Balance and PIP

Hi all, Thought I would post my experience in case it can help anyone with balance issues.

Applied for, and have been awarded PIP. I felt I met the criteria for standard mobility, and got it. Most surprisingly, in a good way, I now have a blue badge wasn't expecting to qualify. I was surprised a got a few points regarding care needs....I had marked myself as independent but the assessment uncovered a couple of things that I thought were just common sense (using a stool to sit on whilst cooking, and a step for getting in and out of the bath to equal "floor level").

I know a lot of people post up their frustrations at the system. I can only say that for me both DWP and ATOS delivered a good service. I phoned up to start the claim/get the form on 19 march. Face to face assessment on april 22nd, dreaded brown envelope arrived may 6th and first payment made may 8th.

The DWP were pleasant during phone calls, and sorted out an issue for me with no problems. The health professional was efficient and polite....I was surprised for how much we covered in the hour I was there, so little was written up on the report but what was put down were the important bits!

My condition.
I know that having a lot of medical evidence/reports helped me. I felt I didn't have to "prove" I had a condition, only to prove the effects. I can only give my story, and that other peoples balance conditions may have the same effects as mine, but the causes can differ - and I believe that makes a difference in how they assess things (for example, balance issues due to bone absence can be corrected by surgery, inner ear Otoliths aka "stones" moving into the wrong canals can be corrected by "clipping").
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I suffer from vertigo. Not the normal kind which attacks infrequently and is due to problems within the inner ear which can be addressed by positioning manoeuvres. Mine is 24/7. A central nerve between my brain and ears has fried, and is sending and receiving incorrect messages....all the time. I have had neuro physio to control the symptoms. My brain now has to actively control balance using primarily my vision. So, when I start to physically tire, my brain goes too - brain fog/forgetting/unable to multi task etc etc.........and if I do too much mentally, the physical side goes. Theres lots of things I cant do now due to sensory overload....for example even supermarket shopping is an assault course, need someone to help me for the high and low stuff, too much noise/visual stuff....my spatial awareness is lacking so its hit and miss if things make it in the trolley But thank god for online shopping, solves that problem!

For anyone thinking of claiming PIP for a balance problem I would advise the following based on my experience. Get a good amount of evidence. Yes, the decision maker should take your view on things....but their assessment may not match yours, whereas specific objective evidence is hard to misinterpret. A G.Ps letter saying you attend regularly for ear problems isn't enough - that only shows a problem not the effects on you. . I had a specialist ENT letter detailing what tests had been done and the results. This was supplemented by my neuro physio action plan which evidence the problems I have with walking etc, and the limit to which success they achieved, and the outstanding issues that remain. But what really helped was my occupation health letter. This wasn't done for the DWP, occy health are only concerned with employment issues, but it was done for my boss to make reasonable adaptations . These were just the things that illustrated the effects my condition has on me. For example, I could not do some tasks at work because I could not stand for more than X period of time, wasn't allowed to walk in a certain area (too far and nothing to hold onto for support).

I stated on my form that I could walk, but that the balance issue means I am a falls risk. I ticked the "it varies" option on the form.

The face to face assessment got to the nitty gritty. The assessor stripped away all the "well on one day I can do this, the next day I cant". He used the descriptors this site recommends - safely, repeatedly, timely etc. Did I feel safe when I was walking? How often did I stop? What made me stop? How long did it take me to do X, Y or Z....and how did it differ to before my condition? Could I do a days work and then do X.Y.Z? Could I go round a supermarket without needing the trolley for me more than the shopping? If I did something in the morning, could I do an equivalent different acitivity in the afternoon?

All questions aimed at finding out the safe, reliable, repeatedly factors. Well, by the time he had finished I realised that if a decision maker had looked only at my form, they would have assumed I could walk with problems quite a distance....and I doubt if I would have met more the the 2 point critera. The way the assessor explained my mobility in his report got me 10 points. It was accurate, just how he worded it that made all the difference. So, for people working out what to say....its not "I can walk 100 metres but I have problems" because all the decision maker can see is 100metres.

If it was explained in this type of way..... A normal route I have done over the years is to walk to the corner shop which is a distance of 100 metres. I can cover 20 metres but will then need to hold onto a fence, or a wall to maintain my balance and keep me safe from falling....I can walk another 30 metres then I have to stop because of the imbalance and visual disturbance, I will have to wait 10 minutes before the symptoms decrease enough to continue. I will have to stop at least twice on the journey. By the time I reach the shop it has taken me X time, which is more than twice as long as it used to before I got ill. It would take me even longer on the return journey with more stops. I could not go to the shop again the same day because it would take me X time to recover.

The assessor did that for me. By uncovering at what point I met the first "reliably" criteria he deduced I could do between 20-50 metres before safety came into play. It did not matter than I could go onto walk futher than this......quite a bit further.......it was only the distance I could cover before the symptoms threatened my safety that was measured

So, sorry for the long sunday ramblings. Hope they might help someone. I am no expert, but I might be able to answer queries re balance problems so I don't mind anyone posting.

Ty

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This is so helpful. Thank you so much. I suffer from Meniere's balance issues as well as leg prosthesis balance issues and have just been turned down. I shall use your guidance for the M.R.

Thank you again.

Hi Green, glad to have helped.

I am more knowledgeable on all things "vestibular", but by no means an expert. I read your post and thought of two things. I put in questions for you, not to answer to me but to get you thinking of answers (explanations) you might consider for your MR.

Firstly, people with Meniere's are recommended to have a low salt diet (and a couple of other things but cant remember what) which should have an effect of the fluid density in your ears, which may help to minimise risk of drop attack. Have you had this advice and followed it? Has it not made any/no difference to your symptoms?
You would also need to explain that either the drop attacks occur so often you would meet the 50%+ criteria....or your focusing on a constant imbalance with the drop attacks as secondary.

Secondly, the leg prosthesis. As far as I am aware any aid must be replacing or assisting the impaired function. If you have weak leg muscles and this affects your balance, then an aid to support the muscles would be doing its job. But, how does the aid (or not) address the sense of imbalance felt when walking? how does it specifically relate to Meniere's - ie what use is it for those specific symptoms?


Likewise, an artificial limb replaces physical function ie to stand and walk..which involves balance.....but, the balance system works on three things...vestibular, vision, and muscle feedback (your joints and muscles tell your brain where you are in space).... so the limb will help you in one way -mechanically....but you still have the vesibular problem ..... how can this help the neuro sensory feeling of imbalance originating from your ears? Do you have vision problems beyond say short sight that could be affecting your balance system?

HTH!

This post was nearly 4 years - but massively helpful for me as I am claiming PIP for balance problems. Thank you. S

A small percentage of people will be passed for pip,otherwise they would be failing in there job,when central government makes the disabled as shirkers,then there will be upsetts on every side,I was assesed after having a RTA,along with menuires disease,and Asbestos damaged lungs,And guess what 0 points,these tests are being carried out by Ambulance drivers,Nurses,therapists, These tests must be performed by medical doctors. untill this Madness is sorted out.