Help with the 'moving around' section of PIP form

Hi Gordon,

Thanks for your reply. I do see that the navigation questions relates to sensory problems and balance falls into that category (Medicine sometimes refers to balance as Vestibular Sense) and it is this in particular, added to progressive and fluctuating muscle weakness, that makes all journeys dangerous. You didn't mention balance problems in your reply - is no account taken of lack of this sense in trying to get from A to B? Proprioception is the name given to this sense, it allows us to know our precise position in relation to the external world and neurologists test for it daily in their work. On any given day I have bouts of true vertigo, where the world spins, visual vertigo brought on by external rather than my own movement, imbalance, which differs from vertigo - tripping, stumbling etc and drop attacks - falling to the road/pavement with no warning, resulting in more bashes to the head and invoking enough fear in onlookers to call an ambulance. I am unable to be a passenger in a bus/train/car as this vicarious movement causes a degree of vertigo that makes it impossible. It's certainly fair to say that I shouldn't leave the house unaccompanied but I do - walking has been my pastime all my life and I want to try and walk a little way for the remainder of the time left for being able to do this. If I wanted to go out into the countryside, something that I have done every day of my adult life until three years ago, I would have to use a wheelchair but I just dread this and settle for mobilising myself in short bursts while I still can. Were this happening to my sister, for example, she wouldn't dare to go out on her own and she does have a point, I know.

What I am trying to say is that whenever I go out, it is always unsafe and unreliable and I would argue that I was unable to navigate even a familiar journey (certainly by vehicle) due to sensory impairment - balance in particular but also sight and hearing. I would also argue that it make all of the 'moving around' tasks unsafe and unreliable. Do you have any idea of where I could look for a precedent in this, I haven't been able to turn anything up so far.

There are just too many variables at play, the different diseases, the ascendancy of any one on any given day, changing weather patterns and also the progression of the diseases - this time last year although I knew that I could no longer walk a mile, it never occurred to me that I would now find it frequently impossible to walk a quarter of a mile.

The net position is this; you can become very seriously ill with progressive, terminal disease and because you use the wrong words while talking to a physiotherapist, you can find yourself denied state benefits that were set up to help people with progressive and terminal disease.

Gordon

Thanks very much for your reply; it had not occurred to me that balance might not be viewed as a sense - it seems to be one of about eleven senses and some nerurologists spend their entire careers focused on just this one alone. Can you suggest how to get this across to an assessor?

Lack of a sense of balance does affect the planning and following a journey - on a very bad day, I don't attempt to go out as the risk is just too great so a journey cannot be followed at all. On other days, sudden, instant vertigo leads to abandoning a journey (all of these on foot). Car travel (as a passenger) is often difficult and has to be abandoned and this impacts on treatment; I cannot at the moment get to hospital for brain scan, emg tests etc as car travel has been impossible since late December.

If the DWP did not accept that balance is sensory, would I be able to appeal on this point?

The single manifest problem is not mentioned anywhere in any of the questions, that of feeling ill. The form seems to be directed towards disabled peope rather than people who are disabled by continuing illness. Nobody would expect a person with say, meningitis, to leap up to put the bins out. Feeling ill is a big consideration for those who are ill but is not mentioned anywhere though it is probably the biggest derterminat in what they can or can't do, should I mention this do you think?

Sorry Gordon,

I am having difficuty explaining myself properly. Loss of balance and vertigo are initiated by walking and passive motion (cars etc) - there are no physical effects of this other than falling to the ground and banging your head and this has a huge impact on going out and staying in - it restricts everything.

The feeling ill bit was meant separately, aside from balance . I meant to say that no account is taken in either the ESA or PIP questionnaires of feeling ill, which is striking because both profess to be aimed at ill people yet all questions seem to be applicable only to disability. The distinction between the two is important. A friend is quadreplegic and is very disabled but feels quite 'well' while someone with cancer will find that they are usually unable to do any of the activities in question because they just feel too ill. How do people get this across to the DWP? It just seems such a massive oversight.

I still have no idea which answer to give on either of the last two questions. When you are ill, ratonal thought disappears. If you can't go out because you lack the requisite balance, how can you answer any question about going out.r if while out, you fall to the ground in an instant, like a sack of spuds because 'gravity' just disappeared, how could this not be material to going out?

My illnesses just do not fit these questions and just to halt this endless pondering, I will withdraw my claim.