Boxes and Pigeonholes. We just don’t fit.

This morning has been interesting. I have been asked if I could write something about how the British Welfare Benefits system does not take into account the needs and difficulties experienced by disabled people with a medical condition where the effects of the condition fluctuate, so, here goes!

I have Multiple Sclerosis. I am now quite advanced with the condition, being restricted to my bed most of the time, unable to walk, move or do anything for myself so the restrictions I have are pretty obvious but, and it's a big but, I have very clear memories of my battles with the system and when I was still able to go out to work.

The main problem, as far as I am concerned, is the system's inability to be able to cope with people whose condition means that the effects fluctuate. DWP forms and rules seem to like people with conditions that are cut and dried, where nothing really changes day to day. But for many of us, people with MS or ME for example, life is not that simple. People who find that what they can do today is not the same as what they could do yesterday or what they might be able to do tomorrow. And this fluctuation can be on an hourly basis, never mind a daily basis. Someone with a fluctuating condition might be able to do whatever you wanted this morning but this afternoon? No chance.

For me, the main effect of my MS that was not understood, was my fatigue. DWP advisers and employers and many other people seemed to think that MS related fatigue and sleepiness were synonymous with one another. Let me tell you, they are not. Sleepiness can be cured by a nap, fatigue cannot. When I am fatigued due to my MS I can't move, I can't concentrate, I can't think, I can't really do anything much until it wears off. And how long that will take is anyone's guess. For someone with fluctuating condition life can be a daily lottery where we have no real idea of how things will pan out. We have good days and bad days and kind of OK but not brilliant days.

And that's the bit Welfare Benefit forms and Benefits Assessors can't cope with. They want people to be able to answer cut and dried questions about their capabilities but, what they don't seem to be able to understand, is that when it comes to people with fluctuating conditions, we can't. Questions such as 'Can you lift and move a carton of milk' are demanding a 'yes' or 'no' answer. Either you can or you can't. There is no provision for 'maybe, it depends on my fatigue levels'. Before my MS got so much worse I had 'I can' days, 'I can't' days and 'I'm not promising anything but I'll try' days. On a good day I had no trouble lifting and moving little things. On a bad day I could barely lift my arms, let alone anything else. On a 'maybe' day, it was a hit or miss experiment. If you had caught me at the right moment, shifting that milk carton and making a hot drink would have been no problem whatsoever but, if the fatigue had hit, you would have been much more likely to get a puddle on the floor when I dropped the carton than a cuppa. If I was having a fatigue ridden day my arms would be aching and unresponsive, I would have cloudy or double vision and I would have been practically incapable of concentrating on anything for more than a few minutes. And there's your difficulty. What the DWP seem unable to cope with is when assessing people with fluctuating conditions is that these days don't follow a set pattern.

If I were to be asked what might make things better for people with fluctuating conditions then I would suggest that the DWP should pay far more attention to what a benefit applicant's consultants, specialists and medical experts say in their reports. They are the people that know us and, in some cases, have been treating us for years. Benefit Assessors often have little or no medical expertise whatsoever yet they are the people who are being expected to rule on complex conditions they don't really understand. This is what needs to change. This is what the DWP and the Government doesn't seem to understand. People with fluctuating conditions don't fit neatly into officialdom's neat little boxes and pigeonholes. Trying to get help and support shouldn't be a lottery. The stress caused by continually having to explain yourself and how your impairment affects you can often make things worse. Reassess the system, not the people who use it and maybe, just maybe, things will get better for all of us.