Friday, 24 February 2012

Paul's #DLA Story & #PIP Fears

In all the political posturing and chest beating there has been a lot of talk about Disability Living Allowance. Most of it’s ill informed and often misleading. Cabinet members who should know better keep referring to it as a benefit for unemployed disabled people and how it’s rife with fraud (actually 0.5%, much lower that DWP’s own error rate). What DLA actually is, is a benefit that goes some way to covering the additional costs of being disabled and can be claimed, working or not. For a lot of disabled people, DLA is the thing that actually enables them to work. The planned 20% cut when it migrates to Personal Independence Payments (PIP) will mean significant numbers of disabled people losing out and, in some cases, having to give up work. An exceptionally retrogressive step.

I get DLA. I get the middle rate care and higher rate mobility. These help me cope with the additional costs of being disabled and help keep me able to work.

This is quite hard for me to write as it’s going to contain some very personal information. That’s why it’s not written in my real name as I’m not ‘out’ about everything here.

I was born with Spina Bifida, a disability caused by the spine and spinal cord failing to form properly before birth. I’m ‘lucky’, my spinal damage is relatively low down and I didn’t get Hydrocephalous which is a common condition with SB. Despite that, I’m fairly disabled and had to endure a significant amount of surgery to keep me functioning. Forty surgeries in 44 years. One of those operations was to amputate my left leg below the knee due to damage caused as a result of the reduced sensation that SB causes.

So that’s the damage, now for the effects:
·         Walking: I can walk after a fashion but it’s painful, tiring, gets me out of breath and it’s almost impossible to carry anything. Only being able to walk a short distance means I can’t walk to the bus stop or the corner shop. I can do it if I really try, the same way an able bodied person can do a marathon but, like a marathon runner I couldn’t do it two – three times a day every day. Getting the higher rate DLA means I qualify for Motability, a scheme where I give up my mobility component as the payments on a lease for a car. This means I have safe, reliable, accessible transport so I cna get to work, go shopping and even socialise like any non-disabled person. This isn’t about choice, preferring the car over public transport. This is about being able to make the journeys I need to in order to live a ‘normal’ working, productive life. It also means I qualify for a blue badge for parking. For me this is twofold. Firstly it means I can park nearer to my destination, reducing the walking. Secondly, because of my prosthesis I need to be able to open the car door fully to get out. The wider disabled spaces mean I can do that. Sometimes when people have parked too close (but within ‘normal’ parking distances) I’ve had to trust a stranger to move my car enough so I can get in. These are just the problems when I can wear my prosthesis. When I can’t I have to use crutches and things become much much harder. I also have appalling balance and trip and fall frequently.

·         Standing: The same issues that affect my walking also affect my ability to stand. The imbalance in my hips, differing leg length and spinal curve mean that standing gets painful within a minute or two. This makes waiting for public transport excruciating.

·         Damage: One of the lesser known ‘hazards’ of disability is the damage it does to your clothes. The upper edge of my prosthesis wears my trousers through at the knee in three to four months. The limited flexibility of the heel destroys socks and the insoles of shoes. If I don’t get my trousers altered to allow for the differing leg length then the prosthesis heel destroys the hem too. My gait (Trendelneburg for those interested) means I flex shoes to breaking point, scrub the soles as I walk, and catch the toe as I can’t lift my foot as I swing through. This means I get through shoes far faster than someone without my gait.

·         Continence: The big one, something I keep private and try to cover up all the time. The level of damage to my spinal cord left me doubly incontinent. As a result, I had to have a colostomy when I was 7 and an artificial bladder sphincter when I was 25. Two massive operations that damaged my stomach muscles.
When it works, the colostomy is fine. However it’s not always reliable and you never know when it will leak. As a result I have to take a change of clothes, a wash kit and spare bags with me almost everywhere I go. As I said above, carrying stuff is really difficult. This is where the car helps as I can leave this in the car most of the time. It’s normally fairly close to where I am and I can get the bag and sort things out easily. Should I lose my car I’d have to:
o   wait for a bus,
o   get on it without having been able to clean myself up and endure the stares and comments of other passengers,
o   walk home still reeking and in extreme discomfort,
o   get changed,
o   walk back to the bus stop,
o   wait for the bus,
o   Finally arrive back at work.
Assuming a not unusual 30 minute commute, this could take between 1 ½ to 3 hours depending on timing and bus frequency. It also assumes I don’t get thrown off the bus. Having my car means being able to sort things out in 15 to 20 minutes maximum. It means I can go to work knowing I’ll be able to put in a full day.
While the bladder sphincter gives me improved urinary continence, it’s only about 70-80% effective. Coughing, sneezing, lifting and laughing all make it fail. As a result I wear a leg bag. Like the colostomy, this can and does leak. These failures are unpredictable and usually involve a change of clothes. As above, the support the DLA gives me enables me to live a more productive life.
These leaks can happen at home too, often in bed which means trying to strip the bed in the middle of the night and ending up sleeping on a towel as I can’t make the bed again. If I bag laundry up and drag it, I can get it in the machine but hanging it out, bringing it in; folding/ironing it is extremely hard work due to my balance and standing problems. If I’m unable to wear my prosthesis (which happens fairly often) then this is effectively impossible. I pay someone to help me with this and remake the bed or I’d not get it done. As you don’t want soiled clothes hanging around I also do far more loads in the machine than average which costs more and also shortens the life of the clothes. Yet more disability specific cost.
·           Energy: All of the above takes an estimated 150% of the energy it would take a non disabled person. I can cook from scratch but don’t always have the energy/balance to do so safely so I have a stock of ready meals. These are more expensive than using raw ingredients which is my preference when I don’t have to preserve my energy for going to work.
This is just a taste of the key issues in my life and the stuff I have to manage to keep as functional and productive as possible. The support that DLA and associated services provide are cornerstones of enabling me to work. If the proposed PIP test goes through unchanged, there’s a chance I’d lose it all. This would severely hamper my ability to work, exactly the opposite of the Government’s stated aim.
There’s also been a lot of talk about disabled people being awarded DLA for life and how there should be regular medicals to check if they are getting better. My award was for life as SB doesn’t get better. It only gets worse as your body ages and the wonky spine and uneven muscles take more and more toll on your joints. This was before I became an amputee. Now, there’s even less chance of me getting ‘better’ as, as far as I know, there’s no record of limbs regenerating in humans. The politicians argue that reassessing me would tell me I’ve not been dumped on a shelf and been told there’s things I can’t do. I know that anyway. I work, I’ve studied, I’m involved with my community. I do what I can within my limitations and DLA is one of the things that enables that.

Those making policy have a slim grip on the reality of the issues involved and they took a cavalier approach to the consultation on the changes proposed. They ignored all the responses from disabled people’s organisations and only took a cursory look at responses from individuals. The DPO’s responses were measured, evidence and experience based. We know the system isn’t perfect, we know it needs some reform, but it needs to be reasonable, evidence based and not set the lives of disabled people back 30 years or more.

This has been a hard post to write and I’m sure I’ve forgotten issues that I just get on with everyday that take longer or cost me more. When you see someone talking about PIP or DLA, remember it’s not just about the obvious impairments. It’s about the hidden ones and all the knock on issues that all these impairments bring.


Alan Bruce said...

Paul, I can relate to what your saying as I guess a lot of other will to.
The best I can do for you is wish you all the best..

Hàìghlèàgh Winslade said...

I can also relate to what you have said Paul. I have a right hemiplegia, a dysplastic hip and arthritis in both hips. My neurological disability means that I suffer from fatigue and 2 and a half years ago my car was rear ended by a young driver and the ambulance people ignored the problems with my hips and left me on a back board for and hour and a half and consequently I can now add spinal problems to my disability. I am presently studying for a 2nd BA degree in History and Theology my first is in Archaeology. I used to be an FE lecturer and I am planning to undertake postgraduate study so that I can return to work lecturing in the HE sector. I would be lost without my Motability car. Only yesterday I visited the British Library in London to undertake research. I had to go with a friend to help me on public transport everything was ok going as we could use lifts at Waterloo and Euston but returning had to change which required going down an escalator the London Transport employee whom I asked was most helpful I held onto him whilst my friend stood in front however I still nearly lost my footing on the escalator. I also struggled to get on and off the trains. Without a car I would be stuck at home and couldn't return to work. These proposed changes to entitlement to mobility component are madness as they will result in most people with disabilities who do work having to give it up due to the loss of their Motability car it is definitely a backward move as far as encouraging people with disabilities to engage in the workplace and wider society in general goes.

Anonymous said...

Well done Paul for writing this post. I can tell it wasn't easy for you. Your post is an articulate and dignified response to the realities we face and too often overlooked by policy makers. I congratulate your courage in writing your post and wish you all the very best. I recently read that the PIP won't be rolled out to existing claimants for some time yet. A concession won by Hse of Lords is too trial it on new claimants and co produce the design of the assessment with disabled people. To avoid another WCA disaster. I hope this news Is true, If it is then it's because of the efforts made by disability campaigns coming together to fight for our rights. All the best

Anonymous said...

Great post. For many of us our cars are our legs as we cannot go on buses or jog or walk that far - When (not if as we know the disabld mean nothing to scameron) WHEN they take away our DLA/PIP and then chuck us on to JSA or ESA we will be sanctioned for rubbish reasons and end up with nothing - I mean WHOP can live for Three bloody years on no money?????? I have MS and I suffer dreadfully from fatigue and pain when standing/walking or even sitting and I feel like the condems are going to be the reason of my life ebnding.,,,

Anonymous said...

sorry for typos

Anonymous said...

I can totally relate to what you have said and i take my hat off to you for working. I too have a colostomy that malfunctions on a daily basis because of this and other incontinence issues i am often to afraid and embarressed to go out. When my bag isnt exploding and i mean like a fountain it is leaking and releasing gas with lots of noise. I also have lots of physical disabilities but i have good and bad days. I found when i originally applied i was turned down as i did not fit into the boxes that the form sets out. Luckily on appeal i came up against a Doctor thba knew about my unusual condition,however i had to battle for months to get it. Now i have received the form this morning saying i have to go through it all again 2 and half years on. i wish you luck i am sure we will need it as we have the degregation of going through it all again, however how humiliating it is for us.

Anonymous said...

Thank you Paul for writing this difficult, brave post. You have summed up the fears so many DLA claimants feel - i.e am I ill enough in the new rules to get DLA or PIP?
I have MS and it won't get better, my continence problems have been getting progressively worse, my walking is rubbish (your example of walking to the shops being like a marathon for an able bodied person is so true!)and as a result I am now no longer working. I rely on my partner to drive me so I can get out of the house. I hate having to fill in how horrid my everyday life is on the DLA form but realise if I don't they won't give me the full allowance when I next reapply.
It's like constantly agreeing that a stick can beat you for being disabled.

Anonymous said...

Nice post Paul easily understood
The government are just going to increase the pressure on the sick and disabled until they stop claiming benefits

They will have us all going through hoops year in year out until we die that's a fact

I myself have been a victim of over 30 years by the DWP and all it's done to my health over that time is to make my illnesses worse but also to make me go down in the last 5 years with mental disorders

I thought i could hold out and keep sane but with regret i have failed in the long never ending battles with the DWP over the 30 plus years time frame

My doctors say i have done well to keep alive but the struggle to just even eat or drink is a daily nightmare

I have to be very focused when i go out in case i just run in front of a car madness i know but when your mind is unbalanced anything can happen at any time which will be completely out of your control hence i don't go out that often but stay in that way i know that everyone is safe

David Cameron will fall down at some point we have to believe in that just as we have seen in the middle east and north Africa

The prime minister wont have necessarily blood on his hands but he sure will have death and we must all remember that and at in any future inquiry like The Leveson Inquiry that those that have suffered and have lived in fear come forward so that he can and his departments be tried for crimes against humanity

Catel said...

Im 47, Bronchitis turned to double pneumonia, into TB, broke ribs many times coughing. Pain clinic giving monthly epidurals decided to operate and kill the nerve unfortunately they pierced my lung. Now live in constant pain, on 3 forms of morphine, and 2 different anti depressants.

I was advised to apply for some benefits. I have worked every day of my life from 16 thru to 37. Paid tax etc.

I was told I qualified for Disability, DLA, upper level mobility (I am in constant pain from broken ribs and failed operation, along with pleurisy and COPD, and pain 24/7.

I was so relieved, my bills got sorted out slowly, I was able to get a motability car, and get out once a week for a few hours drive.

I dont leave home ever, once a week for shopping and a 30 minute drive. I have oxygen.

Im told I will lose all this from PiP, lose my benefits and my life, my car, my support, my housing benefit, everything . Please, stop this PiP to give tax breaks to rich people. Im a real person.

Englishrose said...

I have just read your experiences and as a woman born with spina bifida I very much understand the difficulties you face every day (and night). Under DLA I was on high rate for both components and under pip was only awarded standard. The whole process was degrading and the assessment was an interrogation and my answers twisted as was proven when I received my copy, where there were blatant lies about what I had said, incorrect information about my disability considering she was from the nursing profession and statements that had no relation to me, which made me wonder if she had confused me with another person. I have been to the tribunal and won enhanced on both but now worried that I may have to find the strength to fight DWP if they disagree. I have felt emotionally and mentally exhausted but at the same time very angry and frustrated. I think the worst part of it all is the isolation. I did contact disability rights organisation but they would not enter into discussion and referred me to their booklet which I had to pay for. So my question is how do we stop looking as though we are complacent. How do we get all the individual voices together to make it loud enough so that it isn't just heard but is listened to. If I knew where to start I would start taking the steps needed because it is so far past the time when we should have been heard saying 'stop, no more. I don't know if you will see this, but I do hope so and that positive steps can begin