The very definition of irony


I am Sue Marsh. Disability Campaigner.

With just 4 or 5 weeks to go to save Disability Living Allowance, I am working flat out on major research aimed at protecting 3.2 Million vulnerable people from losing benefits that they rely on to survive.

I have severe crohn’s disease. Probably one of the most severe cases in the country.

I have had 7 major life saving operations to remove over 30 obstructions (blockages) from my bowel.

I take chemo-shots every two weeks that suppress my immune system, ensuring that I regularly have to fight infections. Exhaustion, pain and nausea plague every single day of my life.

I have osteoprosis and malnutrition.

I have had major seizures and a stroke.

Nonetheless, I have just heard from my own Disability Living Allowance application, that it has been rejected. Completely. I will receive no support at all from DLA. Despite claiming successfully in the past, despite only getting weaker and more frail and less able to live independently, my reconsideration was rejected.

The only option now is to appeal. I will have to fill in a horribly complicated appeal form over the Xmas period, wait up to one year to go to tribunal, and probably go bankrupt in the mean time.

The state will pay thousands to hear my appeal.

The only conclusion I can come to is that if I don’t qualify for DLA, no-one with bowel disease can.

The reasons they gave for the original rejection were nonsensical and didn’t relate to he information I had given on my form. Today, the letter refusing my reconsideration had no details at all.

I honestly thought that sense would prevail. DLA is not (yet) ESA and decisions are usually taken with at least some logic.

So do I carry on fighting for DLA for 3.2 Million or fight for myself? There simply aren’t the hours in the day to do both. There’s no contest is there? The 3.2 Million must come first. The deadlines are even the same!!!

I just need some help. I cannot clean my home properly any more. I often can’t look after my children or even myself. My husband takes more and more time off work to care for me. It costs me £70 in petrol every time  have to go to the specialist hospital 130 miles away from home. I must spend more on good quality food, or I just get more ill. I don’t want the world, I just want to survive.

What an utter, utter waste of time and resources.

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