Lack of Direction, by Linda McLean

April 23, 2010

Linda McLean (on her wedding day!)

I went from having a satisfying well paid job to a recurrence of epilepsy. I was not long married – and my husband discovered to his dismay that I needed him to be around all the time. This demoralising situation had not been in the plan for the rest of my life.

Suddenly, I could no longer drive; I could no longer shop; I could no longer walk very far on my own; I could no longer do much voluntary work.  Suddenly, I needed a Carer. I needed to find out how the Benefit system worked.

I found that the Benefits System stripped you of all dignity. You had to provide proof of what you had in the bank; your word was not believed. Moreover, expenditure had no part in the equation – merely income.  I don’t know who taught them economics!

Photocopies of the most private papers were taken. Eventually, it hurt so much that I ceased to care. I was asked by a Social Worker if I managed the toilet myself. When I objected to the degree of intrusion, I was simply told: “Ah, it’s the forms – everybody complains about them. They don’t work!”


In dire financial straits, with creditors circling ever closer, I was advised to draw down the lump sum from my pension – not the monthly payments. It would help to satisfy the ever-clamouring bunch, and allow me to pay off a few debts.

This turned out to be a bad idea, which caused mayhem, confusion and distress for months. My bank account was apparently “triggered” when the payment went in, causing consternation on behalf of the Department of Work and pensions (DWP) that I had funds which had not been declared. I was informed that I was to be investigated for fraud.

Fortunately, when the investigators arrived, there was only the detritus of a life that had once been productive, caring, and hard-working; a life where I had saved regularly into a pension, which it seemed I was forbidden to have by the ‘Welfare State’. It was no longer my money, my pension or my choice.

Having won through against accusations of fraud on Income Support, and benefit being reinstated, I was summoned to a medical for my Disability Living Allowance (DLA). At this medical, it was decided by the ‘approved health care professional’ that my epilepsy would improve and I did not qualify for DLA benefit. This indeed was a wondrous thing to be able to announce. My epilepsy has lasted all my life – since I was an infant. It had retreated on occasion into the background, but it had always recurred. There is no known cure for epilepsy. Undeclared epilepsy was grounds for annulment of marriage as late as 1970. It is among the most serious of neurological conditions.

Nobody cared. I was assessed as able. DLA Benefits were stopped.

Several epileptic episodes followed this decision – though whether related to the stress of lack of income or not, I am unable to prove. The most serious event was in the kitchen where without warning, I had an attack and split my head badly.

The decision that I was not disabled was taken to a Tribunal, which was not held for eight months, despite my repeated and increasingly desperate calls for action; eight months without DLA benefit, eight months of mounting bills. The hearing was over in minutes and my appeal was successful.

I was repaid all the money that was outstanding. However, the work and stress involved in making a case that is already well documented, was incredible. Are they unaware that this kind of stress only makes epilepsy worse? The system merely ensures that you are kept disabled or that your condition is aggravated. The system guarantees that you can never have any money. I spend my nights wondering what I can afford. What do I need?  


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