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 don't have experience of PIP but I do have MS. Fortunately I have been treated and I don't have any symptoms but I am obviously aware of the nature of the condition and how it can affect people. I think it's perfectly reasonable to apply and see what they say. Good luck OP

apply.

the process is not easy (you’ll need to set time aside for it, and pull together medical records etc in advance) but it’s for people with disabilities.

i didn’t apply for ten years because I was worried about what people thought.

Please apply. Make sure all the things you have to help with are mentioned. Mention that if you do xyz you then have to recover for two days etc. Be prepared to appeal the initial decision.

Read the criteria and see how you might fit them. If you can cook a meal you don’t score points in that criteria and you are suggesting that less work will make you more able to do that. If you put that to them in an assessment you won’t score a single point. I think you need to have a good understanding of the system and the actual criteria, and what is within ‘scope’ of that criteria before attempting to fill out an application.

Here is the Government web page which is helpful to understand what qualifies and what does not. It is really helpful to talk to somebody in person who has applied or who has helped someone apply - for example a social worker or a Citizens Advice helper. The mobility criteria are assessed in the simplest way possible and you will be asked how far you can walk and then asked to walk down a corridor to show the assessor. Note that when they say "unaided" they mean without a wheelchair for example.

https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

Thank you. I think the fear is really that if I can go to the gym or play badminton twice a week, I’m not eligible for the higher rate payments (and then I’d be living in fear about fraud!) But equally my neurologist has told me that exercise is crucial and I absolutely couldn’t manage it if I was doing everything else too.

The PIP form is quite straight forward can you care for yourself independently ie,wash dress etc or do you need assitance ?
Can you make yourself a bssic a meal and this can be as basic as a microwave meal or sandwich independently or do you need assistnce
Can
Do you need assistance walking ( i think its 20 metres?) Or can you do this indendently
Can you plan and under take a journey indepently from A to B ?
If you can do all of this you are unlikely to get an award
You will need robust evidence to back up your claim.

Sorry i meant to quote the Op.

You won’t get standard never mind enhanced if you can do that. There is no way you can evidence not being able to wash/dress/toilet/cook/take meds etc if you are able to go to the gym you are seen as able to do these very basic tasks.

This is exactly it. If I wrote it from the perspective of my worst days, I think I’d score points. But on good days (and without working 9-5) I absolutely can do everything on that list.

The key thing for you is how often you are unable to do the standard activities and the impact of doing them in terms of pain/fatigue etc. The site pipinfo.net is useful in breaking down what the criteria are.

This is not strictly true. It's nuanced. The fact you are holding down a full time job and going to the gym etc may be used against you but it's not an outright bar. Have a look at the site I linked.

It’s not helpful people commenting things like if you can go to the gym.

i’m disabled. I use a wheelchair and can’t walk. I go to the gym and have a PT I also do lots of swimming. I get high rate PIP.

seriously peeps exercise is very important for lots of people with disabilities and because someone goes to a gym and is able to do (some) exercise isn’t an automatic no to pip.

It is helpful as quite often it can be the difference between an award and no award. People need to know this.

It absolutely will be used as ‘of course you can do X/Y/Z’ if you can do that. The system is completely unfair. It helps no one to pretend otherwise.

In terms of good days and bad days if you have more bad days than good days you will score points.
Also think of it this way - a person without your health conditions would be able to work, then go to the gym, then come home and cook dinner etc. You can't.

I'm not saying you will get PIP. I think from what you say it's unlikely you'll get enhanced rate but it's not impossible that you would get standard. Maybe speak to Citizens Advice of another welfare benefits charity. They can go through the criteria with you.

In my professional opinion, you've got absolutely no chance of getting PIP.

That's not true. I worked in the field and it's absolutely the case that people holding down full time jobs and going to the gym can get PIP. It's harder but not impossible.

This is actually the case for a lot of working people though, unfortunately we have to prioritise work over other activities…

Ah, ok, I’m not here to argue with someone who knows someone who gets PIP and works full time whilst being a gym goer.

The truth is the DWP will use everything and anything to not award points on a PIP assessment, we all know people in these circumstances who did get awarded but let’s be real, the vast majority don’t. It can be dependant on how you approach the questions and assessment, and I don’t think there is anything wrong with me warning OP to arm herself with information.

Im the messenger, not the enemy.

I was just thinking this. There are so many things I wish I had the time/energy to do, but I have to prioritise work and exercise (for my health). However I don’t have a MS diagnosis and OP does, so I think it’s worth OP applying as her not being able do things like socialise with friends or cook will be viewed in the context of her condition.

It’s worth applying and seeing what they say

My son was a wheelchair user but on one occcasion we were stuck in the underground and he hopped out of his wheelchair and crawled up the stairs. The mobility descriptors are assessed "reasonably" so this would not be an exception they would consider.

In addition the above scenario would probably qualify in the "planning a journey" descriptor because planning a journey for a wheelchair user on the tube is tricky and if there are building works which modify the route which are not obvious from the map used for the plan that is how the scenario above came about. (we had to get a taxi eventually)

I’m sorry but I don’t think you should get it. It’s for the expenses of buying a wheelchair, extra electricity bills for running machinery, not so that you can work part time.

I totally get this, and I suppose that’s what I’m really asking.

I think I'm struggling to distinguish between the normal compromises everyone makes around work and the additional compromises I'm making because of my MS. I don't know whether I'm just expecting too much from life or whether I'm accepting a situation that I don't necessarily have to accept, if that makes sense.