How sick is sick enough??

So, the axe is about to fall.

Even this morning, we hear that £1.5 billion will be "saved" from Disability Living Allowance, and we know that Osborne wants to get as many as 1.5 million of the 2.4 million claiming ESA "back to work".

Most people probably don't even know the difference between the two benefits, and often in the media, they are lumped together as "Disability Benefits". ESA (Employment Support Allowance, previously Incapacity benefit) is the payment received when you become unable to work on medical grounds. After a certain length of time, the payment increases slightly as you are considered "long term" sick. DLA (Disability Living Allowance) is a benefit paid on top of ESA and is split into two components, a mobility component for those who's illness or disability compromises their mobility significantly, or a care component for those who are in need of extra care to live their lives. (ie incontinence care, help with washing or dressing etc)

Each benefit requires the claimant to fill in around 40 pages of questions, and each question requires an essay style answer - the unknowing claimant who writes "yes" or "no" or "maybe" will not get a positive outcome. The questions are subtly repeated to dig for anomalies and require the claimant to share information they probably don't share with their own partners.

DLA is incredibly difficult to get and is archaic in it's assessment of need. It is so focussed on "Disability" that it is almost impossible to fill in the forms if you have an "Illness" that equally disrupts you life. Many long term ESA recipients don't even bother applying for DLA (whether they would be entitled to it or not) because they feel it is only for those in wheelchairs or those with an acute physical deformity. There are incredibly strict criteria based on a "points" system (how degrading is that? like Nectar for dysfunction?). 

For many years, my condition was considered so serious, that I was largely left alone. For 9 years, I received Incapacity Benefit, and my only input was to fill in the dreaded 40 page form every three years. Some had to fill them in more regularly or attend an "assessment", but some logic in the system somewhere meant that I was not troubled.

Until last year.

Sometime during the summer, a letter fell through my door "inviting" me to an assessment of my condition. When I say "inviting", I of course mean "summoning" - if I didn't call to arrange the appointment within a certain time, my benefits would stop. If I didn't attend the appointment, my benefits would stop.

The letter was astounding from start to finish. I had to bring a passport with me to the "assessment" to prove I was who I said I was, and not some professional malingerer paid to act sick. I had to bring every medication, treatment and apparatus with me that I needed or might need. I phoned the call centre about this - sometimes I need a feeding tube and pump, but they're heavy - did I really need to bring it with me? Sometimes I need opiate injections, but they're not really something one would choose to carry through the back-streets of Brighton. (Unless one wanted to turn a profit!) Yes, I needed to bring everything with me - empty boxes wouldn't do, even if they had my prescription details on them.

The most ironic part of the letter was the "How to get Here" sheet. They had kindly included an itinerary showing me how to get to the appointment that included a 7 minute walk to my local train station, three train journeys and a nineteen minute walk at the other end! I joked with my family that it felt like a 16th Century witch trial - if I could make the journey they suggested, I wasn't sick enough and they would stop my benefits, if I didn't make it, they would stop my benefits anyway for not showing up!!

Well, on the day of the appointment, my Mum drove me to Brighton, my husband took a day off to look after the kids and sick with worry, we found the "assessment centre". It was a grey, bunker of a place, with grills at the windows and grills at the reception desk window. There were two intercoms to get in the door and the carpets were stained. It smelt of urine.

I handed over my passport at the window and was told to take a seat. Perhaps 8 or 9 other people sat around looking miserable and frightened, no-one really spoke. One woman was in a wheelchair very obviously missing a leg, another chap, sitting slightly apart from everyone else had Parkinson's and sat there, shaking uncontrollably. The others, looked like me. You couldn't have immediately known what was wrong with them.

After a long and unexplained wait in the gloomy, urine hole, my name was called and I struggled towards the office with three enormous and very heavy bags and a cool bag containing my immuno-suppressants that need to be kept refrigerated.

At first, the "assessor" was detached, even a little cold. She asked me to show her my medications, and I went about emptying the three carrier bags onto her desk. Drugs for pain, drugs for sickness, drugs for inflammation, drugs for osteoporosis, (caused by a lifetime on steroids) dietary supplements, liquid feed, feeding tubes, syringes, hypodermics, dressings, drugs for acid caused by the other drugs, immuno-suppressants, swabs, all tumbled out onto her desk and her attitude changed dramatically. I'd included some pictures of my poor little body a month or two before just after I'd had surgery. My arms, stomach and legs were literally covered in angry, purple bruises from central lines and incisions and my ribs stood out like the bars on the receptionist's window.

She pretty much told me the "assessment" was over at that point (I wondered why I couldn't have just sent them my repeat prescription sheet.....)

I was still on Incapacity Benefit and being assessed accordingly, but most were there as they were being changed over to the new ESA. My assessor told me it was lucky I was still on Incapacity for the time being, as to qualify for ESA was almost impossible. In her own words, she told me "If you lose one eye they tell you to use the other one, if you lose one leg or one arm they tell you to use the other. It's not until you can't walk move OR see that you qualify."

At this stage, some of you might be thinking "Well, of course I'm sympathetic, but what else can be done? How else do we catch the cheats?"

And that is the point of this post. You will never catch the cheats this way. If you are a cheat, you will pretend and you will be much better at it than someone who is genuinely sick. People like me, spend every waking moment trying to pretend we're not as ill as we really are. Cheats spend every waking moment pretending they are sicker than they really are. In fact I've often thought that the more a claimant minimises their condition, the more entitled they probably are to help. Incapacity Benefit needs proof from your GP, but some GPs know full well that the person in front of them is not really sick, but are too intimidated or disillusioned to say so.

So what is the solution? Surely "assessments" are just designed to deter as many of the genuinely sick as possible? You feel so utterly degraded, despised and worthless at the end of the process, you would do almost anything not to go through it again. It is remarkably convenient as a tool to show rich, healthy, Telegraph readers that governments are tough on the recipients of the tax they manage not to avoid, but I'm convinced it doesn't stop any cheats from getting through. If they make it unbearable enough, some will simply decide to work themselves to death to avoid the crushing horror of lining up to be judged.

Assessment implies doubt, mistrust, guilt, burden. It is entirely unnecessary, merely a contrivance to make governments look "tough on scroungers"

My solution is that if you don't have a consultant, who can confirm that you have a serious condition that has caused you considerable distress over the course of the year, you don't qualify. It surely wouldn't be beyond the combined talents of the NHS IT departments to design a programme allowing consultants to press a button, write a short precis of their patient and submit it to the DSS? Consultants would have access to x-rays, test results, medical history and surgical history. They would not have the same personal link to the patient, allowing abuse and intimidation. Sure, some would still try to cheat the consultants, but a specialist who has devoted his or her life to a particular condition is not to be fooled easily. 

The question therefore is do governments want to make things better? Do they want to stop abuse of the system? Do they want to save on the cost of assessing claimants and the vast cost of appeals when the assessor is overzealous or just plain wrong? Do they want to weed out the cheats? Or does it actually suit them to line us all up like the burden they consider us to be and try to deter us from getting any help at all? Do they actually know that cheats in fact make up a very small percentage of claims and that most people are genuinely in need of help. 

I'll leave you with this thought. I've tried for years to find out how many people suffer from a chronic illness or disability in the UK and the figure eludes me. However, a quick scan of the web tells me that around 3.7 million people have lung disease, 2.6 million people have diabetes, 180,000 people suffer from bowel disease, 5.4 million people suffer from asthma, 2.6 million live with heart disease, around 300,000 people a year are diagnosed with cancer, 1800 babies a year are born with cerebral palsy, 640,000 people live with schizophrenia, 820,000 live with Alzheimers or dementia, 19,000 receive dialysis for kidney failure, 23,000 are deaf blind, around 40,000 people have suffered a spinal injury and 8,500 people suffer from cystic fibrosis. Whilst only scratching the surface, we're well above 17 million already, yet only 2.4 million people claim ESA. That's at least 14 and a half million people living with a severe illness or disability not claiming anything at all. 

Assessments would appear to be a better deterrent than we think wouldn't they? And many, many sick people don't want to be "scroungers" after all.