PIP - nil points

[Nilpointnellie]

Hi there

I’m just wondering if anyone has any advice on my situation?

I have many chronic health conditions- Rheumatoid Arthritis, Reynauds Phenomomen, Hidradenetis Suppurativa, Anaphylaxis (it seems my immune system is basically faulty). I also have long term anxiety and depression plus various other chronic skin conditions. I have ongoing gynaecological issues. I have long term iron deficient anaemia.

Despite this, I work full time. My life consists of juggling various medical appointments with my Consultant Dermatologist, Consultant Rheumatologist, Gynaecologist, phlebotomist, GP, Psychiatrist and Psychologist.

I basically collapse with exhaustion each evening. I am in constant but varying degrees of pain. My mental health is fragile.

Despite this I scored nil points on the assessment. I think they see I am managing to work and think I’m ok. I’m not.

I worry every day about losing my job. My medical team have said I would be able to work for longer and have a better quality of life (pain wise) if I didn’t push myself too hard working full time.

The problem is I have children, the mortgage and bills don’t pay themselves, the CSA/Child Maintenance Options (or whatever they are called now) were useless, as my ex is Self Employed. I do however receive £50 month maintenance direct from him now but I still simply cannot afford to reduce my hours without receiving any PIP.

My various conditions do fluctuate and their impact varies - I was honest about this. Even on a good week, just juggling the appointments takes ages and causes stress.

I am very worried that unless I reduce my hours I will literally sieze up or have a mental breakdown and be unable to work full stop.

Any thoughts on whether I should get any PIP?

I stupidly did not request a mandatory reconsideration and it will be too late now but I’m thinking of submitting a new claim.

Thanks in advance if you read this epic, moany post.

PIP is concerned with a set of descriptors, not diagnoses. Have you looked at them and identified which apply?

Have you submitted evidence from the various clinicians you see? This is important, they rarely request it themselves.

When was your claim refused? You may be able to make a late appeal.

Yes I submitted copies of all medical evidence.

I thought I made it clear on the form how the conditions impact upon me, what I can and can’t do. How they fluctuate.

I also told the assessor.

It was months ago, maybe even a year.

Thank you for taking the time to respond.

Thanks for response.

I guess I’m wondering if anyone else managed to get anything whilst working full time?

Definitely go for a mandatory reconsideration, but also ask for a copy of the assessor's report at the same time.
The report for my dc was a sheer work of fiction, and when we asked for a mandatory reconsideration dc got a much more sensible decision.
(I had to write a very lengthy letter, quoting the report, addressing each decision as to why it was wrong. Even though they had been made an award, it was changed.)
It's rubbish, and very stressful, but don't give up.

People do get awards whilst working.

If it's over a year forget a mandatory reconsideration. If it's less you can request a late one if you have good grounds for not doing so earlier.

Which descriptors do you believe apply to you?

Ok thanks.

So I’ll submit a new claim...get reassessed, it will likely be rejected them I’ll request a MR.

If you're making a new application make sure you get help with it from CAB or a charity that understands your conditions.

I’ll have to come back to the thread re descriptors as about to put my children
to bed.

PIP isn't concerned with diagnoses but what you can do and how your illness/disability affects you.

Although you have a lot of diagnoses that likely make your life miserable in a lot of ways, none of them are blatant ones that make it leap out 'definitely needs care component of PIP' for example, especially as you are managing to work. You may well have anaphylaxis but if you don't have attacks and manage this by avoiding triggers and carrying an Epipen, you won't get PIP for it.

The key factors you describe are fatigue, pain, mental health. You may also be having to do things to do with your Raynauds and skin conditions in the day. So in the sections about 'Managing Treatment' you can put in how many appointments you have, if the treatments are difficult for you to do, how much time you have to spend doing physio everyday, how much help you need from other people. And so on.

The guide on filling out PIP forms is from the MS Trust and obvs designed for people with MS but v clear about what they are looking for and probably correlates reasonably well to the main sorts of disability that you can write about on your form.

www.mssociety.org.uk/sites/default/files/PIP%20-%20A%20guide%20to%20completing%20the%20How%20your%20disability....pdf

With fluctuating conditions you need to emphasise that you need help half of the time or more. Good advice from PP about reconsideration and the 13 month absolute deadline.

It is possible to getPIP while working full time but is not as easy. At the times when you need help with things like washing or dressing or have poor mobility can you work? If you can't you need to very clear about that. If you can work you will need to explain what the difference is between your ability to work and the problems you have walking/looking after yourself or there seems a mismatch.

If you have children and you get your children to do things for you eg open lids, carry stuff this would count as 'someone helping you'.

PIP is very focussed on things you need someone else to help you with.

The MS Trust idea of spending a month keeping a diary before you even start filling out the form is a good one.

I'd visit CAB and get them to help you complete the form. Identify the descriptors where you'll score the points and focus on those.

Don't let the bastards grind you down!

Thanks all. It means a lot.

I can’t go through all the descriptors now as my youngest is still awake.

My eldest does have to help me open jars etc. The Occupational Therapist gave me some sticky grip things which do help, but on a bad day I just can’t do them.

It takes a couple of hours for the stiffness to go upon waking. So although I’m shattered I always have to get up early. There have been lots of occasions when I simply haven’t been able to get out of bed and have had to enlist family to help me go to the toilet, get dressed. Other days I’m fine.

Most days I can drive , sometimes I can’t - I had to change my manual for an automatic.

Sometimes I can clean the whole house and manage, other days I struggle to lift a pan and cook a meal.

The only reason I’ve kept my job is because my manager is supportive and I have flexible working. I can postpone things when I’m ill and do them of an evening or weekend when I feel better. I work from home half of the week to cut down on the commute etc.

Although this is great, it also means I lose my free time, my time to recover/relax/do chores/see family as I’m constantly making up my hours.

When I can’t cook full meals I can feed the children takeaway/ready meals. I then don’t bother for myself due to risk of anaphylaxis. Sometimes I do batch cook and it does help.

I struggle carrying things - I get most shopping delivered to the house. I do try to be creative to avoid causing myself additional problems.

I incur lots of expenses at the hospital - they have different clinic days and many are at different hospitals so I can’t be too clever about scheduling appointments all on one day etc. Hospital parking is pricey. I then make up the time I have missed from work ..I’m sure legally I prob wouldn’t have too, but work have been so good and I don’t want to take the piss.

Apart from the Reynsauds and RA being painful and debilitating, when the HS flares up it can make wearing clothes painful, it’s painful to sit down etc.

I have loads of side effects from the various medications, nausea, sweats, hair loss.

The OT recommended getting a cleaner and either paying someone to mow the lawn when needed, swapping to artificial grass or getting a petrol lawn mower to make it an easier job. All these things cost money I don’t have. I’ve practically stopped ironing as it leaves me in agony as well as being boring.

There’s loads of things that i struggle to do. I’ve had periods signed off work when I’m really incapacitated.

I already had fluctusting mental health but the illnesses and constant juggling don’t help. I stay active and use a gym a little bit, when I can but mostly use the sauna as the heat helps. Again this was on advice from the OT but costs money.

If I could drop my hours and /or afford a cleaner i just wouldn’t always be in so much pain.

The diary is a good idea and I will do that. However, my RA and Reynauds are much much worse over the winter or when it’s really cold, like now - whereas when it’s warmer my HS will flare up as it’s linked to sweat glands.

After my mental health appointments each week I am utterly fit for nothing yet need to get back to work. I try to schedule towards the end of the day but it’s not always possible.

The juggling is exhausting.

Under PIP even to get the low you do need help with basics like washing dressing and food prep. So if you do manage these with difficult they may have decided oh well she gets zero she copes. Zero points does suggest they didn’t listen at all. Least some points would be expected even if just below amount for an award.
Well worth applying again if it’s been a while. When did you last have assesment? On the self assement how many points do you feel you should get?

That's a huge amount you've listed with a lot of help from other people.

I wonder if you also oversold what you can do on the form - so on the section about making a meal, clearly there are days when you can't chop things, lift pans, kids need to help, food choices are v limited by health conditions etc. However you might have mentioned a lot about that being temporary and on a good day you can do the lot.

The diary might open your eyes as to what you can really do and stop you doing yourself down on the form.

For what it's worth I've recently had to fill in a headache diary. After years of telling people my migraines are 'not that bad' it turns out last month I had them on 22 days out of 28 You can't argue with hard facts rather than guesses.

22/28? How are you not dead. Greatest sympathies !

Thanks Akire. Fingers crossed this month I'm down to 3 out of 7 days. I'm hoping it's a downward trend

From what I have seen you need to describe your conditions on the worst of days leave out anything about the good days and how your conditions fluctuate. Bad day descriptions only.

Good luck

Maybe I did state I can do too much - problem is, I don’t have much choice so I just push myself as much as I can and then other times I can do sod all. I honestly thought I laid it all on the line ...I did look at some disability websites before/ when filing in the forms.

Pissing yourself in bed when you can’t get the toilet didn’t even get a single point. Think that was my lowest point.

I have to let my children stay with family relatively frequently as I can’t always manage.

I have migraines too. They’ve been much better lately, I feel sorry for whoever has headaches 22/28 days.

Although I’m getting along now, albeit with difficulty i just don’t know how long I can maintain it for, I’m not getting any younger.

To whoever asked (I can’t do links) - I can’t remember when I applied. I have that much going on I forget simple things. I stupidly threw all the letters etc away when I was declined as was pissed off.

I’ll ring tomorrow and if I can get any information to say it was within 13 months I’ll ask for MR, if not, I’ll make a new claim and will take all advice from this thread into consideration.

Thank you all.

I also didn’t want to lie - some days I’m ok after the initial morning stiffness and could cook a 4 course meal with ease.

If I said worst case scenarios then that would never fit with working. Problem is, if something doesn’t change I genuinely won’t be fit for working at all. Losing our home is what frightens me the most.

I got contience nurse involved as I found it hard to get out bed to chair every time needed go to the loo. I got pads so think it helps if you ask help and it’s documented by others. I know it’s awful thing to have do but changing pad when you can get up is miles better than trying sort or wait until someone else can give you a clean bed. That alone should give you 8 points of not more. Don’t have points to hand.

Might be worth asking for care assement from SS you should get support based on what you can do not what benefits you get. So if
You say half the time you really struggle cook for yourself and kids they should intheory give you an assement. You may have to be means tested for support but again all helps next time
You have an assement.

You can apply if you have significant more needs than last time. Not sure if they have a mim length of time before you can.

If you use bad day descriptions only you'll end up contradicting yourself as a bad day would be a day you are unable to work.
You can be honest about fluctuating conditions as long as you are very clear about what things are like when it's bad and what things are like when it's good - but most importantly, how often you have good and bad days. It has to affect you MOST of the time.
Please get help to complete the forms. The way you have described things should qualify, but it won't the way you have worded it.

Pissing yourself in bed when you can’t get the toilet didn’t even get a single point. Think that was my lowest point.
It's inhumane and horrific but the severity of the condition is irrelevant if it doesn't affect you at least 50% of the time.
You would probably be better off if you were able to say that you always need handrails or a raised seat to be able to use the toilet.

I ‘only’ wet myself once, so sorry if I made that sound worse and apologies to the poster who does need the incontinence clinic if I came across as flippant.
I know I’m luckier than most as I do work and do have a good employer. It’s the worry about what will happen when I no longer can.

I will definitely keep a diary (I might get a surprise like the poster above with the headaches did) and I will definitely get someone experienced to help me complete the forms.

Thanks all. I feel better just getting it off my chest. I know there are people far worse off than me and they don’t get anything either. The system is shit.