I feel trapped and I don't know what to do anymore

Atlas35

Hello,

I have a part time job (I work in retail in a stockroom and I've been there for over 7 years). I usually work up to 16 hours a week and I also volunteer for an MS charity as a video editor because this charity made a huge difference to my life when I was diagnosed with MS almost 5 years ago.

My part time job involves me being on a timer so I am always rushing to beat the clock. Just to give you an idea of what it involves - I have to scan tubs and every tub gives you a certain amount of time to take every item out of the tub, strip the items, tag them, hang them, cube them and then when I have a full rail of clothes that I've processed, I have to scan every item individually to find out if it belongs on the shopfloor or in the stockroom and then I have to put all the items away wherever they belong. All this is on a timer so it's not easy because it's a big rush but it keeps me active.

However, I do struggle with some MS symptoms, including MS fatigue, and when I overdo it and take on too many extra shifts, my symptoms feel worse. There are also days when I've had longer shifts and I've ended up with a very bad headache, feeling sick and then I've felt drained and had no energy for several days. There's no way I could do that 5 days a week.
In the past, I have struggled so much, my boss let me spread my hours out across the week so that I didn't have to work long shifts. So for example, instead of doing a 6 hour shift for one day, I'd do 3 hours for 2 days. That's when my fatigue was really bad a few years back.

It's frustrating. I would love to be able to work a full time job and earn more but I feel trapped at the moment.

I applied for PIP earlier in the year and after the telephone appointment, I scored 0 points.
I've since asked for a Mandatory Reconsideration.

As I only work part time, I am signed onto Universal Credit. Because my wages aren't consistently high enough and UC now want me to do around 20 hours every week, UC has been demanding that I have fortnightly appointments with them to discuss what I could be doing to get more work.

As I work in retail, sometimes the hours aren't there anyway and there have been a few months in the last few years where I have only been able to work my contracted hours which is 10 hours per week. That is not often but it has happened when the store has been quiet.

The Universal Credit work coach first told me I would have to get another job if my hours didn't increase. They know about my MS but didn't acknowledge it. I was fighting back tears and I just didn't have the energy to tell them how my MS affects me. I just wanted to get out of there.
Then the next appointment I had, they brought up my MS and the work coach was a little more understanding but repeated that I need to be working more hours.
Then the next appointment, he said, he wouldn't pressure anyone with a health condition but could I get a fit note from my GP.
I explained my situation to my GP and she's given me a fit note for 3 months (as it's my first fit note). I'm still having to have appointments with UC though. Which seems pointless but I feel like I am being treated like I am sitting down all day doing nothing and contributing nothing and asking for money I don't deserve and am not entitled to.

I am working as much as I feel able to. I enjoy the job that I have. I've been there for over 7 years. I'm not asking to stop working.
Is it really so wrong of me to feel that I could just use a little bit of support and help?
I'm just not in a position where I feel I am capable of doing the job that I do, full time.
But I literally feel like I'm just stuck and I just don't know what to do.

If anyone could advise me here, it would really mean a lot.

Rosie_Scope

I'm really sorry you're going through all this @Atlas35, it sounds really difficult.

We've got lots of members who have been through Mandatory Reconsiderations and Tribunals with their PIP, so you won't be alone if you have any questions about the process.

It does seem unreasonable for your work coaches to not be taking your health into account when deciding your commitments. Hopefully the fit note takes the pressure off for a little while. Have you had a Work Capability Assessment?

Atlas35

https://forum.scope.org.uk/discussion/comment/896394#Comment_896394

Thank you for replying @Rosie_Scope

I was told that the work capability assessment questionnaire is in the post so I should get that soon.

Re the Mandatory Reconsideration, I sent the forms off last month and I have since received a text to say that it can take up 15 weeks etc. But I just wondered, as I now have a fit note from my GP, should I send that too for the MR?

Rosie_Scope

Hi @Atlas35,

It's good you're getting your WCA done. Once the forms are in it can take a little while to get an assessment date through, but if you're found to be Limited Capability for Work (LCW) or Limited Capability for Work and Work-Related Activity (LCWRA), you shouldn't need to search for work beyond what you can manage, so things will hopefully get easier.

PIP is more about how your conditions affect your daily life, so while you could send in your fit note for your MR it probably wouldn't be all that informative for them. A lot of the time the assessors are looking for real world examples of how your conditions affect you day-to-day to match up with the descriptors they use to gather points. Some people find that sending in evidence has helped their case and others find that it doesn't, it seems to be a bit of a lottery whether they use the evidence or not. The descriptors are here if you'd like to read through them again:

Personal Independence Payment (PIP) activities, descriptors and points | Advicenow

judie

https://forum.scope.org.uk/discussion/120953/i-feel-trapped-and-i-dont-know-what-to-do-anymore

It sounds to me like you are doing everything you can, even though it is difficult for you and are getting no credit for your efforts.

I got 0 points on a couple of my PIP assessments and then received highest level support after a MR, so fingers crossed.

I don't know how far you have to travel to get to your job centre or if you find going in person particularly stressful but when I was waiting for my UC decision, fit note in hand, I was allowed fortnightly phone appointments with my job coach.

Good luck

Atlas35

Thank you @judie I really appreciate that.
I'm glad to know that your MR was successful.
That gives me hope. If I am unsuccessful, I'm prepared to go to a tribunal and at the very least, I'll be able to ask citizens advice for help.

Re the UC appointments, in the beginning, I had to go to the job centre but then all my appointments with them since have been video calls. To be honest though, I struggle with anxiety but I feel more comfortable with a face to face interaction over a video call. I don't know why they make me more anxious. But either way they are difficult because I'm not in a position where I can look for more work.

Rachel_Scope

Hi @Atlas35. It seems you're getting some great support already but just wanted to share my own experience. I had to go all the way to tribunal. I scored 0 points at first, 4 on the MR and then was awarded PIP at the tribunal. I have anxiety and I must say that the tribunal was much nicer than I expected. I did mine via video call but you can do them face to face too. Hopefully you won't need to go to tribunal but don't worry if you do, you can still be awarded 😊

Atlas35

https://forum.scope.org.uk/discussion/comment/896755#Comment_896755

That gives me hope, thank you @Rachel_Scope 😊