To be shocked that incontinence is ignored under PIP

[larant]

I have urinary incontinence to the point that I wear nappy like pads all the time. I still have accidents and if I am away from home for long, carry spare clothing as accidents are not uncommon. However under PIP, this is totally irrelevant.

Pausing - even my 9yo with emerging speech (non verbal until this year) would only score 4 points on the reading criteria. He can read a bit. Nowhere near as well as described in d, but it's not not at all. The scorings really are crazy.

The scoring makes sense if all assessors applied it fairly and applied it consistently across the board. It should be I can go from one end of the country to another having assessments and get the same outcome. That's the biggest issue, the inconsistency with application of criteria

The 'one condition of their choosing' is worrying.

For example, I have severe physical disabilities that arose from a mixture of two related conditions, (1 causes the other), but I also have moderate depression and not so moderate ptsd ...

So by that rule they could pick the condition that isn't a barrier (depression), and refuse to take into account the condition that cripples me and means I have carers all day every day.

I hope to God that rule wasn't passed...

And the socialising/communicating questions- as far as I can tell you don't get points for needing a trusted or familiar adult with you, only if you need a specifically trained adult.

Just be confident that you are the expert in you and your condition. Oh and take an advocate in with you to take notes and help put your case over.

Which is fine unless you have no one to go with you.

Well yes I can see an issue if that is the case. There are 'appropriate adult' services though who may help?

I got told because I walked into my assessment and spoke to the assessor I couldn't possibly have anxiety and was making it up. That one pissed me off

There are 'appropriate adult' services though who may help?

Not without PIP as a form of disability proof.

Yes chuffin. Cab told me that some people don't understand mh, bloody understatement!
How do you prove you can't get to places on your own? apparently they deny most people that one.

Yup they denied me that one because I'd driven to the centre from work. Despite the fact due to my ocd and anxiety I'd been planning the route meticulously from the day the appointment letter dropped on my doorstep and had I not done that I'd have had a panic attack

Can I ask for anyone in the PiP know (I'm still on dla)...

With the urinary incontinence issue, what do they class being able to handle it alone? Peoples definitions of handling something tend to change when desperate to keep dignity...

Hypothetically (but something I've seen), someone could be 'managing' in that they are covering up the issues eg by using a urinal at night or when bed bound, but being unable to carry it to the bathroom when full, so has 7-8 urinal containers which are hidden (full) for weeks, sometimes months before they manage to get to the bathroom with them. Can't wash them properly but at least emptying them and splashing in some detergent / bleach. So, living with litres of urine by the bed, using air freshener when they hear a knock & pretending to always be hot so the window is left open all the time.

As you can imagine, not an acceptable way to live, but would the PiP assessment say fine, coping ok by themselves?

To my mind that would be incapable of managing it independently. Yes they can urinate but they need a great deal of assistance to do so and to manage their continence care afterwards.

I had no one to go with me.

It's like that with lot of issues though, ask if you can cook even if that is heating up mircwave meal but ignore the fact that you need to buy it/go to shops, get it home, put it away. Then cook it eat it, then wash up dishes, put away, sort out rubbish and recycling. Managing just one part of it does not make a successful job

Exactly. I can heat up a microwave meal, but not go to the shops to get it.

I think it's because of the time sensitive nature of some of the tasks. If you have a fluctuating condition, for example, you could shop on a good day, rest before putting shopping away, leave washing up until you feel able. Or you could do internet shopping, get a dishwasher to avoid those altogether.

However, cooking and eating your meal are things that need to be done much more often and at an appropriate time. If you've had a bad day, you still need to eat, but you don't need to wash up.

Under the old DLA criteria, I think low rate care was for an hour of help needed per day, either in one go (eg for washing and dressing) or in little bits throughout the day (eg for toileting).

Whereas if you can cook yourself a meal but can't do the shopping, you would need help approx once a week.

Not saying it's right by the way! but I think that is the reasoning behind the decisions.

Yes and since needing help with housework doesn't count, it basically means can you stop yourself starving and dress yourself in a fashion.

I guess it's down to whether they regard emptying a urinal as time sensitive or not. Humm.

And what about showering/ bathing, if someone can't do either but uses wipes does that count as no personal care issues either?

Is the Pip like the dla in that the questions are open & ambiguous but they're actually looking for very specific answers. Eg preparing food - in the dla question they excluded most of the answers around shopping, getting out ingredients etc as they only awarded points for difficulties within a scenario of you sitting at a table with all ingredients in front of you, plus knives etc.

I found the dla to be fair as long as you had advice about what they were actually looking for so you didn't waste time & energy waffling on about irrevelancies.

Yes if you can do a strip wash with wipes, that counts as no bathing issues.

People in my county have no one to help with the form, go to the medical or help with an appeal (I'm excluding family in this - though there are plenty of people who don't have family or anyone else to attend with them). The adult disability service does assessments for things like direct payments ONLY - and in order to have an assessment done you need to prove you can pay the contribution necessary for direct payments here which is ESA premiums and DLA/PIP/AA (attendence allowance if applicable). There is no CAB help since they service was severely reduced by removal of financial support from council, at one point they were open one hour a week which was six ten minute appointments - they refused to help with any applications. Literally all they did was a benefit check.

Three months ago there was an article about how the number of people in this area, my county and a neighbouring one, no longer 'trapped' on disability benefit (DLA/PIP) had massively fallen, likewise JSA. It's fallen because there is no help with forms or appeals due to lack of funding - not because people are well or better.

Which would be well known to those doing assessments and appeals and tribunals.

A strip wash with wipes counts as washing.
PIP meal assessment is about using a microwave for a ready meal, nothing to do with preparation etc.

With PIP low rate care has been removed. That's why you need 8 points for low and 12 for high care in PIP and why the criteria is more narrow.

Becca, do PIP assessors see it as fine if you can only wash in good days, so maybe having a bath once a week?

Just to say there is a website where you pay to be a member and get really indepth advice as to what counts and what doesn't - I think it might be that work and benefits one posted earlier but I'll check with my mom and let you know. It is definitely worth it.

You must have each issue/ problem at least 50% of the time.

The things they have stopped counting is disgusting. For example:

• requiring a hand controlled car because your legs don't work - doesn't count as an aid or adaption! Nor does it count for any points despite the extra cost of car and difficulty getting and etortionate expense in insurance if not through DWP.
• needing help to get dry and dressed after washing - doesn't count - apparently you can just stay wet and naked and hope you don't freeze to death.
• if your disability means you throw up frequently and require help cleaning it up, getting changed, and washing the clothes/carpet/furniture/bedding - it doesn't count
• Anxiety going out doesn't count if its caused by a physical disability - for example you get distressed going out in case you have an incontinence accident. Anxiety only counts if its soley MH related - which is very hard to prove.
• if you can't walk 50m but could theoretically use a wheelchair (even if it had to be a motorised one) - then it doesn't count.

Its diabolical my DB is waiting to see if he gets it ( currently higher rate for care and mobility). It took him, my mom and me over a week of intensively going through the form to mange to fill in the damn thing. He lives in a disabled persons housing development where they all had to provide proof of disability to live there (it took Drs and Consultants letters alongside reciept of higher rate DLA to be allowed to live there), yet his neighbours are now all struggling to qualify for much under PIP.

I'm not an assessor so I really don't know how they would view it. I know a strip wash counts as okay because it was in the guidance for assessors which is online and was relevant to me when I was thinking of applying. do you have CAB or similar you can ask?

Re strip washing: it would probably depend on why you strip wash.they don't consider many intermediary steps to the activities, so going shopping, getting to the bathroom etc. so if you can t get to the bathroom to shower or bathe, that's not really considered, it's can you do it if you were there. Stupidly.

Driving is not covered at all, whether you can or not or need aids or whatever - it's no factor at all.

I think drying yourself is not covered because it would be very similar to washing, so if you can reach your feet for example to wash them then you can reach them to dry them. And the dressing is covered under dressing activity.

I don't think that last part about the wheelchair is right Why. They don't substitute wheelchair use for any of the distances in the criteria. If someone has been told that they need to bring that up at reconsideration / appeal.

And the anxiety would be covered if it is related to a physical difficulty, but only if it is limiting you . So if you are worried about in continuance and research where the toilets are before you go out, that may not score you any points. But if you had to be encouraged to go out every time you left the house because of that anxiety that may score points.

I can't wash or dry my feet. But I still said I could wash myself. You don't physically need to wash your feet do you?