Oh, the irony

I was referred for an OT assessment back in April. I actually saw the OT just over two weeks ago.

One of the great many questions I was asked (the form had approx 17 pages) was about social involvement. I told him about volunteering for Citizens Advice. He asked if I liked it and we somehow got onto the topic of benefits advice. He mentioned that another service user he had been to see had shown him the medical report from their work capability assessment for ESA.

Being that for almost two years now I’ve been doing a lot of supporting clients through either the Mandatory Reconsideration or appeal processes for disability benefits I knew where that story was going. The medical report bore no resemblance to the service user’s actual medical condition/abilities.

The OT was shocked by that. I wasn’t. I told him how I often see things like “Emma can sit for an hour” or “Emma can concentrate for an hour” in reports and when you ask the claimant tells you they weren’t asked. Digging deeper often finds they were asked something innocuous like “did you watch TV last night?” and the assessor has assumed that “yes, I watched bake off.” Means they sat and concentrated for an hour. Never mind that they may have lost track of what was happening part way through and may not have sat to watch it.

The OT said he would tell the other service user that he should think about coming to Citizens Advice for some help. I hope he did, and they do. I’ll never know.

I got a copy of the assessment form in the post today. It contained some inaccurate information. One of the bits is marked as not applicable but I wasn’t asked if it applied to me (and it does).

Rather like the other service user’s work capability assessment.

File this under “you couldn’t make it up.”

Last Wednesday I got the news that I’ve been awarded ESA for two years. I’ve been put straight into the support group. It’s definitely the right decision and now I’ve had a chance to think about things and calm down I’m relieved its sorted and ok with it. But it’s not a comfortable place and if I’m completely honest I felt like I must be much more disabled than I realised.

I wrote more about that, the ESA process and how it relates to me over on Bea Magazine

And then yesterday I got a letter telling me about my DLA entitlement for this year. And all about how DLA is being replaced by PIP. I’ll be called for reassessment for that at some point.

So I just get to the point where I can stop worrying about ESA. And now they want me to worry about my DLA?! Fantastic*

I think you file that under “couldn’t make this shit up.”

*I’m not worrying about DLA because I have an indefinite award and the reassessment process for that category doesn’t even start until 2015 (meaning my ESA will come up for reassessment first most likely) but still….

Bad Mothers United by Kate Long

Feels like ages since I’ve written a book review. It actually isn’t on the grand scheme of things but its certainly been longer than I would like! I have a few coming up in the next week though so that should be good. There’s no real reason for the break other than I’ve not had much time for reading and also I chose to reread some favourite stuff instead of tackling new books.


Simon and Schuster sent me an advance copy of Bad Mothers United by Kate Long. And then I got chatting to Kate on Twitter and she kindly sent me a signed book plate.

This is the sequel to one of Kate’s earlier books, The Bad Mothers Handbook which I also read when it came out several years ago.

Here’s the synopsis:
Before Yummy Mummies and Slummy Mummies, before the Battle Hymn of the Tiger Mother, before we wondered How She Does It, there was The Bad Mother’s Handbook. Hundreds of thousands of readers lived a year in the life of Charlotte, Karen and Nan as they struggled with becoming mothers for the first time. And now they are back. Certainly older, probably not wiser, and definitely as hilariously catastrophic as before. For all those who have asked How to Be a Woman, here is How To Be…A Bad Mother.

Although I have read the prequel to this I was told it can also stand alone as a book. Which I would agree with. I did get a tiny bit confused at one point but that was mostly because I couldn’t figure out if something had happened in the first book (and if so how I’d forgotten it) or if it happened off screen between the two books. Thanks to the power of twitter Kate unconfused me. It happened off screen, in case you’re wondering.

I talk books a lot with various different friends and a few days mentioned this book to one of them. Who said she’d hated The Bad Mothers Handbook. That surprised me because I’d really liked it. She found the characters annoying and wanted to tell Charlotte to grow up she said. I found that interesting because I didn’t find that with The Bad Mothers Handbook but did find that I spent a decent sized chunk of this book wanting to tell Charlotte to grow up and both her and Karen to learn how to communicate properly.

I think when characters annoy you that much it’s a quite a good sign of how realistic and true to life they are. That went down as they book went on and events unfolded. It became more obvious why things were how they were and then it made sense.

This book takes place over a year and each chapter is pretty much a day in a particular month. I quite liked that format. We got a really good snapshot of key events (usually just a day but sometimes a couple) in that month and them we moved on to the next month skipping what could be a few days or a few weeks to get there. Which does mean that some things were building up and then it would skip to the next month and what came of it. It kept the story moving a lot and skipped some of the more obvious and possibly mundane moments like the fight about money I was sure Karen and Charlotte were building up to at some point. There was at least one point by the end that wasn’t resolved that I’d have really wanted dealt with but maybe they’ll be a third book and it’ll be dealt with then. It would make a brilliant plot.

Part way through the book Steve, Charlotte’s Dad and Karen’s ex husband has an accident and becomes disabled in a way that looks at though some degree will be permanent. The difficulties in sourcing the right equipment with all the bureaucracy and delays are shown in a good way and Karen also has to tackle the dreaded DLA form. The way it’s length (circa 39 pages with its own booklet to explain how to do it which if memory serves is almost as long as the form) and the questions are described is brilliant. That part alone could be used to highlight the true difficulties people have with that.

I would hesitate to recommend that however as a bit later in the book Karen discovers that a minor character has been committing benefit fraud. I was a bit angry about that because I’ve had to fight all my life to get all the help I need and claim benefits I’m genuinely entitled too. But the general idea is that we’re all faking to some degree and I worried that would help make reinforce that idea for some readers. But then I calmed down and returned to the book and discovered that actually it was handled brilliantly.

This book was one of those ones that keeps you reading. Not in an edge of my seat I can’t put it down type way but because I’d pick it up and the next thing I’d know is an hour’s gone by and I’ve read way more than I planned. It was a fun enjoyable read but as you can probably tell from my review it provoked some very strong emotions from me so if thats what you want, fantastic, But if a calming read is what you’re after I’d probably skip it.

>Imagine You’re Four

>This post was written by Kaliya Franklin and originally appeared at Benefit Scrounging Scum.  It’s reposted here with permission

Imagine you’re four. You love your parents, your friends, the way the light comes through your curtains early in the morning, twinkling on the walls while you wait in your princess room patiently for mummy and daddy’s wake up time. Your favourite things are pink ballons and fairies, when it’s all a bit confusing around you you know you’re safe as long as you can catch sight of those pink flashes and know mum and dad are close. You love to give cuddles, hugs so tight there’s no room to wiggle and when you get excited you rock back and forth from foot to foot, arms spiralling joyfully.

One day a new clipboard lady comes to see your mum and dad. You see them cry and decide you don’t like this clipboard lady, you wonder where the clipboard lady you remember has gone. Mummy and Daddy are sad so you hug them then fling yourself to the floor and scream so the clipboard lady will go away. It works so next time you decide to scream louder and kick your feet harder to be sure she’ll go before your mum and dad cry.

Next time the clipboard lady comes with lots of other people to take you away. Lots of big words you don’t understand like ‘aggressive’ ‘confrontational’ and ‘care order’ float around the room and you can’t see your pink balloons so scream and scream. Mummy and Daddy cry and tell you to be a good girl, that you’ll love your new home, it’ll be full of your favourite things to do, they’ll come to see you soon.

When you get there it’s all scary and wrong. It smells funny and the light doesn’t wake you up in the mornings anymore. No-one knows you like to be woken up by the light and they wouldn’t care if they did. The days are long, no painting or ponies like you’re used to to fill the time and no-one comes to give you cuddles when you’re sad. You cry alot and have tantrums. You’re used to pink balloons and fairies when you have a tantrum, but without being able to see that you just kick more wildly, especially when the carers come to sit on you and hit you.

You might be only four but you can remember the important things Mummy and Daddy spent 18 years teaching you. You know how to hold out your hand and say ‘NO!’ in a loud voice if someone tries to touch you, to say the police will come to look after you, to call out for your Mummy so she knows to come to you. Mummy and Daddy were so proud of you for being their big girl and learning these skills, you try to remember that as you lie on the floor of your shower, surrounded by grown ups shouting at you, throwing cold water all over you, sitting on you and choking you. You cry and cry for your Mum but it just makes the carers hit you more. Sometimes the nurses come along and you look at them while you’re on the floor, pinned beneath a chair, but then someone puts a blanket over your head so you can’t look at them anymore. The blanket’s brown and scratchy and you cry for your pink balloons while they hit you some more.

You don’t get days out anymore. There used to be a car and Mummy and Daddy took you places with swings and slides. Swings, slides, light through the leaves and being happy slip further and further away until you’re not sure there was ever a world beyond beige walls with no pink to hide in to bear the slaps, pinches and pushdowns that are your new routine. You’re sure you remember your parents though and cry for them every day. You don’t know the reason they can’t come to visit is that now you’re a hospital resident 80 miles away from home and the car had to go because you’re no longer entitled to the mobility component of Disability Living Allowance and the Motability scheme. Mummy and Daddy are getting older and they had to care for you instead of going out to work. You don’t know they’re going cold and hungry now they’re unemployed not carers, you only know that no-one comes to see you except the people who hurt you.

You don’t know someone in the hospital did care. That they reported the abuse you are experiencing repeatedly. To their manager, to their manager’s manager, to the Care Quality Commission. You don’t know because no-one did anything, nothing ever changes now, the torture is your daily routine. You don’t know the word for torture, but you could give a better account of what it means than a prisoner in Guantanamo.

You don’t know that in the world outside your torture chamber that people talk alot about double funding, scroungers and fraud. Of something called a deficit, the need to cut costs and protect the vulnerable. You don’t know that because all the talk is of stamping out fraud and you’re so vulnerable no-one knows you exist.

>Updatey Updateness on the Powerchair Armageddon Situation.

>I heard from the wheelchair engineers first thing this morning.  They’ve made some adjustments my chair and got it working again by bending some frayed wires and reconnecting them (I think) but asked if I wanted the piece properly replacing.  Baring in mind that they said “it could last a week or it could last six months” and the replacement part is much less than anticipated (as its a different part to the worst case scenario part they thought and told me about) I told them to go ahead and replace it.  They’ve also managed to get the freewheel working again – it was just disconnected or had worked I think although how the hell that happened I don’t know.  Possibly it was with all the getting lumped around on freewheel on and off of a ridiculously high taxi that only had a ramp and no tail lift.  And they are going to replace my tyres.

It’s much less than I’d anticipated but it’s still going to be several hundred pounds.  Before any parts have come or been fitted my bill is already over £100.  As the guy said on Monday when he picked it up – it’s much less than a new chair.  Add in the fact I had new batteries about six weeks ago and it’s likely I’ll end up having spent the better part of a grand on that chair this year.  Thank God for DLA! But even that doesn’t go far… the work that’s been done already is more than a weeks worth of my DLA.

Unfortunately wheelchair parts aren’t like car ones where you order them in the morning and get them in the afternoon.  These parts will take a few days to come at minimum, possibly even a week or more.  It depends if the manufacturer has them in stock and I forgot to ask!

Naidex is in a few weeks.  I’m going for two days with several people I “know” through twitter etc and I’m hoping to see a uni friend too.  This year was going to be all about being one of the “normal” there and meeting some friends and giving some hugs.  But my mum is now heavily suggesting that I go play with some powerchairs too… and I must say that is a very tempting idea.

Watch Out Birmingham! The Crips are coming! And this one intends to try ever single powerchair she can.  Don’t say I didn’t warn you…

>My submission to the consultation on DLA reform


I am lifelong disabled. Always have been and always will be.  Specifically I have cerebral palsy (CP) and use a wheelchair 95% of the time.  I’m able to stand and take a couple of steps, enough solely to move between bed, wheelchair, toilet, powerchair etc.  I also have clinical depression and anxiety.  This was not caused by my physical disability but is made much worse by it.  I was diagnosed with this in 2003 and have been on treatment for it almost continually since then.  I have many concerns about DLA reform.
As someone who is lifelong disabled I’ve been in receipt of DLA at the rate of Middle rate care and Higher rate mobility since DLA came into being.  There is no cure for my CP which means I’ll never improve to a state where lower levels or no DLA is needed by myself.  CP being a static condition also means that there is little chance of my condition becoming such I require higher levels of DLA.  As such I have an indefinite award.  That doesn’t mean it’s a permanent award, it just means that they recognise my circumstances are such they need not be reviewed regularly.
I am concerned the greater impact of these proposed changes hasn’t been assessed correctly.  I live in Oxfordshire and in 2007 my support from Social Services was withdrawn as I wasn’t considered to have high enough needs.  Since then the criteria have become even stricter.  My DLA has enabled me to continue living alone.  It means that I can pay for a cleaner to come once a fortnight and mop my floors, change my bed and clean the kitchen/bathroom.  The rest of the time I live in a very messy house I have no choice.  It pays for extra washing because I’m incontinent and also because sometimes my clothes catch on my wheelchair and get dirty quickly (and sometimes for extra clothes because they rip).  It pays for new batteries for my powerchair as I have no other form of out the house independent mobility but don’t qualify for one of the NHS.  For heating as I get cold easily.  Slightly more expensive foods that come in packets I can open without help and things which are low effort to prepare.  If I was to lose my DLA I would have to go back to social services and they would need to find that help for me, something which would likely cost more than the DLA I receive each week.
My family (parents and younger brother and sister) all work full time.  They’d have to find a way to help me out much more than they already do.  I’m not being melodramatic when I say they would likely end up having to do all of the support that DLA allows me to arrange for myself.  Doing that on top of full time work would be very difficult.  My mother runs her own business which would likely suffer if we found ourselves in that situation.  Surely that isn’t good for the economy? 
Then there would be the increased cost to the NHS.  My family wouldn’t want me to feel guilty or like a burden but it’s how I would feel.  I’m 29 and I’m independent, but I’m really scared I’ll lose that.  That’s making my mental health problems worse – I had a panic attack yesterday about the possibility.  If the situation becomes a reality it’s very possible my medications will need to be increased at a higher cost to the NHS.  I’d also no longer be able to afford repairs and maintenance on my powerchair so would have to go back to the NHS for reassessment there.  Parent and other family carers also have a high level of health problems due to their caring responsibilities, again another possibly increasing and likely high cost to the NHS.
Currently I live in a fully adapted flat which I rent from a housing association.  It was designed for a wheelchair user as it was built.  Without my benefits and the support they provide I could face having to give up my flat and move back with my parents.  I’ve never lived in the house they currently live in and it’s not suitable for my needs.  A disabled facilities grant or similar would be needed to adapt it, another cost which DLA helps avoid in my case and I’m sure in many others.
Emma Crees
17th February 2011