Success!

Today was my re-assessment at wheelchair services, a day I had both been dreading and looking forward to. Dreading at the prospect of being rejected and starting the process all over again, and excited because maybe I would finally be getting some help towards the wheelchair of my dreams!

To be honest, I'm surprised I was coherent at all during the assessment, as I was so sleep deprived from being up all night imagining all kinds of scenarios, that I was basically a zombie. Not that I'm not normally like a zombie, but this time I had the mental capacity as well as the staggering coordination of one.



Fuelled by tea, we arrive at the hospital, prepared to do battle! After psyching myself up for ages, the assessment turned out to be a pretty straight forward affair - this time a wheelchair technician was present, and I was much better at being confident about what I needed and what I didn't want. After a discussion of the different options available and my hip width being measured, I tried out their Invacare XLT.

Considered lighter than my current chair, I still felt it wasn't up to the standard of the Quickie Helium and didn't suit my needs, so I told them I would most likely want to go with the voucher scheme. Next came the "BINGO!" moment, when the technician said that would be fine, and that to ring them when I had found a suitable chair and had a prescription for me, and that they would pay some of the costs.

YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY!

THE QUICKIE IS WITHIN MY REACH!

I don't think I actually absorbed this good news much at the time, but after regular top ups of caffeine, it is sinking in, haha. Good news indeed!
The next step will be to get in contact with the Quickie guy and settle the final finishing touches of the chair, and sort out how to pay the rest of the costs off. :D

Like a Chicken

I am so, so soooooooo sore today. Yesterday I went to the Rehab Centre (NOT the drug kind!) to discuss the next stage of the Baclofen Pump. Before the appointment I didn't have a clue what it would be about, as the letter wasn't very specific, so when I turned up and it was actually the pre-trial assessment I was pleased and surprised at the same time.

And then mortified.

You see, a lot of cripple consultant appointments involve inspections of the legs and the muscles, which means that they kind of need to get passed inconvenient things like Jean legs.

I had not shaved my legs.

You'd think by now I would be prepared for this kind of thing, and yeah, sometimes I have no shame and don't care, but this was not one of those days. "Oh no, I haven't shaved my legs!" says I, to which the Physiotherapist present replies "Don't worry, neither have I!"
Much comforted, the pre-assessment began. Basically, so during the trail they can tell how much the Baclofen is having effect, they need something to compare it to, so they have to measure muscle tone and spasticity, and how flexible my limbs are.

This means stretching my legs in a wide variety of lovely ways. Think like when you get a chicken and pull it's legs apart to stuff it. Except the chicken is me, and the stuffer three people holding my legs down.



Anyways, after this lovely experience they went through what the aims of the Baclofen therapy, with three aims. As well as this I am being put forward for electric shock treatment, where they sent electric shocks through your limbs in the hopes of lifting the foot up more. I last had thus done years ago when I was 16, and apparently it has improved since then!

To round up this post, the next thing I should hear is when the date of the actual trial is, which depends when the Neurosurgeon is free, so when I know I will post it here.

The Holy Grail of Wheelchairs

This is my Holy Grail of wheelchairs:



The Quickie Helium. Look at it, just look at it. What a sexy beast of a chair. Oh. My. God.

And it is finally, FINALLY within my grasp! Yes, that's right, I'm taking on the powers that be - Wheelchair Services.

Last time I saw them, they point blank refused to assess me as a) I was a part time walker, and b) I had my own (albeit shoddy) chair. At the time my mum quizzed them asking what if I had come in on crutches? Oh, we can't assess you if you can walk. But then again, you already have a chair, and we'd just give you that one you've got so we can't assess you anyway.

What was I meant to do? Come in on a stretcher?!

But this time I am armed and ready, oh yes. You see, it is fairly obvious to anyone that I need a decent chair - my current one is like a tank, and is wrecking my arms from using it everyday, and weighs about 20kg. My Neurologist has written a letter for me explaining that I DO need a chair, and to top it off, I have been fitted for a Quickie Helium by the nice and knowledgeable guy at my local Wheelchair supplier.

I got to try the Quickie out and it is a DREAM. It only weighs 6kg, I can actually lift it with one arm, and I am pretty speedy on it! I almost cried when the demo session was over.

So, come April, I will have my Neurologist's letter and my wheelchair prescription, and I will not take No for an answer!

The Neurosurgeon Appointment

Right, it's been a bit hectic lately, so I finally have time to update on what has been going on!

Last month in February I went to see the Neurosurgeon who would be doing the procedure. She was very nice and straightforward, and had an example of the pump for me to look at and hold, to get an idea of what potentially could be going inside me!

So here it is:





It was a lot bigger than I thought it would be, about the size of a hockey disc, and weighing one to two pounds. That did not put me off though, I guess I will just have to make sure I don't get too skinny or it will stick out a mile!

The Neurosurgeon explained to me that because I was what they called a "walker" (even though that is only something like 5% of the time) I would probably feel the weight when I tottered around, but when in my wheelchair it wouldn't be an issue.
The main issue is getting the right dosage of Baclofen so that I still maintain some tone in my legs (the thing that helps me stand up), if at all possible, which is why I will need a week in hospital having the drug pumped into my spinal fluid via a tube, before getting the pump put in.

The thing that got me down a bit, and surprised me, was the potential waiting time between the testing stage and (if successful) actual implantation could be up to a year, as they have to apply for funding to do the procedure, as it an expensive one.

Gaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.

Well, at least it is getting done and the ball is moving. She suggested going back onto oral baclofen in the meantime, and when I pointed out that I would drunk 99% of the time, she said after a couple of months that could wear off.

TWO MONTHS??

I can't be basically drunk and out of my skull for two months! Though I'm sure some people would love that, I have Uni work, three Guinea Gigs, and some semblance of a social life to hold on to.

So, that's all for now!

The Guardian's Live Q&A with Maria Miller

So, there has just been a live Q&A on the Guardian's website about the DLA reform. Not many questions were answered, but here are her responses:

"I'm sure many of you know a lot about DLA but for those of you who might be newer to it -
It was first launched in 1992 and has never been substantially updated since.
There have been enormous strides made in legislation which support disabled people, headway made in people's attitudes towards disabled people and many new and different ways that the State supports disabled people, for instance through things like aids and adaptations which now account for more than £200 million. All of this needs to be better taken into account in the way this important disability benefit works.

The new Personal Independence Payment gives us the opportunity to bring DLA into the 21st century."


"@diana13 and others have asked what first hand experience I have of disability issues - my mother is a disabled person and lives with me and I therefore have some insight into the very real challenges that both disabled people and their carers face on a day to day basis.
I have spent time both meeting disabled people and their organisations to make sure I hear directly from them the priorities that they feel the government needs to tackle."


"@MindYerBeak and others have asked whether pensioners will be reassessed. That's a straightforward one - at the moment the changes we are looking at apply to people of working age (16-64) so pensioners aren't affected - the reforms won't affect Attendance Allowance."


"Re Atos - lots of you are asking about whether Atos will be involved in any new assessment. We haven't made any decisions on who will carry out the assessment. We want the best people for the job and we are looking forward to people's responses through the consultation on how best to carry out the new assessment process."


"@Rhydian - I'll pick directly up on your post requesting more evidence for the need to reform. The Government's research on DLA is generally commissioned from external academic and independent researchers and this is what was used as evidence in the consultation.
DLA was first brought into being in 1992 and since that time has not been substantially reformed.
There is no inbuilt system of review, leaving people with short term conditions treated the same as people with long term conditions.
The assessment process is unwieldy, requiring self assessment - with 50% of people receiving DLA never being required to submit any independent evidence of their need.
Significant numbers of people have had no contact with the Department since their awards were made almost 20 years ago and we have no way of knowing if their need of support has increased or not.
All of this points to a benefit that is in need of updating to make it more transparent, consistent and fair."


"Lots of people have raised the issue of support for care home residents. Let's be clear, the Government is 100% committed to supporting disabled people, whether they live in care homes or family homes - more than £40 billion a year is spent to promote disabled people's independence through care and the benefits system. But we can't have money being used to fund the same thing twice.
Local authorities and care homes have clear obligations to provide transport for care home residents and care home residents also receive DLA mobility to cover their extra transport costs. Our proposal is to remove any overlap to make sure that care home residents still get the transport they need and that public money is used most effectively. What's clear to me is that even now the system isn't really working for many people.
A recent report called Don't Limit Mobility said that care home provision of transport is patchy and there is even evidence of people being charged for what should be freely available. Lots in the report was anecdotal evidence of how the current system doesn't work well for care home residents who do have very different mobility needs. What we are doing is looking at how we can make sure the system works better in the future, not only removing any overlap of spending but also ensuring that there is clarity for the future."


"@cellarman - you asked about people with fluctuating conditions who may be able to meet the conditions as fit to work one day but not on another. Just to be clear, Personal Independence Payment will be paid to people in and out of work as DLA is now so we won't be assessing people on the basis of whether they can work or not.
Assessing fluctuating conditions accurately and fairly is critical and we will be looking at responses to the consultation for people's thoughts on this. Just a reminder, the consultation is open until Monday Feb 14th."


"My time slot from the Guardian is running out fast. Can I thank everybody who has taken the time to contribute - every posting has been read and will feed in to our consultation. Hope I can do this again soon."


"@ LynnHarrison
You and others are concerned about disabled people being portrayed as dishonest and even fraudulent.
I share your concern. Cases of fraud bring the benefit system into disrepute and this is bad for everyone. People with legitimate claims need a benefit system that has robust assessment - treating people fairly and putting integrity back into the support that's available"


Quite a long post there, but I hope that helps people who don't want to trawl through all the comments. I have highlighted bits that I thought might be of interest to people, but if anyone wants anything else highlighting, just let me know.

Manchester and News

I have finally got a letter telling me when my appointment to see the Neurosurgeon is! I think it is just going to a consultation, and not the actual testing, but still, progress! So that will be in February next year, so hopefully the ball will start to roll quickly after that.

In other news, I went to Manchester yesterday to hang out with a friend. It was a very fun day, and to sum it up, Manchester gets a seal of approval for wheelchair friendliness! There was one "ah crap" moment, when we got to Weatherspoons, as we were confronted with steps leading up to the door. My friend went in to ask if there was a wheelchair accessible entry, and got quite confused as she saw a disabled toilet!

In the end it was all good, and there was an entrance around the back from another street.

So German Market brandy punch + relatively flat streets + bonding over nom noms = good times!

Update

So I had my 6 monthly visit to my neurologist, just to check up on things and to make sure we both knew what was going on (I am losing count on the different doctors I have seen over the last 6 months!). He said he would check that my referral to be admitted to hospital for dosage testing hadn't been lost in the hospital system, and to try and hurry it up if possible.

He was also very surprised that the wheelchair services* said that they couldn't assess me for a wheelchair because they thought I didn't need one! He said "But...you DO need a wheelchair?!" *confused look*
He said he would right a strong supporting letter to wheelchair services for me, so hopefully that might sort things out.

In other news, final year at Uni is MANIC. The good news is that I have now moved into a new flat, with NO steps down to the bathroom! The bedroom is massive as well, and there is somewhere to eat! We do not have a sofa any more though...

*I will make a post of my experience with wheelchair services another time, but needless to say, it was not forthcoming.