No wheelchair for you!

My old broken power wheelchair
My old broken powerchair

I wrote back in March about the death of the power wheelchair that I had been given and my quest to obtain a new one.  It was old but it served its purpose in letting me go further from home and use public transport without requiring another person to push my wheelchair. Since my ability to walk is fairly limited I do need a wheelchair when I am out of the house. There are four ways that I know of to obtain a manual or powered wheelchair.

  1. The NHS
  2. Lease one from Motability using the mobility component of DLA
  3. Buy one
  4. Get a charity to buy one

It should be obvious that buying one is not really an option for most people living on sickness and disability benefits. Many people who need a high end power wheelchair do lease one from the Motability scheme however that option is not available to those who already use their DLA to lease a car through the scheme, or who do not receive DLA at all. In some circumstances a charity might be willing to foot some or all of the bill for a power wheelchair. Specialist charities for certain diseases or impairments might do this although in practice most do not have this option either. In my case there is a charity that helps people in the area that I live in who might be able to pay for part of the cost of a power wheelchair for me but since charity funds must be carefully looked after they require me to need a wheelchair but be unable to get one from the NHS before they will help. That leads me to the main option, to ask for a wheelchair from the NHS.

Soon after my power wheelchair broke an occupational therapist referred me to Worcestershire Wheelchair Services and I was told that I would get an assessment but that I would have to wait a long time. In the meantime I bought a manual wheelchair using my credit card. I have a bankruptcy in my past because of my illness so that credit is at an interest rate of 34% APR.

I knew when I was referred for a wheelchair assessment that I would not qualify for a power wheelchair because I only need a wheelchair when out of the house but that was OK because once I had an assessment I could turn to my local charity. As I understood then from other doctors and therapists I should qualify for a manual wheelchair, although probably one with small wheels that required an attendant to push it because self-propelling a wheelchair soon hurts my arms as much as walking hurts my legs. (This is why I purchased a self-propel chair, since I would like to be able to turn myself around even if I mostly have someone pushing.)

Then, today, I received this letter from Wheelchair Services. (Click to enlarge.)

Letter from wheelchair services

The letter informed me that I would not receive any wheelchair from the NHS because in Worcestershire they are

“Currently only able to supply wheelchairs to people who meet higher level needs i.e. to those clients who have a permanent mobility problem, who are unable to walk and who require a wheelchair within their own home.”

So, because I can walk or stagger around at home, I will not receive any kind of wheelchair to help outside where I cannot walk more than a few metres or stand up for more than a few seconds – not even a manual wheelchair. They won’t even visit to assess me. There are also many people who need a power wheelchair but are unable to get one from the NHS because they, like me can walk to some extent around their own home. In a lot of these cases they would use a wheelchair inside if only they could fit one in their home, but because they cannot they too are denied any help from wheelchair services. I know of several people who are currently trying to raise funds through donations to purchase their own power wheelchair because of this.

I’m not too worried about this in my own case because I have the manual wheelchair that I bought, and I have my wife to push it much of the time, and I still hope to get help from a local charity. I am far more worried about all the other people who haven’t been so fortunate and have no chance to buy a wheelchair, no charity help, no car and no one to offer lifts. I struggle to understand the justification for the NHS in Worcestershire not giving a wheelchair to people who need one but only when outside. If applied nationally, this policy would trap tens or hundreds of thousands of people in their own homes, unable to go out to medical appointments, to buy food or to visit family and friends. I don’t know how long this policy has been in place in Worcestershire but I hope that it is the only area doing this.

Worcestershire Wheelchair Service informed me that their qualifying criteria have been this way for a number of years due to low funding. Worcestershire is not looking like a good place for a chronically sick or disabled person to live right now; Worcestershire council are planning to remove funding for care at home for a large number of people and send them to live in care homes instead. This is a huge backwards step, a removal of freedom for a lot of people and reverts to the old method of locking those with disabilities away from society. This policy on wheelchairs will ensure that more people are trapped at home and so require care from the local authority, which in turn may put them into a care home.

Are we as a country really so short of money that this is the route we want to take?

Inaccessible world

After publishing my film “A short film about pavements” this morning I have already had people suggest that I should not use a wheelchair on those paths because it is not designed for them, that I should rely on family or my local church to take me to where I need to go, that I simply want the government to spend more money that we haven’t got to fix the problem, and that it is bleeding heart socialist to ask for things to be made accessible for everyone.

So what was my point with the video? What do I want?

First of all, accessible buses with low floors. This is a reasonable adaption, and in fact a legal requirement by 2015. Unfortunately it takes time to do, and my local bus companies do not think it a priority to implement on the route that goes through my town.

Secondly, I would like broken pavements to be repaired and grass, mud and hedges to be kept back from the path. I can put up with a rattly bumpy ride, but where there are holes in the ground that necessitate my 86kg wheelchair being lifted out of after getting stuck, it’s quite reasonable to ask for it to be filled in.

Thirdly, I would like dropped kerbs at corners. In three examples in my film there are corners with no dropped kerbs, some quite new. At best this is negligence, possibly incompetence. These ramps should have been built in to start with. They are not a special requirement for wheelchairs, they are also needed for baby buggies, and people that have difficulty walking, and even just skateboards and roller skates. I’m sure there are more examples. Where corners have been built without dropped kerbs, these need to be fixed. It’s not an optional extra.

Why do I want all this? If we have no money, why shouldn’t I settle for being driven to the doctor, the pharmacy, the supermarket etc by volunteers from my local church, or by family members or friends? Big Society in action?

First of all, there is no guarantee of getting a volunteer. When I make an appointment with the doctor, I can’t check if there will be someone free to take me there a week or a month ahead. I can’t be on the phone to the doctor’s receptionist and the local church at once, arranging a mutually convenient time. And I have no idea if my father will be available to drive me during the working day, a month ahead.

Then there is the fact that it should not be necessary! I have a powerchair, there are buses, there is a walking route that goes where I need to go. (And is used by other people.) I should be able to use all these things.

I don’t have a car. I am too ill to ride my motorbike. I can’t afford the taxi fare at £17 for a round trip. I can’t walk to the bus stop and then walk around town afterwards. I need to take my wheelchair with me unless I’m not walking anywhere and not standing when I get there. Admittedly, I am going to apply for Disability Living Allowance which will help towards travel costs, but DLA is to be replaced by the much harder to get Personal Independence Payments, and that is going to withdraw support from many people on the basis that disabled people no longer need so much help because everything is accessible now. Everything is NOT accessible now.

I don’t want charity. I don’t want embarrassing reliance on other people. I don’t want to have to beg for help, or to feel like I am an inconvenience, or that I am causing problems by dragging my family or friends out of work to take me to places. I should be able to go there myself. I can go there myself. If only the council and the bus company did their jobs.

 

Thoughts on my first long powerchair trip

I went on my first long powerchair trip on Friday night. It was a 5 mile round-trip from Badsey to Evesham and back. On reflection, this was never going to be an easy journey. There are two routes that can be taken on foot. Unfortunately due to roadworks, one of those was not an option and so my wife and I were forced to take the other route, along the main road into town. This involved about a mile along a rural road with a 60mph limit, and hedges on both sides. Before leaving I checked through that stretch of road using Google Streetview to make sure that there was a path all of the way along. All seemed OK, so we set off.

Here are my thoughts on that journey.

  • My powerchair goes faster than 4mph. I think it probably manages 8mph. Excellent!
  • It doesn’t go as far as it should. The battery light was blinking after about six miles of use, not 24. Maybe a few charge / discharge cycles will fix that.
  • Using a powerchair requires planning to make sure that route and transport are accessible.
  • According to my wife, I operate a powerchair like I play Mario Kart. I’m choosing to take that as a compliment.
  • You can’t operate a powerchair like you play Mario Kart. It likes to stop before making the next move.

And some more problematic thoughts.

  • Getting to a junction and finding no dropped kerbs and therefore no way to leave the pavement and cross is frustrating.
  • Having to backtrack to the last dropped kerb is also frustrating.
  • Having no matching dropped kerb on the other side and having to take the chair along the road is dangerous.
  • Curved dropped kerbs that go round the corner are a pain. Wheelchairs are supposed to take the kerb at 90 degrees to avoid toppling. Having to turn 45 degrees to do that is irritating, AND the pavement is at odd angles that push the chair to one side.
  • A dropped kerb that crosses the pavement all the way to someone’s driveway makes the chair go down then up again. Having these repeatedly all the way along the street makes the chair go up and down continuously. They can also make the chair swerve into the road unless paying perfect attention and deploying light-speed reflexes.
  • A dropped kerb is supposed to be dropped. That means going down to road level. Not two or three inches above it. When a chair goes over that, it lurches wildly back and forth.
  • When a too-high kerb is combined with a round-the-corner curved dropped kerb that simultaneously goes up a hill on one road and down a hill on the other road, the combined angles plus speed necessary to climb the kerb mean that the chair will topple.
  • Flailing wildly when going over will wrench muscles, twist the back, neck and shoulders, and cause extreme pain and swearing.
  • Finding no way to get from pavement to road to pavement so that you can cross is bloody annoying. Did I already do that one? Well I’m doing it again because it’s BLOODY ANNOYING.
  • Tree roots growing under the path and tearing it up can lift one side of a chair, causing it to tip disturbingly to one side.
  • Cars parked on the pavement deserve to be scratched as I go past.
  • Pavements full of pot holes, cracks, patches and worn away surface are not just a minor irritant, they make the journey a hell full of dragging, rattling, lurching, bumping and worse.
  • A path is supposed to be wide enough to use. Six inches of goat trail with smashed up tarmac surrounded by tall grass and weeds right at the edges on both sides is not acceptable. Grass to within six inches of the road edge is definitely not acceptable.
  • Paths so old that their height varies by several inches NEED FIXING. You can’t leave that.
  • I got stuck on patches of broken pavement so bad that one wheel went in a hole. Not once, but twice. I couldn’t avoid the hole because the grass verge had covered the pavement.
  • I had to negotiate places where the broken, narrow path went through potholes, gravel and old stones at the edge, merged with driveways, with grass covering it at 45 degree angles. I lurched wildly. I nearly went over. And this happened in at least three places.

I’m going to stop there. There are more things, but I have complained enough for people to get the idea. OK, so most of the time I won’t be trying to travel from my village to the town, but I should be able to. It should not be a challenge, it should be a nice smooth ride along tarmac or paving slabs. Not a wild lurch along broken, grass-covered ancient pathway.

Oh, and I did manage to get to town and back, but not before the shops had closed, rendering my trip to buy cheesecake completely meaningless. I enjoyed a coffee at my sister’s house instead.