To think about claiming PIP in these circumstances?

[ATenFromShirley]

I’ve NCd for this. I’m looking for some honest thoughts and opinions that I probably won’t get in real life.

I’m 34 and have MS. I tend to look ok (not to myself, but as in, you probably wouldn’t guess to look at me apart from on a very bad day). Lots of my symptoms are invisible: balance, muscle spasms, numbness, dizziness, and the worst of them all, fatigue.

I live with my parents, and I work full time. My parents do SO much for me, they do the food shop and all of the housework. I do pay my way (a third of everything, and a bit extra). I go to work, exercise twice a week and then crash at the weekends. I often won’t leave the sofa because I’m so exhausted. If I try to see friends etc, I’m done in for the next working week too. I truly can’t explain what the fatigue feels like- I’m so bone tired and brain foggy I’m tearful at the thought of another day ahead, even after nine hours sleep.

I desperately want to buy a house and have some independence, but I really can’t envisage being able to work full time and then do all of the life stuff that my parents currently are basically doing for me. I’ve realised I probably will never be able to have children (a whole other heartbreak in itself).

The thought of my life being as it is forever terrifies me. I feel like if I could work 3 days a week, I could still have 2 days for rest and be able to manage things like cooking and housework. But to do this financially, I’d have to look at PIP.

I think part of what makes this difficult is that I probably don't fit the stereotypical picture of someone who needs disability benefits. I work full time, I exercise twice a week, I look relatively well most of the time. I can do things, and I recognise that there are people with MS who are much more physically affected than I am.
But I also spend most of my non-working time recovering from the basics, and I rely heavily on my parents to do the things that make everyday life function.

I feel a bit stuck between two things. I don't feel disabled enough to justify asking for support, but I also know that I just can’t continue living like this indefinitely. I don't want to spend the next 30 years working full time, coming home exhausted and spending my weekends recovering. I want a home, independence, relationships, experiences and a life that isn't entirely dictated by how much energy I have left.

I suppose I'm asking whether reducing my working hours and potentially claiming PIP is a reasonable way of approaching this, or whether I'm being unrealistic and actually this is just what my life is going to look like. I also recognise that lots of people are exhausted from full time work!

I'd really appreciate honest opinions- I genuinely want to hear how other people see this, even if it's not necessarily what I want to hear. Thank you.

I agree it's an absolutely shit system. I work in benefits advice for cancer patients and they have so many extra costs, travelling miles to regional centres etc for treatment multiple times a week in some cases but many still won't qualify because they don't fit into strict criteria that PIP says they have to. The LCWRA element of Universal credit being halved has made thing even worse. I despair of the system.

Do apply. I have a very good friend who is earning circa £60k but was awarded PIP. She lives in constant pain and like you is exhausted a lot of the time. She was surprised but relieved and grateful to get it. Meant she could an automatic car to make her journey to work more comfortable.

I understand this point but the other tasks I’m prioritising are work and exercise… so where do I cut? At the moment I’m getting by because other people are doing things for me and that’s not sustainable long term

It’s literally not for that. It can be used for that but not necessarily. Why do you think many people with no mobility issues get it?

Hello OP. Yes you should make a claim. You lose nothing by doing so
What I will say is you need someone to help you fill in the claim form, either a specialist charity, CAB, or a carers centre.

MS Society have online info, search MS Society PIP claim help - info & advice, local branch details and a telephone help & advice
Your local CAB will have claim appointments and are well trained and very helpful. Long wait for appointments
Your parents should register with your local carers centre, some of whom offer PIP claim help.

OP you are living with the condition, but as such you don't realise the full extent of the adjustments you make every day to not even live what most of us would describe as a full or normal life
CAB etc are so good at explaining what the questions mean - such as "so for example on your worst days, would you struggle with x, or y, it z. Tell me how you would get out of bed, " etc etc.

Good luck OP, you deserve it. Sounds like you really aren't coping with full time work. It's important for you not to be that physically and mentally stressed to work full time that your non working time and your illness is impacted xxx

@Passaggressfedup

It’s important to remember Pip is an in work benefit. You don’t need to not work to not get it. The system should not be penalising people for doing their best to work. It should encourage work rather than use work as a “gotcha”, because remember another person with Ops conditions living in rented accommodation could give up work altogether and sign on to UC and be claiming more via that if their going to use work against them!

If you @ATenFromShirley are working and doing medically recommended exercise (as opposed to say optional extreme sport) and still have difficulties doing various living tasks it’s absolutely possible and fair that you might score enough points to qualify for PIP

OP - definitely apply. This is nonsense. Don't listen to people who say you will/won't get it. You can only know that if you apply and go through the assessment.

I also have MS, and two other conditions. I exercise (like you said, it's essential and my physio and neurologist both say that maintaining function is non-negotiable) and I work part time. I still get PIP even though I'd say I'm quite fit for someone with my level of disability. In my case, I get fatigue, have damaged eyesight from optic nerve damage, and use adaptations around the house to cope with bathing, toileting, cooking, and taking medication. I don't get the mobility component because I only scored 4 on that.

The points accumulate across a lot of categories, so you will need to be impaired across quite a few aspects of self care to qualify.

Remember that even Paralympic athletes can qualify for PIP.

You need to consider how many worse and how many better days you have. If it's 50/50, then definitely apply. I imagine a lot of people with fatigue would feel much better if they didn't have to work. Nonetheless, they do have to and PIP should take it into account as it is non means tested benefit.
As it stands at the moment, you rely on help with basic ADLS. Exercise and work are not part of PIP assessment.

I’ve got a ME/CFS. The symptoms are very similar to yours. I get PIP, so I would apply in your shoes.

i would warn you that It is very important to learn how to fill in the form for fluctuating conditions. To learn that, I did the training course on the Benefits and Work website. I applied twice. The first time, I didn’t know what I was doing and didn’t fill out the form very well and got 0 points. (Even though I got help from a well-known charity- they did not advise me well). For the second application, I did the course and therefore put the right information in the form and got awarded. I also went through every single claim on my form and ensured it was backed up in my evidence. On the form, I also quoted my evidence, like in an English Lit essay. If I found something wasn’t covered in my evidence, I got someone to write me a letter of support to include whatever was missing. My manager’s manager wrote me an excellent letter of support.

I would caveat all this with, at the time of my first application, I was working 10 hours a week. The assessor thought I was waiting tables in a cafe - I wasn’t - I was sitting at the till. However, they said that my job proved I didn’t have fatigue to the level I said I did and I could walk more than I said I could . By the time I reapplied, I had had 10 months off work within a year due to relapses, so they could no longer use those arguments.

Please apply for it, go to CAB and ask for their help in completing the form in.

Great advice.

Your parents are providing support for you over and above what would be required for the average 34 year old but are not even able to claim CA. I think you need to complete the assessment as if you received no support from your parents as the payment is meant to enable personal independence to enable you to support yourself in your own home and after your parents are too old or infirm or no longer here to give free support.

atm you don’t need prompting or physical assistance to eat because your parents do the food shop and cook a meal for you. What would it look like if they didn’t?

For some unknown reason PIP descriptors do not directly relate to the ability to actually shop for food or the ability to do laundry or cleaning or basic household maintenance and gardening. Difficulties with performing these tasks has to be woven into other descriptors. And/or support received from the LA following adult care assessment.

I think the entire system has become a joke and PIP and benefits need to be massively reduced but that said, I wouldn’t judge you personally for applying in your circumstances. I don’t think it should be available in all but extreme cases but if you meet the criteria and are entitled under the current system then why not make your life more enjoyable and easier, as you say others are taking advantage of this so you may as well try. I work 60 hour weeks and have two young kids and I have no time for exercise or a social life so part of me feels well that’s just life, but objectively I can understand that your life must be so much harder than mine so I wouldn’t begrudge you what you’re entitled to even if I don’t agree with the system itself.

Sound tough, OP. Can you speak your employer? When I was struggling with some form of ME/chronic fatigue I reduced my hours at work from 36 hrs to 31 hours. It made a huge difference to get away an hour earlier, which also reduced the journey time home as the bus was quieter. What I lost in pay was mostly offset by paying less tax.

It's hard to see how you would qualify from what you have said as it relies on you not being able to do specific things such as mobilise, getting dressed, bathing etc You could try doing the PIP test from this link and see though https://benefitsandwork.co.uk/personal-independence-payment-pip/pip-self-test

You absolutely deserve it

you have almost no life outside of working full time 😟

I think you should claim .TBH There are a lot of people around who dont have a physical disability at all ,and still seem to get away with not working ! You have a FT job ,manage to play some sport ,and are a useful member of society .Try not to worry about the future too much,take 1 day at a time .I have ovarian cancer and have done 2 courses of chemo.Still need checks .

Just to add a positive, I applied a few years ago without assistance. I get it for MH. I was awarded it right away with no appeal and had no interview either. It may have been easier as it was round Covid I think so they couldn’t do face to face interviews but I didn’t have a phone one either.

Go ahead and apply but answer honestly and based on a typical day - not your worst day. So explain that you can cook a meal and work and basically live a normal life but get tired. If you get awarded it by answering honestly then fine.

Do not lie or exaggerate to claim points. That is fraud and theft and you are better than that.

That's not how it works and I say that as someone who's had MS for about 30 years.

Definitely worth applying. You need to consider all the support required to manage your everyday life, which your parents currently do but you might need to pay for in future if you moved out or they were unable. It is about more than just being worn out by a ft working week. Having said that PIP is not a large amount even at higher rate so I would be doubtful you could reduce your hours significantly as a result. If you were successful it might be better to use it to be more independent by paying for support as a stepping stone to moving on.

Agree. PIP is awarded based on how you are on the majority of days and in my experience PIP assessors are very good at establishing how many days apply. I think they have to look at it over a year to establish whether you meet the criteria to score points for 50% of the time. This is to capture how fluctuating conditions affect people when people have flare ups .However one of the outcomes of the Timms report is that PIP doesn't adequately capture how people with fluctuating conditions are affected so I imagine there will be changes in this area, possibly in the way PIP is assessed.

This reply is misleading, as it is if you can do those things consistently, reliably and safely more than 50% of the time.
I can technically cook for myself, wash myself, walk. But if I did all those things every day, by day 2 I wouldn’t be able to do them due to pem.
it isn’t as cut and dry as it sounds.

That would be my son hes physically very able can walk for miles
But at 16 he is severley autistic with severe learning disabillties cannot talk at all has the understanding of a toddler.
Hes not " getting away with anything".

I don’t think you’ll qualify at all if you’re able to go to the gym and do things like cook for yourself. I am friends with someone who has kidney failure, is on dialysis 3 times a week and struggles a lot with fatigue but is still somewhat active (nothing in comparison to what they were like before) and can cook themselves, shower etc and they were rejected even after appeal from basic rate. Seemed really unfair as she’s really struggling and very overwhelmed with it all, she was hoping to be able to get a cleaner in etc to make life a bit more manageable.