PIP and changing circumstances

youhave13hours

Hi I'm new here. I have just been awarded PIP but i have a question, due to the disability I have, blepharospasm, once I get treatment (if I get it) I may be better and more able to do things until it wears off, when I'll again be unable to do the things I stated in my assessment.

As far as I know from lots of other people with this disability it's a rolling thing where you can be good for say 8 weeks max but then back to not so good for 4 or 5 weeks maybe more depending on when you get the next treatment.

My question is how you go about informing PIP that things are better for a while but then back to not good? I don't understand how it all works. I would love to be able to go back to work but again I'm struggling to see how that would work too. 

A lot of this is maybe speculating but based on a lot of other people's experience of this condition. I don't know how treatment will work for me yet if at all. 
Thanks if you've read all this. 

poppy123456

PIP is about how you're affected the majority of the time over a 12 month period, so at least 50% of the time. If you have times where you're feeling better than other times then it doesn't affect your claim so no need to contact them.

As you said yourself, you don't know how the treatment will work for you yet, you'll just need to wait and see. Remember, it's not about a diagnosis.

L_Volunteer

I would just like to add a warm welcome @youhave13hours. Please don't hesitate to let us know if there's anything else we can do to support you 

youhave13hours

poppy123456 said:

PIP is about how you're affected the majority of the time over a 12 month period, so at least 50% of the time. If you have times where you're feeling better than other times then it doesn't affect your claim so no need to contact them.

As you said yourself, you don't know how the treatment will work for you yet, you'll just need to wait and see. Remember, it's not about a diagnosis.

Thanks that makes more sense. And yes I don't know how the treatment will work yet and how it will affect me. So just a wait and see then? I am an overthinker so constantly wonder about future possibilities. 

youhave13hours

L_Volunteer said:

I would just like to add a warm welcome @youhave13hours. Please don't hesitate to let us know if there's anything else we can do to support you 

Thank you that's very kind. I have been lurking reading other posts so thought I'd join as I couldn't find an answer to my question. This is all new to me as my condition only started last year. Lost my job beginning of this month. In my head I thought I'd get treatment and go back to work and everything would be normal again. In the real world things don't happen as quick as that! 

I will try and help support others too if I have any insightful input

L_Volunteer

That sounds really difficult @youhave13hours. Yep, unfortunately, things don't tend to happen as quick as that - even though we would often like them to 

Please don't hesitate to let us know if we can do anything, in particular, to support you. How are you coping with everything at the moment?

Thank you for being willing to try and support others too if you have any insightful input. It is people like you who make this community the supportive and friendly space it is 

youhave13hours

L_Volunteer said:

Please don't hesitate to let us know if we can do anything, in particular, to support you. How are you coping with everything at the moment?

Thank you for being willing to try and support others too if you have any insightful input. It is people like you who make this community the supportive and friendly space it is 

I haven't been coping too well at times. I am bipolar too which adds more fun in to the mix. But I have a good group of friends that I spend time with a few times a week which helps. I have better days. Trying to focus on my first borns up coming 18th birthday, she is a great help to me. 

I would love to know what sort of jobs are out there that I could do, is there anything that can work around my condition? Down side is I live out in the sticks as some would say and there's not a lot around me. 

I'm feeling in a good mood right now as Call the Midwife is on soon so that's my night sorted  

Hannah_Alumni

@youhave13hours

Hello! welcome to the community I really like your username! 

Just wanted to comment that Scope have a fantastic Support to work programme if you were looking for any additional advice or support  

L_Volunteer

You have been really brave in sharing this with us @youhave13hours, particularly since you haven't been coping too well at times.

I can hear how bipolar may add more fun to the mix! Really positive to hear you have quite a strong network of friends though. 

In what way would you want a job to work around your condition? I want to make sure I hear you as clearly as I can.

There are lots of different jobs and each will be better for individuals than other jobs. There are also adjustments within the workplace that can be made.

Home-based and hybrid working seems to have opened a new field of jobs. Not least for those of us where there are fewer jobs in our local areas.

Hope you enjoyed watching Call the Midwife. Take care for now and I will look forward to, hopefully, hearing from you again soon and supporting you further