why the NHS struggles, no one stands up and says “This is not good enough!” It’s a job and no one truly cares. Doesn’t anyone realise this is our money they’re wasting, yours and mine?
Everyone moves like they are wading through mud at Glastonbury. No, that’s not true; people manage to move faster in the mud of Glastonbury!
In an alternative universe:
- I have a wheelchair assessment in June 2015.
- We agree I need a manual chair with the powered assistance added, because I am unable to transfer to anything higher than 17 inches.
- The NHS Wheelchair Service orders the manual chair with additional E-Fix.
- No one misplaces the new wheelchair – hopefully!
- Delivery of the new chair takes place, let’s be generous and say, at the end of August 2015.
- I have enjoyed 10 months of independence including meeting my Mum in town or accompanying her to hospital appointments, drinking tea outside in the sunshine, going on holiday with my husband, transferring to the loo, meeting friends in town for a meal, oh, going anywhere just for the fun of it, just like you do.
- The time and money saved is substantial, perhaps enough to pay half a nurse’s salary.
Wouldn’t it be nice?
As I finish writing this I receive a phone call. Fitted with the powered assistance wheels and controller the wheelchair is on a van and on it’s way up north. With a fair wind it may arrive in the local area tomorrow, and there’s been a cancellation so someone will deliver it next Monday.
I said I’d do dance. I was lying; I can’t dance.
And, while I am so very grateful that this chair might be here in a few short days, I can’t help but think, “What would have happened if I hadn’t called to check on it today? How long would I be waiting?”
1An ileostomy is an opening in the abdomen with a stoma, and waste from the intestine is collected in a pouch stuck to the skin. I know, ugh, you’re thinking. Well, better ugh than dead, which is what I would be without it.