The welfare state: If Hawking can work…

English: NASA StarChild image of Stephen Hawking.
English: NASA StarChild image of Stephen Hawking. (Photo credit: Wikipedia)

Last year a majority in the British Medical Association have come out in support of disabled people, declaring the Work Capability Assessment (WCA) unfit for purpose. Additionally, after many months and much campaigning by disabled people, ATOS Origin, The French IT company given the contract to oversee self assessments and carry out face-to-face assessments, have been forced by the Department for Work and Pensions to retrain their staff. This is even after previous insistence that everything was fine and ATOS would not be fined, despite  appeals overturning the previous decision that the person concerned was fit enough to work costing £66 MILLION in 2012-13 alone!! A report published by a coalition of more than 90 Disabled People Organisations and Charities in 2012 produced a damning verdict as to the impact of assessments and cuts on disabled people. In particular:

  • Nearly 9 in 10 (87 per cent) welfare advisors said the constant re-assessments for benefits are damaging people’s health
  • 9 in 10 (90 per cent) welfare advisors said that too many disabled people are slipping through the net and are left without adequate support by the welfare system.

Mencap have also raised concerns over whether there is enough understanding of the way learning difficulties affect people, and how this impacts on a person’s ability to work.

Despite all this, GP Philip Peverley has recently claimed that: “I had considered, at one point, putting,  up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.” To those who are entirely unaffected by the benefit cuts, and have no reason to disbelieve the skewed headlines produced by some sections of the media, this kind of statement may well make sense, and is the kind of logic behind the Goverment’s portrayal of benefit claimants as ‘scroungers’. However, to think this, and indeed, to declare it publicly is to completely gloss over a whole host of issues which he may well know nothing about which prevent disabled people accessing work, and a host of medical issues which make work difficult, some of which I have described below, This is to say nothing of possible discrimination, access barriers including need for specialist equipment not covered by Access to Work Grant, difficulties getting to and from work, and lack of transport to get there, extra costs, pain, fatigue… the list goes on.

I admit there may be some truth in some of what he says including that some people well enough to work to everything to prove they are too ill to do so. If there weren’t there would be no need for reforms, however, the levels of fraud are not nearly as high as the Government would have you believe. However, according to the article, “A poll of 4,000 family doctors by the Department for Work and Pensions in May showed three quarters feel that – even when there is no medical need – they are obliged to issue sick notes to patients”. This may well be true, and it is not the first time I have heard a GP asking that they could opt out of assessing patients fitness for work. If not they, then who? GP’s position as ‘Gatekeepers’ to NHS services makes them ideally placed to have overview of the main issues affecting a patient and the clinics they see and services they receive. I have already established that ATOS are in no position to do this on GP’s behalf, despite Peverley’s claim that “ATOS nearly always gets it right”!! He has also failed to acknowledge that Hawking is able to to pay for costs associated with his disability in ways that the majority of disabled people can only dream of. Money means access to better care, better food, higher quality housing and a better quality of life in general. This will have a positive affect on his impairment, despite its severity. He is so intelligent he can work using his voice only and has all the support he needs, something very few disabled people can say. Journalist Sonia Poulton‘s response to this article was to post a tweet containing Peverely’s reg. number for the General Medical Council for anyone who wished to complain!!

The last time I worked was in 2004. I did the kind of office job referred to in the article. I did full time (8.30-5.00) work for 6 weeks to cover sick leave, in the summer holidays while I was a student. For two weeks, I walked to work while my parents were on holiday, or I got a lift from colleges if they passed me on the way to work. Otherwise, my Mum drove me there and back. I don’t remember if there were steps in front of the building or not. I do remember that there was a lift. This was in the days when I was still on my feet, without a walking aid, or a wheelchair, except I used a scooter in term time to negotiate university grounds. I was also on minimal medication, and no prescribed painkillers. This was the year before my diagnosis of Chron’s disease too. This is all significant, because by the afternoon, I would have severe shooting pains from my hips to tips of my toes, and often stomach cramps too. I would be so tired I would have uncontrollable giggles, and my speech would be slurred. How very professional. I struggled to concentrate to do meaningful work, and I made mistakes. I was never disciplined over it though. Clearly not capable of office work, despite this doctors claims.

What about if I were to attempt this work today? Well, before I got to work I would have to be up very early because it would take me a long time to get ready. If my carer phoned in sick, the office may not be able to cover it, as I am often the first name on the rota, and not every one can work that early. Even with care, I often have to go back to bed to sleep off the effects of a disturbed night, or the effort of getting up and organised. If I did not do this, I would be asleep at my desk. This is often the case even try to write blog posts, which is why there was no post on Wednesday this week.

What about getting to the office? I am unable to drive because the part of my brain responsible for spatial awareness is too damaged, and reaction times were so erratic in the simulator during my driving assessment the Occupational Therapist advised that I would need to use hand controls to be able to drive but that I lacked the necessary co-ordination. Getting the bus is also out of the question, as I do not have the strength to propel my annual wheelchair on my own, and my electric wheelchair is too big. Taxi it is then. However, most taxis are the wrong size or shape to fit my wheelchair, and those it will fit are in demand. Even if I can get one, there is often no space between my head and the roof off the car, causing me a head injury if it crashed. I have been in town before, and even though I have pre-booked a taxi to take me home, none will turn up. I would need a motability van, but as I can’t drive myself, I would need a PA to drive one for me, even though funding is being squeezed in every budget including Access to Work, and the list of things which can be funded is now minimal. Add in cuts to social care and the disappearance of the Independent Living Fund in 2015 and this is an impossibility. (To read about the impact of these cuts on another disabled person, click here to read an excellent piece for the Indy’s Comment is Free by Jess Thom).

Assuming I could get there, I would not consistently be able to do any work for so many reasons… My pain killing medication exhausts me, making my speech slurred, and even then it does not take away all of the pain, and I often squirm in my wheelchair due to back pain, and other pain I cannot write about in a public forum. Then you add in the times my ileostomy bag bursts (which I cannot change by myself, and the bladder spasms causing me to wet myself. Have I forgotten anything? The last time I filled in a WCA form there were at least 3 or four extra pages of close written small script explaining my disabilities and the effect these have on my day to day life, including all the equipment I need to help me. Still think I can work?

Of course, I would love to be able to work, but at the moment is something I can only dream of. One of the reasons for starting this blog was to give another purpose to my day. I have been surprised and delighted to the response from my first post for a few weeks, about childhood dreams. Before you lose the will to live, I shall go off and take my medication, as the dispenser fondly known as the UFO is making itself heard! Until next week…

‘Dave’s’ speech (2)

This is the second of two posts on two David Cameron’s Closing speech to the Consevative Party Conference delegates. The first is concerned with Cameron’s take the Paralympics, and people’s view of disability. In his speech Cameron also talked about something called “Compassionate Conservatism” and said that they were providing for vulnerable people.

Sorry ‘Dave’ but you don’t have a clue mate!

What does ‘Compassionate’ Conservatism actually mean? Is it just to make them sound better? From where I’m sitting there’s not a lot of compassion. Yes, Dave, I understand that you think you understand, but having one disabled child does not mean you understand what it’s like to live day my day with a long-term illness or disability. I’ve had a disability for almost 30 years, and been ill for at least the last 10, and there’s so much I don’t yet know about disability. For example, I couldn’t pretend to know what it’s like to live with even a moderate learning disability. Also, when Ivan was alive, the Cameron’s won’t have been at the mercy of the complexities of the welfare state. Most problems are easier if you have money to chuck to chuck at it, including the provision of high quality specialist care.

As far as I can tell, the conservatives have this idea in their heads that they are providing for those in ‘genuine need’ and so being compassionate, while encouraging everyone else, to get a job, which they think is best, as work, rather than benefits pay, and so they are being compassionate. The reality is that it is not just the Ivan’s of this world who are unable to work. It is quite right that people who have his level of disability should be given the very best, but can the country afford it? There is a complex mixture of people who are unable to work, but the benefits system is too inflexible to recognise this. As a dear friend said recently, it is impossible to compare two people, even those with the ‘same’ condition/impairment, or a ‘similar’ level of disability, but for the purposes of doling out finite resources, there needs to be a way found of comparing people with money being distributed as fairly as possible. Yes, an absolute minefield!

Even where one does qualify for what is called the ‘support’ group of Employment and Support Allowance (ESA) as I do, the form is a peculiarity in itself, as it is designed to trip people up, and the system is designed to recognise specific words and phrases as being associate with corresponding levels of need, and so it is best for the claimant if they fill in the form with someone beside them who knows what these specific words and phrases are and who can arrange the wording accordingly. I have been filling in forms for government since I was 18, and even with two degrees, I required the help of a friend who hold a senior position at a local social enterprise to be able to fill the form in correctly. My friend asked me for absolutely minute detail. For example, where was the pain, how long does it last, how often does it occur, how severe is it. which tablets help, and how much of the pain do the tablets take away. What are the side effects I suffer from of the pain relieving medication, and how does one medicine interact with the other. We had to do this for every place I have pain. When writing about how the fatigue affects me day to day we had to write in similar detail, for example, how often does it confine me to bed; how often does it limit my level of activity, and in what way? What impact did this have on my mental wellbeing. It was the same with the problems with my ileostomy bag, other medical ailments, how my cerebral palsy affects my mobility, dexterity, how my independence has been gradually chipped away… and the rest! We ended up with at least three double-sided blank pages of closely written extra information. The whole exercise took the best part of three hours, and left me utterly exhausted. When my friend left, I took to my bed for the rest of the day!

The form also required me to list every professional I see, and at the time I think I had a list of about fourteen! Every time I lose one, there is usually another to replace them! Not only this, but all the names and address and phone numbers of each of the team of people. It was the same for each subsequent question; so much was required. Even then, I was at the mercy of someone reading all this information who was able to process it all and understand the impact of everything on my daily life, and which group this placed me in. Obviously as a Christian, I prayed before the form was posted that such a person who be the one to assess my level of need. You might think that all this effort may entitle me to support for at least a year or two…. wrong!!

Compassion?! What Compassion?

Every time the benefits system is altered I am at its mercy. There are new forms to fill in, new benchmarks for the different levels of need, and fresh understanding required to fill in each form. To be constantly required to use my precious limited energy on all of this is, for me, a hallmark of a lack of compassion, and also, a pointless exercise, as it means telling the Job centre or Department for Work and Pensions, who they already ought to know. I understand that they have to know who is in need tobe able to determine who is not, but it is not as simple as this, and therefore, one system does not fit all… therefore even the very words universal Credit strikes fear in my heart. As I have described in some detail, it is hardly possible for one system fit all, as each individual’s level of need varies, and yet to “make work pay” it has been deemed necessary to lump those who are not working together. From next April, the reassessment fun will begin again, twice over, for “Universal Credit” and for the new Personal Independence Payment (PIP) which replaces Disability Living Allowance (DLA).

Every time the system changes, so does my income as I am entirely dependent on the state. Obviously as a Christian who attempts to live out her faith on a daily basis, I know, and have to trust my heavenly Father that he knows what I need and will provide. This week, I lead a bible study focusing on the first four chapters of the book of Esther. This book is about a women who battled with her circumstances, and won, with the help of her God. An appropriate study for me to lead, as it turned out, because the opening question asked which factors in each of our lives we out with our control, and how did it affect us. Of course, the natural answer for me, aside from my illness and disabilities (impairments) is my level of income. This was something of an eye opener for the group, who being caring people began to feel sorry for me as say things like “but surely this does not affect you?” the assumption being that I would quality for support with ease, and so not have anything to worry about. Once I explained, however, that the system changed regularly, and with it my level of income, they understood that this was indeed something out with my control, and therefore something I had to trust the Lord with. They had compassion.

The One with the MP

A number of months ago, as the forthcoming changes were being first discussed, I was, naturally unsure what the changes would mean for me personally. One Saturday, as I was in my local supermarket, I noticed my MP was holding a surgery, so I duly waited in line. My MP listen intently to my story and my questions, as an intern or assistant took notices, and tried to understand my situation. He assured me, as Liberal Democrat, that he was prepared to stand up for sick and disabled people in his constituency, and he would be seeking assurances from his colleagues in Government, that people like me with a genuine need would be provided for. As promised, he wrote to the then Minister for Disabled People, Maria Miller, seeking assurances to that effect. Ms Miller’s answer to my MP was a clearly photocopied stock answer which parroted out the propaganda now associate with this Conservative government, that the forthcoming changes with necessary in order to encourage disabled people, of which I was one, into work, with no acknowledgement that there would be those who could not work, however much they might like to. One had compassion, the other did not. I will leave it to you, to decide which!

What does the Bible say about ‘Compassion?

There are many reasons for the current Government’s lack of compassion, some of which I have outlined above, and partly springs from a lack of understanding and from not knowing the everyday reality of life for someone like me. However, their very understanding of ‘compassion’ may be questioned. In his speech. Cameron was talking about a type of compassion, compassionate conservatism. Surely if they were truly compassionate this would be apparent in every policy this government introduced. however, as I have explained, I am doubtful that the current Government even understands what ‘compassion’ is. I am privileged to know One who does know what compassion means, and that’s the Lord Jesus. There are many scriptures I could quote here, but the one that came to mind first was when Jesus fed the five thousand.

Jesus called his disciples to him and said, “I have compassion for these people; they have already been with me three days and have nothing to eat. I do not want to send them away hungry, or they may collapse on the way. (Mathew 15:32 NIV)

Here, Jesus saw a need he could meet, and dud so, out of the abundance of his love for the people. It may sound obvious, but hungry people need food, In this country, there are people going hungry who do not have food. One example of an organisation trying to meet these needs is the Trussell Trust, who say “Rising costs of food and fuel combined with static income, high unemployment and changes to benefits are causing more and more people to come to foodbanks for help.”If the Government is compassionate, why are people going hungry? To me, this is yet another illustration that they do not know the extent of the need in their own country.