PIP review help please -prompting to manage toilet

Gringo1712 · February 28

hi all

I am new to the forum. Short background. Also due to being highly embarrassed about this subject I felt safer posting on this forum as it’s annonymous ? I applied and was awarded PIP on mental health grounds PTSD, anxiety depression. I received a 3.5 year award in 2022 and have just received the review forms. My original assessment was paper based due to my conditions as I requested. They contacted my doctor and CMHT to advise on capability for phone or f2f - they didn’t just grant it on request (just incase anyone in similar situation wondering)

Now onto the most embarrassing part 😳 I was awarded enhanced daily living last time so did not challenge scoring no points on this but I want to ensure they consider it this time around.

I want to try my best to describe this without any offence caused or plainly TMI but pease be kind !

In short due to association with historic trauma I I struggle with toilet needs. I have no physical disabilities. I have no incontinence. My problem is when home alone (most of the time as partner works full time) I cannot bring myself to use the loo due to reexperiencing and feeling unsafe/terrified. It gets so bad I go outside in the garden 😳 I avoid eating during the day too, to limit the chances of needing to go if you know what I mean. I’m having private therapy and really need to process this to help such a normal task for many without physical disability be so less traumatic for me.

when my partners home or family are here it’s easier, after all we all have to go it’s natural. Partner encourages me I’m safe etc

My question is does any body think I will score points for prompting to manage toilet needs ? I believe it has to be to an acceptable standard ?

Any advice please 🙏 thanks in advance

Rosie_Scope · February 28

Hi @Gringo1712, welcome to the community. Please don't feel embarrassed about what you go through, that sounds really difficult to deal with.

I'm afraid I can't confirm for certain whether you'd score points or not as that will always be up to the decision makers, but it does sound like it's worth explaining what your difficulties are. As you say, there's a part of the consideration that should take into account whether you can do an activity:

Safely (this can include intense emotional distress)
To an acceptable standard
Repeatedly
In a reasonable time period, no more than twice as long as a person without a physical or mental health condition would take to carry out the activity.

If you feel able to give some examples of what you've experienced that's often helpful. What happened, whether anyone witnessed it, what the consequences were are often some good points to write down.

If you're interested to read more about the assessment criteria, there's a page about it here that describes how they make decisions. It's a bit difficult to read in places but could be helpful:

PIP assessment guide part 2: the assessment criteria - GOV.UK

Gringo1712 · February 28

hi @Rosie_Scope_

thanks so much for the very helpful reply. I will have a look at the guide. Thanks for the reassurance about trying not to be embarrassed it’s really helpful. It’s something I’ve never been able to put out there because of the anxiety over people’s reactions !

thanks for your kindness

Rosie_Scope · February 28

No problem @Gringo1712, I'm glad some of it was helpful. I've lived through trauma myself and the ways your brain deals with it can be really difficult for others on the outside to understand. I totally get the anxiety behind telling people about these things, it's not easy at all.

I hope your review goes okay 😊

Gringo1712 · February 28

@Rosie_Scope im sorry to hear that you have lived through trauma too and thanks for your understanding. I often say to therapists, GPs etc the irrational takes over with trauma. It’s like two minds, your normal mind and trauma mind ! And to stop the conflict I just avoid most situations 🤦‍♂️

thanks for being a trauma warrior who also helps others. It gives me hope that one day I can too help others !

With regards the PIP review like many people I’m beside myself 😭 part of the trauma is also a fear of interrogations (think crown court setting-defence lawyer calling you a daydreaming liar, fraud, compensation seeker and roasting you whilst giving evidence of the trauma) I really hope I ca get a paper based review assessment.

What scares me most is when first awarded pip I got standard mobility as I could not leave the house. Nowadays I can leave the house only with partner or close and trusted family and only ever in the car. I’m frightened to death of being in the right or wrong category for mobility 😢 I don’t want them to say “oh you can leave the house now and cancel my whole award”, but I also would never lie to pip or anyone else for that matter. Any advice ?

p.s I hate the trauma mind lol

OverlyAnxious · March 1

https://forum.scope.org.uk/discussion/comment/990104#Comment_990104

The going out question is about what you can manage for over 50% of days. So if you still can't go out at all on more than 50% of days due to psychological distress then you should still be on the standard rate Mobility.

However, if you can go out for over 50% of days, but only with another person for mental support, then that should increase your award to Enhanced Mobility.

(This isn't specifically asking whether you do go out for over 50% of days, just whether you are able to.)

I also have a very restricted life due to toilet needs, although different to yours, and could not score any points in that category. As you were awarded Enhanced Daily Living before, then I would just focus on the sections where you got the points for that last time. Though obviously do still write about your toilet needs as a backup in case they do decide to change points in other sections.

Gringo1712 · March 1

hi @OverlyAnxious thanks so much for this advice. Trying to look it up online there are so many conflicting accounts of mobility.

I’m just very anxious about an assessment 🤦‍♂️ I’m praying they do paper based again.

I’m having weekly in person therapy (private) now so I’m hoping that evidences I’m trying to get better too. The waiting lists in my area are literally many years and I’m not even sure if you can have this therapy on the nhs in my area

will I have to make my review a change of circumstances for the mobility ? And I’m guessing that will trigger assessment?

Sorry for all the questions. I’m just anxious about being honest with them and I don’t think I’m in the right mobility group whether they take it away or not !

Many thanks for the advice also on focussing on the points already scored. Ive had increases in both long term meds since applying and on max dose for one 🤦‍♂️ even with that it’s amazing how much this review is affecting me 😢 as it does everybody !

thanks again

OverlyAnxious · March 1

https://forum.scope.org.uk/discussion/comment/990293#Comment_990293

As you're already being reviewed, you don't need to make a change of circumstances.

If they have enough evidence on the form then they'll do it paper based again. If they feel they need more information then they'll contact you for either just one or two questions, or a full assessment.

Having therapy can actually go against you with PIP, as it means your functional ability could improve soon. So I wouldn't put too much emphasis on that as it may end up giving you a shorter award.

Just for reference, I gained a standard Mobility award at review which was done paper based without any further questions or assessment.

Gringo1712 · March 1

thanks again @OverlyAnxious

I am a bit worried about the therapy thing ! I started it recently to try and avoid heading towards another crisis 🤦‍♂️ my partner kept on at me because they could see where it was heading. I refused to call up CMHT because I only ever get increased meds or benzodiazepines 🤦‍♂️

I will let them know I’m having therapy as of course want to be transparent with them. Thanks for the heads up that it can go against me though. Checked on my original application and i said on waiting lists etc and I imagine they will want to focus on that come review to see if I had it and if it helped. I’ve had to switch from EMDR as it’s too much couldn’t cope with it. I’m not ready yet. It’s a nightmare !

It’s good to hear that you had a painlesss review. When you say gained a mobility award did you not previously have any mobility award ?

OverlyAnxious · March 1

https://forum.scope.org.uk/discussion/comment/990325#Comment_990325

Correct, I could not previously score any points in the Mobility section, despite being completely reliant on my own vehicle, unable to use any other vehicle or travel with any other person, and only able to go out for short journeys and short periods at specific times on specific days. Logically I should have been awarded but the descriptors just didn't cover my situation. It was only when I lost the ability to drive and became effectively housebound that I got the Standard Mobility award, which is obviously no use to me at all now that I don't have any transport or travel costs to pay… 🙄

Gringo1712 · March 1

oh no seriously 🤦‍♂️ so now you don’t need the mobility you get mobility. And they say PIP assess your own circumstances!

I’m sorry to hear that you can’t leave the house now. I know how awful it is. If I didn’t have partner and occasionally family to help me I’d be indoors all the time.

It’s so horrible having to go through this process. I’ve only been on pip a short time but suffered MH issues and been on medication over 20 years now. Back when I was a teenager. The original application and now review make me realise why I never applied previously

Thanks so much for your advice

PIP review help please -prompting to manage toilet

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