Tuesday, 17 January 2012

My Lords, Imagine For A Moment...

This evening, the House of Lords will continue their review of the Welfare Reform Bill, today focussing on the proposed changes to Disability Living Allowance.  The concerns of many disabled recipients of this vital benefit have been discussed in many forms, and will continue to be discussed long after the Lords have finished their debate today.

This blog, however, is a personal message to those Lords who will be in the Chamber this evening.  A plea, if you will.

My Lords,

You have heard from many different quarters the various opinions concerning the Welfare Reform Bill, and today, specifically, the proposed changes to Disability Living Allowance.

I am a current recipient of Disability Living Allowance.  As I have mentioned in my other Blogs here (see below), DLA is absolutely vital to me maintaining an independent life.

The purpose of this, however, is to ask you, just for a moment, to imagine yourself in a situation such as mine.  Imagine yourself in a day in my shoes...

Imagine waking up at 8am, your alarm clock blaring as you struggle to turn over and hit the snooze button.  This is the fourth or fifth time you've woken during the night, mostly because you're unable to turn over or because of the absolute agony you've had during the night.

As you turn to disable the alarm, your legs and back surge with the first shot of pain of the day.  These shots will continue, unrelenting, for the rest of the day.

Taking your time – mainly to ease the pain as much as you can – you pull yourself upright and swing your legs over the edge of the bed, biting your lip to stop screaming from the pain as your knees bend awkwardly.  Your head spins – dizziness is a constant friend to you – and you settle yourself as much as you can.  Your crutches are next to your bed, within reach as you always leave them, so slowly you lean forward and grab them.

It's 8.15am now – and you're still not out of bed.  Your wife (or husband or carer, delete as applicable) is by now around to you, helping you to stand up extremely slowly.  She's seen you at your absolute worst, and is there every single day, by your side.  Your rock.  You move your crutches in place, and slowly begin to move forward.  The door is opened for you, and you head to the bathroom.

Thankfully you've had the bathroom modified – thanks to the local Occupational Health who have assisted because you are a recipient of DLA – so you're able to use the railings to sit yourself down slowly.  Unfortunately, due to the myriad of drugs you've needed to take to deal with your pain, swelling and so on and so forth, you've developed Irritable Bowel Syndrome, so bowel movements this morning are more painful than usual.

Just another thing you have to deal with today.  And it's only 8.30am now.

In time, you get back into the bedroom, and your wife helps you get dressed.  You cannot reach down to put your socks on, so your wife does that for you.  For a moment you dwell on this fact, wishing that you were able to do it yourself without the excruciating pain that would be involved.  She helps you with your trousers, but you're lucky enough to be able to put your top on that had been lovingly put out for you.

Breakfast is next, which is prepared for you.  A simple meal, cereal and a cup of tea.  Your wife brings it to you, along with several tablets, your first medication of the day.  You already wear a painkilling patch which lasts for a week, but there are other painkillers in this handful, as well as anti-inflammatories and others to help with your bowels.  In total, you will take 20 tablets with your meals today.

As you sit eating your morning meal, you can feel your legs and back tighten, the pain increasing with every minute.  Moving a little can ease this, but for a moment and nothing more.  Of course, moving in itself is painful so you have to find a balance between moving and staying still.  It will be the battle of the day, as it is every day.

But you have a meeting with your Doctor later that morning.  Getting ready for this means getting up and changed – you need help at every stage of this – and then you leave the house to go to your Doctor.  This is one of the scariest things for you – going out is frightening, thanks to all the falls you've had over the years, knowing that one fall could injure you even more than you already are.

As you're just going a very short distance you use your crutches – you have a wheelchair for anything other than short distances – and you attend the Doctor's with little problem.  Thankfully, the car is a Motability vehicle, paid for from your DLA and means that you are able to get out and about with relative ease.

Without it, you wouldn't be able to go anywhere.

The Doctor is concerned about you as always, realising you're struggling on a daily basis.  He makes appointments to see Consultants, with the hope of somehow improving the quality of life.  You leave with a little more hope, but not much – you've heard it all before.

You get home at mid-afternoon, tired from going out.  Just that small journey is exhausting, so you go and take a quick nap after you've been helped to change.  The short sleep is fitful, unable to get comfortable and waking every few minutes in pain.  You eventually give up, and with help get up, heading to the bathroom again before trying to get comfortable again.  You have a mid-afternoon meal – a sandwich, despite your appetite being very low.  You need to eat though to keep up the regiment of medication going.

You spend the afternoon responding to correspondence – both letters and emails – and are able to break up the time by moving between your sofa and the desk where you computer is at.  You need to move every quarter of an hour or so, as the pain builds up.  At one stage you're in tears because of the pain in your legs, your wife comes and hugs you, comforting you until the pain subsides a little.

Your wife prepares you a wonderful meal for evening dinner, your favourite, and in the evening you both decide to watch a movie as you are both keen movie fans.  You treat yourself to a little popcorn.  Sadly, you have to pause the movie several times, the need for movement and bathroom breaks a usual part of an otherwise lovely evening for you both.

By 8pm, you're absolutely exhausted, as is your wife who has been caring diligently all day.  You decide to have a shower before you retire.  Your pain-killing patch has been on for its full 7 days so you replace it before getting into the shower.  You can only stand in there for a minute or two though, holding tightly onto the bar that has been installed, before you're in agony again and, with help, retire to dry and go to bed.

It's 8.30pm now.  You've been awake just over 12 hours.  It will take you several hours to get to sleep, the struggle to get comfortable a nightly battle.  You don't toss and turn, you're not able to.  In fact, turning is a laborious manoeuvre and probably the most painful thing to do.  You have no choice but to try though, and finally, thankfully, sleep takes you.  At least for a while.

My Lords, imagine if that was your day.  Imagine the stress that a day such as this would give you.  Then, for a moment, I'd like you to imagine adding the worry of losing a benefit you rely on, as many Disability Living Allowance recipients do.  Imagine the worry of not knowing what's going to happen to your vehicle – that you absolutely rely on.  Imagine how scared you would be.

That, my Lords, is where we are.  Right now.

My Lords, we're not saying that DLA doesn't need reforming.  It does.  What we are saying is, please, pause for a moment.  DLA gives many people, myself included, the chance to live a somewhat independent life.

It is absolutely vital.

When you vote today on the Amendments before you, imagine yourself in our position for a moment.  Imagine the fear we have, on top of the pain and the uncertainty that comes with living with a disability.

Please, let us have our pause.  Let this be discussed, properly, carefully.


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