Author Topic: Repeatedly and reliably?  (Read 689 times)

Fiz

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Repeatedly and reliably?
« on: March 09, 2018, 04:54:09 AM »
My CPN thinks it's really important that I apply for PIP mobility as I'm housebound at present due to pain and it's seriously impacting my mental health.

I have phoned the PIP current claimant's change of circs phone line and apparently the PIP claim form for a change of circumstances is slightly different to the main claim forms but is much the same on the whole. And it takes 3 to 4 working days to get to me. I'm guessing even though it's a change of circs form there will be a time limit for returning it.

With the mobility rather than just focusing on the distance I am able to walk, I am going to focus on the pain walking causes me, not just at the time, but a walk can leave me in intense pain requiring me to bed rest for 2-4 days depending on the walk and neuropathic triggers during the walk. Obviously I have the pain relief evidence I take 24/7 in order to move around the house but the top up medications too that is needed before I need to walk or before I get in and out of a car (always very painful) and the medication needed to recover from a walk.

When answering a question am I right in thinking that when you consider whether you can do something, that you have to be able to say you can do something repeatedly and reliably in order to say yes you can do it? Some phrase like that is ringing bells somewhere.

Any advice on completing the form based on pain the actions give rather than can I walk a set amount of metres would be greatly received. My CPN feels that there's no chance that I will lose my care award because the points awarded at my 2016 PIP assessment was way and above the points needed for enhanced and I'm much worse than I was then.

I'm dreading the whole thing but my care coordinator has returned from maternity leave and the difference in my mobility, obvious pain and my mental health being far worse due to being housebound says it's incredibly noticeable to her due to the 15 months since she was my care coordinator before.

She's going to fill in the forms but any pointers appreciated plus pointers to discuss with my GP to discuss regarding a letter of evidence from her. For one thing, all my appointments to see her are adjacent appointments to the friend who can give me lifts when she's not working, without those lifts I can't see the GP and we talk on the phone. She can say that, list me medications, info from the Spinal Consultant and she's aware of the pain I get walking, and after walking too.

My CPN has returned from maternity leave working only part time now, and only works Wed-Fri so I just hope any face to face assessment if needed will be on a day she's available to take me. I guess even a change of circs application will still require a face to face and they won't just accept my application form and evidence from my CPN and GP. From what the man on the phone said, it sounds as if they process these claims faster than new or renewal claims but that was implied rather than said.

Sunny Clouds

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Re: Repeatedly and reliably?
« Reply #1 on: March 09, 2018, 10:55:25 AM »
Yes, there's repeatedly and reliably and other stuff.  You have to be able to keep doing stuff as often as needed.  Eg. it's no use being able to walk to the bottom of your drive if you can't, after a reasonable break, walk back up it.  It's no use being able to go to the shops (even if it means taking a  taxi there) if you're then laid up in bed for several days.

I'll see if I can find a quote or two.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Repeatedly and reliably?
« Reply #2 on: March 09, 2018, 10:56:40 AM »
Safely - in a way that is unlikely to cause harm to you or anyone else, either during or after you have completed the task.  The DWP must consider whether there is a real possibility of harm occurring that cannot be ignored, considering the nature and gravity of the harm in question.

To an acceptable standard - a standard that is good enough; ie of a standard that most people would normally expect to achieve.  An example of not completing a task to an acceptable standard would be if you can wash yourself but you do not realise you have done so inadequately and are still not clean after you have finished.

Repeatedly - being able to repeat the task as often as is reasonably required.  The cumulative effects of symptoms such as pain and fatigue are relevant because the effort of completing a task could make it harder for you to repeat it or to complete other tasks.  For instance, if you are able to prepare breakfast without help, but the exhaustion from doing this means that you could not prepare another meal that day, you should be treated as being unable to prepare a meal unaided.  This is because it is reasonable to expect someone to be able to prepare more than one meal a day.

In a reasonable time - no more than twice as long as the maximum amount of tie that a person without your physical or mental condition would normally take to complete the task.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Repeatedly and reliably?
« Reply #3 on: March 09, 2018, 11:00:04 AM »
I don't know where I originally got that from.  Perhaps someone else could identify the source.  I just know I found the definitions and kept them, which means they're either statutory or from case law not just a personal opinion.  That doesn't mean they couldn't have been amended.

But at least they're a starting point.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: Repeatedly and reliably?
« Reply #4 on: March 09, 2018, 11:31:28 AM »
BTW - just noticed the time at which you posted your question, Fiz.  It was rather early.  You  might just be an early bird or something, which I'm not, but I find myself wondering whether worry or pain was keeping you awake.  Just in case, have some hugs.

 >bighugs< >bighugs<
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Repeatedly and reliably?
« Reply #5 on: March 09, 2018, 04:51:48 PM »
Safely - in a way that is unlikely to cause harm to you or anyone else, either during or after you have completed the task.  The DWP must consider whether there is a real possibility of harm occurring that cannot be ignored, considering the nature and gravity of the harm in question.

To an acceptable standard - a standard that is good enough; ie of a standard that most people would normally expect to achieve.  An example of not completing a task to an acceptable standard would be if you can wash yourself but you do not realise you have done so inadequately and are still not clean after you have finished.

Repeatedly - being able to repeat the task as often as is reasonably required.  The cumulative effects of symptoms such as pain and fatigue are relevant because the effort of completing a task could make it harder for you to repeat it or to complete other tasks.  For instance, if you are able to prepare breakfast without help, but the exhaustion from doing this means that you could not prepare another meal that day, you should be treated as being unable to prepare a meal unaided.  This is because it is reasonable to expect someone to be able to prepare more than one meal a day.

In a reasonable time - no more than twice as long as the maximum amount of tie that a person without your physical or mental condition would normally take to complete the task.

Thank you sunny, that is EXACTLY what I was thinking of and what I need. I hope it's still currently accurate. Giving this to my GP will help her know what to write too because it's so easy to think a person walked from A to B without thinking the pain and inability to function afterwards aren't relevant.

I am struggling at the moment, so sleep is almost non existent. I'm not functioning well either so it's just taking each day hour by hour. I've just completely switched the contents of tomorrow's online shop, when I first placed the order I put ingredients into the basket but now I'm well below being able to cook so switched that lot to hand to mouth things which is more appropriate at present.

I'm not looking forward to going through this but everybody who knows me says I will definitely get standard rate mobility and some people think I'd get enhanced. I have no idea but as my CPN is going to do all the forms and in her words "we can but try". I absolutely hate the face to face assessments too. But any award given now will hopefully mean my next assessment won't be until 2021 if I get a 3 year award. I just need to chill if possible until the forms arrive really.

Thanks for your help sunny.

KizzyKazaer

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Re: Repeatedly and reliably?
« Reply #6 on: March 09, 2018, 05:04:06 PM »
If you can get in the mood for a good read, this covers your above points (and much more) as well -  the DWP guidance for assessors themselves:

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/665635/pip-assessment-guide-part-2-assessment-criteria.pdf

Monic1511

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Re: Repeatedly and reliably?
« Reply #7 on: March 09, 2018, 08:26:42 PM »
Fiz
the change of circs form I have seen asks questions like.
Meal Preparation
Please tell us about your ability to make a meal.
is it Better, worse, no change

You tick one of the boxes and then there is a box that says, if there has been a change please tell us what has changed.
Personally I dont like this form because the dwp compare it to the original award / refusal rather than what happened if a case was won at appeal.

For yourself I believe that the CPN is thinking that you would meet the criteria about going out and under Planning and following journeys.
you get 10 points for E: Cannot undertake any journey because it would cause overwhelming psycological distress to the claimant.

then your looking for 4 or more points for distance.  Moving around: can stand and then move more than 50 meters but no more than 200 meters either aided or unaided - 4 points.   or  can stand and then move more than 20 meters but no more than 50 meters either aided or unaided 8 points.

If you got 1e and 2 c = 18 pointsyou would get an award of enhanced mobility.

I think the way to do this would be to get out the original award letter and then keep that next to you when doing the form.

You are correct about repeatedly reliably and safely - this is where people with epilepsy win at tribunal  - there is a comissioners decision that says something like if you cannot complete the task safely all of the times them the dwp has to treat you as being unable to complete the task .

good luck
Monic

Fiz

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Re: Repeatedly and reliably?
« Reply #8 on: March 12, 2018, 04:23:54 PM »
Fiz

For yourself I believe that the CPN is thinking that you would meet the criteria about going out and under Planning and following journeys.
you get 10 points for E: Cannot undertake any journey because it would cause overwhelming psycological distress to the claimant.

then your looking for 4 or more points for distance.  Moving around: can stand and then move more than 50 meters but no more than 200 meters either aided or unaided - 4 points.   or  can stand and then move more than 20 meters but no more than 50 meters either aided or unaided 8 points.

If you got 1e and 2 c = 18 pointsyou would get an award of enhanced mobility.

I think the way to do this would be to get out the original award letter and then keep that next to you when doing the form.

You are correct about repeatedly reliably and safely - this is where people with epilepsy win at tribunal  - there is a comissioners decision that says something like if you cannot complete the task safely all of the times them the dwp has to treat you as being unable to complete the task .

Actually we'd been thinking of the pain walking causes me. If I walk a distance, quite possibly 200 metres, I wouldn't manage to get home again because the pain is unbearable. Not only that but if I had walked that far I am in so much pain that I am bedridden for 2-3 days to recover. Because of this I rarely leave the house.

But today, completely by chance as I live in complete chaos and it's something I thought I'd never see again, I found my original PIP claim form and the letters that my GP and my CPN wrote in support of my application. Both the professional support letters stated that it's virtually impossible for me to leave the house as it causes me extreme distress and I wrote that on my claim for too. And yet in that section the assessor gave me the points for "needs prompting to go outdoors and engage with people" so I scored 4 for mobility rather than the cannot make a journey due to distress which would have been more points though not enough then to make any difference to the outcome. Looking back I had all the evidence I needed for the is unable to make any journey due to distress but a) I was relieved to be awarded the care component and realise I wouldn't starve and b) I did not have the mental ability to challenge any decision. I was detained under the MHA a month after the decision arrived.

It's true, I rarely go out. I'd go to my local shop if it weren't for the pain it would cause me but I don't go because of the pain. I was thinking of saying although I can walk X distance this causes me severe pain for which I take a, b and c medication and then require bed rest for 3 days until the pain eases so I thought that I would meet the repeatedly section sunny quoted. I can honestly say that I've never left the house more than once a week because it takes me so many days to recover and that one trip a week is when I'm picked up and dropped off.

So I'm thinking we need to outline clearly both the cannot make a journey because of the distress caused and the mobility cannot be made reliably or repeatedly.  I've the SH that evidences how distressed I get going to appointments  and how I react afterwards to calm my distress but I guess that means showing someone and it's something I've always tried to hide. I have a few paramedic slips describing wounds and stitches.

When I had a car I'd attempt to go to church, and I'd sit at the back as inconspicuous as possible but if I had a panic attack as I frequently did I could leave the church through the rear doors without being noticed and drive home. I haven't been to church since the car went in March 2016 because although my friend has offered me lifts and has said she'll sit at the back with me despite liking to be at the front but if I have a panic attack which usually happens, I can't just up and leave when someone else gave me a lift and it's too painful to walk home. So I've not been to church since March 2016.

So I need to say again that I cannot undertake a journey due to distress it cases me, I had the evidence for that last time so I guess I get the same again, and I'm also going to explain the impact one walk can have on me and how long it takes to recover so I cannot walk repeatedly and reliably.

Does that sound any good Monic? 

Monic1511

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Re: Repeatedly and reliably?
« Reply #9 on: March 12, 2018, 08:31:02 PM »
Hi Fiz
The criteria has changed for the mobility and the government has been told they cannot discount psychological distress, I know it was ignored last time but I'm not sure if it was ignored because of the illegal rule change or because the assessor didn't think it was all the time.  That's why you got 4 points

I know what you mean about pain but your looking at proving you cannot mobilise between 0 and 20 meters to get the enhanced rate solely on physical health issues,  that's why I mentioned your psychological distress.

one thing that jumped out at me was the statement " When I had a car I'd attempt to go to church, and I'd sit at the back as inconspicuous as possible but if I had a panic attack as I frequently did I could leave the church through the rear doors without being noticed and drive home."   
Now I am playing devils advocate but the first thing your asked is - Is it a manual car -please say its automatic as they are seemingly easier to manoeuvre.   Then how often do you drive, for how long and does the dvla know of your illnesses.  Then it would be how can you drive home safely while having a panic attack.    From the DWP point of view to drive means you can multi task and concentrate and control a lethal weapon - as the chair said to one person "you drive your manual car around the town doing the nursery run but you cannot prepare a simple meal like beans on toast, is that correct?"  Person said yes because I know the route and only do this particular drive, my partner makes the meals because I'm not safe in the kitchen."   

I've just re read your statement and I would word it like this:

Due to the extensive pain I live with I am not able to walk more than 10 - 15 steps without having to stop and rest.  I cannot repeatedly walk and distance due to the pain. If I have to walk a further distance it takes me 3 days to recover from the pain and the effects of the medication I need to take to complete the task.    (this is the second part of the mobility questions)

Planning a journey:  Due to my mental health problems I am rarely able to leave my home.  I become so distressed at the thought of having to go out and engage with other people that I start to shut down and cannot function.  the fear overwhelms me to the extent I neglect myself.  I have been detained under the mental health act X times as a result of my distress.   Even going to familiar places leaves me so exhausted physically and mentally that I cannot go out more than once a week.  I only leave my home when I must go out and have missed several necessary appointment due to my inability to leave the home.    The stress of thinking about leaving home causes several days of distress.

you are on the right track with your answers just don't mention driving   >lol<   >bighugs<
Monic

Fiz

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Re: Repeatedly and reliably?
« Reply #10 on: March 13, 2018, 06:31:48 AM »
Thank you Monic, that is VERY helpful.  I definitely feel more prepared for it this time. I can be all over the place with my mood disorder and I think last time I was too unwell to cope with the form. That's another reason the system is broken in my opinion.

I read somewhere that if you are completing a change of circumstances form, they rarely call you in for a face to face assessment,  I really hope that's true. I don't cope with appointments well, and afterwards I calm down in harmful ways. When I'm in an unwell phase I can't even see my GP despite her being fantastic.

Fiz

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Re: Repeatedly and reliably?
« Reply #11 on: March 15, 2018, 05:40:19 PM »
I've just spoken to my GP on the phone. She says she has patients far less distressed and in far less pain than me who have mutability cars and she will totally support my claim. She's taken some notes as to what to put in a support letter as well as a list of all my medication citing those for pain, both 24/7 patches and top ups and she'll also cite the distance I can walk without it leaving me in days of pain. I feel well supported by her. But I told her that it scares me to feel even the tiniest bit of hope that if I get enhanced mobility, I can swap it for a car and I could leave the house which would be amazing,  but having even a tiny bit of hope scares me because if it comes to nothing, I know I will go to dark places. The thought of staring at the same 4 walls all day every day for life etc.

Sometimes I think taking that piece of hope and applying for this change of circumstances is too dangerous a step for me to take.

Fiz

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Re: Repeatedly and reliably?
« Reply #12 on: March 17, 2018, 01:09:07 PM »
Well the dreaded PIP application form arrived today. It's identical to my 2016 form except for the rewording of the unbearable distress caused by making a journey which they would have had to change having lost the parity of esteem case in court. I had a panic attack when I saw it and felt mad trying for an increase due to change of circumstances when I'm not due a reassessment until 2019 but then logically I can see why my CPN wants me to apply in the hope that a mobility award could allow me to leave the house, my mental health has plummeted since becoming housebound due to pain on walking and not having a car and she's thinking practically how to change the practical situation I'm in, in the hope I will have fewer lows and they wouldn't last so long. She's due here on Wednesday and I will read to her the answers I wrote last time on the form with regard to care needs and see if she feels it's the same or I've got worse etc and I'll use the same answers as before if nothing has changed.

Obviously mobility wise things have changed massively since my 2016 assessment so she and I will have to think carefully about the wording of answers and what I put in the extra information box for each mobility question. On Monday I will try my best to phone the DWP to request an extension of time but if I can't manage to my CPN can do it on Wednesday.

Any changes to the care needs I will note down while my CPN is here and then I will write my previous answers in with any necessary changes after my CPN has left to save time so we can use her visit to discuss the mobility and journeys questions. The mobility questions are going to be hard. My GP says she's going to write that I can't walk more than 50 metres without severe pain that requires bed rest for days afterwards to recover. And she's going to say that I can only walk that far because of the opioid patches and other opioid painkillers I take. She'll list all of my medications and how frequently I've been using each.

I told my GP that I'm really scared. If I have even the tiniest of hopes that I might be able to leave my house and go somewhere if the decision is what we believe is accurate and I get turned down then I'm scared I won't cope with the disappointment. Taking this step of going for a change of circumstances,  which is completely true, is a step into the unknown. Like a big black hole and you can't see any light.

KizzyKazaer

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Re: Repeatedly and reliably?
« Reply #13 on: March 17, 2018, 04:41:49 PM »
Of course you'd be scared, Fiz - who wouldn't - but it really does sound like you've thought it through and garnered the support and the backing evidence you will need from both the CPN and the GP, as well as doing a lot of work on the application yourself.  We can only do our best with what we have at the particular time, after all, and you're doing just that...

Quote
I can see why my CPN wants me to apply in the hope that a mobility award could allow me to leave the house, my mental health has plummeted since becoming housebound due to pain on walking and not having a car and she's thinking practically how to change the practical situation I'm in, in the hope I will have fewer lows and they wouldn't last so long.

At long last!  Sometimes there are matters in life that aren't going to magically improve by just telling a person how to 'think in a different way' about them.  Your CPN seems more switched on to reality now!

Monic1511

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Re: Repeatedly and reliably?
« Reply #14 on: March 17, 2018, 07:17:23 PM »
Fiz
the dwp will not give an extension until its a few days 3 or 4 before the return date so if its not due back for over a week then wait before phoning them  >bighugs<

GP says she's going to write that I can't walk more than 50 metres without severe pain  Its 20 meters now for enhanced mobility if that's the only points you'd get but you should get 10 for psychological distress and some for distance as well
« Last Edit: March 17, 2018, 07:19:41 PM by Monic1511 »