I am looking for help or advice regarding UC

To explain

Our Daughter (31) was born with Arthrogryposis multiplex congenita, (AMC) affecting all four limbs
For all of her life we have been 24/7/365 unpaid carers on income support and carers allowance, i do driving and lifting ect as i can taking Emma where she needs to go shopping appointments back and forward to our home or just being there for her ,my wife does the girly stuff not appropriate for me to do, it is a joint effort

5 years ago Emma gave birth to our granddaughter and her and her partner lived with us ,But just before lockdown she moved with her partner to her new home 30 miles away i knew this was a mistake but she so desperately wanted her independence and to feel normal but now she realises that was a mistake and is trying to move closer but that could be years
At that time, we gave up carers allowance as we were no longer met the 35-hour threshold but were doing about 20+hours
however, because we were still providing ongoing and substantial care, Income support allowed us to stay on that benefit and issued a letter to that effect

we tried to manage, but as we lost housing benefit + carers allowance we were struggling and was advised we should claim UC

I did talk to the UC people and explained about our ongoing commitments and showed them the letter from Income support and explained, that we had not claimed it previously, as we were worried about how the work commitments and the ongoing care would affect our ability to provide the care/supervision we were still doing, with the added threat of sanctions hanging over our heads if we failed to comply.
we were assured given our situation that it would be taken in to account and or commitments would take account of this. And we were likely to be put on the limited availability for work list.so, we were forced by circumstance to come off income support and claim UC.

During the height of the pandemic, we were contacted about once a month to see how we were getting on and it seemed they were keeping to their word although we were not on the limited capability for work section.

we where married when she was 19 she is now 53 but has no skills or training other than being a mother, housewife and unpaid carer and suffers from a skin condition that means she has to apply steroids to her hands, she also has feet issues
They what her to look for part time cleaning jobs of 5 hours a week minimum wage or more with in 45 mins travelling distance and have said if her hands are a issue she can wear gloves likely supplied by a perspective employer

if indeed she could find a part time job that fits around or caring responsibility’s at minimum wage £8.91 she would be earning £44.55 and although our NI is being paid with the carers credit we still receive, and unlikely to reach the tax threshold our Uc would be reduced by 63p for every pound meaning she would only be getting (in real terms ) £15 and that’s not taking in to account the added undefined travel costs.

it was my understanding that slavery was abolished in the Uk in 1833 but this situation if she could find such a Job basically amounts to slavery to satisfy UC .

i myself am not free from issues, at 59 years old i have arthritis in both hips and may need hip replacements in the future, and can only walk about 150m without increasing pain and have weak muscles in my arms due to statins and am on tablets because of high blood pressure cause by stress i was on these medications to lower my cholesterol and to help my high BP.

For over 30 years we have been unpaid care providers like many others in our situation saving the public purse untold millions, but now for the sake of 15 hours less in our caring we are under increasing stress and worry over the fear of sanctions because we can’t find work that fits around our ongoing and substantial care we still provide.
The hours we do with Emma often go up to 30 and sure we could lie and say 35 hours but sometimes its less and i do not feel comfortable lying, but even if it was 35 hours and we claimed CA the result is Emma would have money deducted from her PIP and would mean she would be in a worse of position financially and i can’t do that to my daughter who has more than enough challenges in life as it is

My wife is often in tears because of the worry and stress we are under and the compounded need to satisfy these admittedly light commitments i don’t fair much better and am constantly sleepless from the pain i am in and i am writing this at 5:30 in the morning because the stress and worry just keeps running in my head over the fear of sanctions meeting these commitments and having our Uc sanctioned
keeps me awake
why we have to be contacted twice a month and explain our self’s and what we are doing to find work is demeaning ,my daughter is not going to get better and we will be providing care and support as long as we live.we have to be available to go through at a moments notice in case she falls or needs some other help

I have tried my best to explain the circumstances we are facing and the fear and worry’s we have but i am dyslexic and have trouble putting word to “paper” (so please excuse spelling and grammar errors) looking after a disabled person is a stressful thing to do, but we coped but this added work commitment for so little hours just add to that and leaves little time to relax and charge our batterys and as a result out health is suffering my Bp is high and i am suffering knight sweats with the pain i am in, i cant sleep

I don’t think the work coach really cares about our situation and feel he is just looking for a reason to sanction us or maybe thats just me worrying to much as i tend to do

during the pandemic we heard from him once a month “just to check in and see how we are doing” he said but now its once every two weeks and we are feeling badgered

we are at out wits end with the combined worry about our daughter and the threat of sanctions,now added to that we will loose the £20 UC uplift to UC because of the pandemic that amounts to £86 that will make a already financially strained situation even worse

i don’t know where to turn or what to do

Start by keeping a diary of EVERYTHING you do for Emma, every phone call, every little thing you buy. Do you feel “on call” all the time? Travelling hours too. These hours all count towards qualifying for Carers Allowance, not just the time you are with her. If you get CA you cannot be required to look for work. Your daughter should ask Social Services for a Needs Assessment, and you should have a Carers Assessment. Once the amount of care has been assessed, she can ask for Direct payments to pay your wife. Only one person can have CA.

I really feel for you, UC is a demeaning and horrible process for a pittance. Unfortunately it treats everyone the same regardless of circumstance and appears to have no flexibility.

Does your daughter’s partner work? She will be getting benefits for her child too. They have more money coming g in than you two do.

I honestly think you should keep a diary of all the support you give your daughter - I’m sure it’s probably more than you realise. It includes, emotional support (telephone calls), errands, paperwork etc

I realise you don’t want her to have money deducted from her PIP but -not claiming carers allowance and all the stress you are both under is not something she would want for you either.

You have both devoted your lives to looking after her - and it sounds like you did a great job - she has a partner and a child and a home of her own. I’m sure she’d rather you claimed Carers and were less stressed and able to carry on supporting her than you both became ill due to stress and lack of sleep.


PS have you tried claiming PIP for yourself due to your mobility issues?

Well can i just say Thanks to ALL
i think this advice has solved the problem (i think)

See i did not know phone calls counted towards the hours of care

See the thing is, i am pretty much a technology Geek and computer engineer and have been for the past 35 years and as such gained a lot of equipment or had it bought for Emma so she could just speak commands to open windows,turn lights on and off ,control radiators ect ect

if i could connect it to my server, or smart hub we had it ,our home is filled with what you could call adaptive technology,

At her new home we where building the same kind of thing Among that is a Amazon Portal that we use to see her and contact her every day,multiple times a day, especially when we are not there in person
I have never added it up but its got to be a least 20 hrs a week or more,add that to the days we go out to her home + the 30 mins there and 30mins back in travelling time (something else i did not consider as she always lived with us ) we blow “35” hours out of the water :smiley:

So my only worry is if they can make us claim Carers Allowance because that would affect her income
and i wont do that

Yes he works ,he is a good lad but he doesn’t make a great deal

We do ok, we are not rich by any any meens, we just about scrape by and we are content
But i am a resourceful guy, and i fix or build the odd computer here and there and attract broken electronics and computers that i fix and make “pin” money or sell on its not regular and strangely often happens when we need it the most.

Thank you i am happy and proud the way my kids are

i have a 35 year old son he lives with us works from home,6f5
Bigger geek and more qualified computer engineer than i am, who works from home as a Amin for a big

(bit of a bragg here)

was promoted from on-line/phone customer support within 3 months of getting the job, to head of his department
By the end of his second year he was promoted to system Admin, and then 6 months later the CEO of the company promoted him to his direct Admin with his picture on the company web site ,in charge of 5 country’s support
he has Never been in trouble for Anything (well maybe keeping his room tidy) and is as kind and thoughtful as i could want .

Despite her disadvantages is strong woman she takes no crap from anybody,official or not,she is a chip of the old block and a good mother,Bit strict some times but that’s the granddad in me talking :unamused: :smiley:

And i could not bring my self to re-apply for carers allowance she needs it more than we do

But thanks

I would just like to thank all for the direct advice and thoughts but also from posts from the whole site, it was unbelievably helpfully .

So just a quick update …its done,fin,over

Not only are we both now in group 4 UC as having caring duty’s and not required to look for work
And we had it backdated for almost 2 years, :open_mouth: and may get compensation :open_mouth: :open_mouth:

It has certainly been a experience with a steep learning curve and i have learned a lot ,Some weird stuff ,Some good personal stuff ,some Benefit stuff
Ant the site was a great help with that


Sounds like a result, Andrew.

Very pleased for you.


I’m so glad it’s worked out for you so well.
Now you can help others with your knowledge.
I learned far more from other carers than I ever did from officials.
I once met a couple with a Down’s syndrome son who didn’t know they could have any relevant benefits for over 20 years!!! I often ask people here about benefits, not to be nosy, just check they know their entitlements.