Tag Archives: Advice

Motability and other bureaucratic delights!

I’ve recently ‘met’ a newly-diagnosed fellow MNDer via Facebook (the wonders of social media indeed!). Finally, after ridiculous amounts of hoop-jumping, she’s recently been awarded DLA and is now ordering a new car through Motability.

Having spent nearly eight years with what’s thankfully now become ‘slow-motion-ALS’, I’m always worried about people who are starting their journey. The fact that it’s virtually impossible to anticipate what parts of your body are going to fail next added to not knowing what to do or how to cope when that happens makes it seriously unlikely that anyone will pick a car that will still meet their needs in a few months time, let alone throughout the three or five year contract. I decided to write her an email and explain my hideous experiences. Then I thought I could post it here & hopefully it might help others in a similar position. Here it is.

‘well, i originally got an automatic focus but within months i could hardly get in it, let alone drive it. i then bought a passenger seat which comes out of the car to make transferring easier. i still have it so if you want it at any point you’d be welcome to it.

‘so, a year in, that became too difficult and i spent another year trying to get an early end to the motability contract. i eventually got a kia sedona with a ramp at the back so i could stay in my wheelchair in the boot of the car. now the five years of that are up, i’m finding it really inconvenient & uncomfortable being in the back. if i sneeze or dribble i have to wait for the driver to pull over, get out & climb in the back to wipe me. the suspension is really tight in the back for the lowered floor which means that now i’m weak i bounce around in the back quite painfully. i’ve hit my head on the ceiling, bitten my tongue, come out of my chair, etc. a few times. it’s horrible.

‘this time i’m getting a VW transporter that is adapted for me to sit in the front passenger space. there are smaller up-front WAVs available – you don’t have to have a bus! i just need the space for my equipment when we go away.

‘if you get a wheelchair accessible vehicle – WAV – you can still drive or sit in the front but when you lose your ability to do that you can relax, knowing whatever your needs are the car will still work for you.

‘i’d be very happy to help you in any way i can, maria. if we have to endure this hideous disease then we need to get what we’re entitled to!’

As an addition, please message me if you would like the retractable front seat. It’s in my mum’s garage. She wants rid and I’d far rather someone was using it!


Handy Links (see above).

I’ve spent today compiling a page with various links that may or may not be useful – check ’em out. If there are more that you’d like me to add, leave a comment. I’m sure I’ll be adding lots more.

Here goes.

Since I published my first post yesterday, I’ve had loads of really positive feedback, which is definitely encouraging. However, I’ve also had a timely reminder in the form of a nice ILF (Independent Living Fund) man that, while I fight my own battle for healthcare funding some people are fighting to stay on Direct Payments in order to retain their autonomy and be able to choose who provides their care. Some PCTs have contracts with different agencies and they decide who they’ll pay, not you. What I’m saying is make sure that what you’re fighting for is actually better than what you do or don’t have right now.

Assuming that you’ve worked out that you do want to apply for NHS Continuing Healthcare funding, the following two links are essential initial reading. Don’t be put off by the length of the text; it’s written in plain English and is easily skimmable (despite my friend being told, haughtily, by a PCT assessor, ‘Oh, well, lay-people wouldn’t be able to understand it’! In my experience, the only people who can’t get their heads round the Department of Health regulations are the Continuing Care teams themselves).

The first link is to the the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, July 2009 (revised).

The second is for the NHS Continuing Healthcare Practice Guidance, published 1 April 2010.

I think  that’s enough to be getting on with for now! More soon.