Sunday, July 26, 2015


As most people who know me are aware, I currently have Alber E-Motion M15 power assisted wheels and I have loved them for every minute of the five years I've had them.

I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.

Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.

I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.

We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.

One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.

A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.

The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.

This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.

The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.

Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.

The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!

Part 1 Part 2


Chronic Chronicles said...

Where abouts are you? I know someone who covers London/South East.

If you're further away, it might be worth giving him a call and asking whether he will assess you over the phone. He's very good, despite the website being a bit dodgy.

I too got my wheelchair from Access to Work. I now can't work - and dread anything happening to the chair. I'd be totally housebound, and our NHS Wheelchair service is just as useless.

Mel said...

I realise I'm a bit late to the party, but I've got a few ideas that might help.

I bought my wheelchair entirely privately after being refused on the NHS and inheriting enough money to get something better than a standard chair. I have a Kushall with e-motions which I got from Better Mobility, who were brilliant, very careful not to encourage me to have anything I didn't need. Equally they really listened to what I did need. I've also heard good things about EPC wheelchairs and Gerald Simmons. Unfortunately all of these are in the south.

I think any mobility shop which has the BHTA logo is certified to sell wheelchairs you have to be measured for, and therefore I'd consider them trustworthy.

Additionally, if you are concerned about cost you can get powerchairs via the Motability Scheme, which would spread the cost and also provide you with reliable servicing.

Lastly, I was browsing the mobility/wheelchairs section of the NHS choices website this evening (for reasons too long-winded to go into), which said that you can try different types of chairs at disabled living centres. The link to the directory was broken, but I'm sure a quick google or a phone call the council could locate your nearest one.

Mary said...


The OT put me in touch with the local independent living centres but their responses were all along the lines of: I would be welcome to come and try out rising armchairs, or walkers, or interestingly shaped cutlery, but that powered wheelchairs were NHS Wheelchair Services.

Motability is out - I currently get DLA high rate mobility, but my last DLA assessment said I could walk "up to 30 metres". I think that's a bit high but didn't see the point in arguing the toss, because high rate mobility was high rate mobility, all arguing would do is give them an opportunity to take it off me! Except some time soon I'll be transferred to PIP, and the new cutoff for enhanced mobility rate is 20 metres. In other words I can't depend on keeping Motability eligibility and can't risk having a chair I depend on yoinked out from under me. :(