Rachel Adam-Smith
@RachelAdamSmith
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Following
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Statuses
6,275
Mum & carer. Original “Mustard patient”. Powered by batteries #CHD ❤️. Ex cabin crew. Law graduate. Disability Campaigner. Views mine 📸dogs mine 🐾
Yorkshire and The Humber, England
Joined December 2021
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“No breaks, annual leave, sick leave, or uninterrupted rest periods. We are expected to carry on, day after day, with little or no sleep. That’s why many carers don’t need alarm clocks – because their shifts never end”
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Unpaid carers don’t go out to work. We stay at home
@trussliz
working incredibly hard, working 24 shifts, every day of the year. Many can’t better ourselves. Many would like to create a better life, many can’t but are reliant on a measly allowance of £69.70 a week!
136
1K
3K
Why are we taxed on carers allowance, presumably because it’s seen as income. If it’s seen as income why isn’t it seen as a wage? To get carers allowance we must care for our relative 35 hours a week. That’s a full time job but we are paid less than £1.99 an hour.
60
481
1K
Carers allowance is £3,991 a year
Carers earn less than £11 per day
The living wage is £10.18 an hour
A direct payment carer doing the same job will get paid this hourly rate or more but the relative whose doing the same job won’t.
Instead, they’ll be forced into poverty🧵
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794
On Christmas Day I’ll be working as an unpaid carer. I will be on call all night . If I’m not woken during the night then I’ll be on duty from approx 7 am to 11 pm & then, into the next night. As an unpaid carer, I’ve no guarantee of a break during that day or any other day. 🧵
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706
A paid carer doing min 35 hrs a wk would receive £364.70. That’s 10.42 p/hr
Those carers given status unpaid (& all admin, advocacy etc.) receive £76.75. That’s £2.19 p/hr
Only, they don’t just do 35 hrs a week they often do 90 plus hrs a week. That’s 85 p/hr.
Why is this ok?
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544
TV in hospital has now cost me £40. I’m a full time carer to a young adult with LD. Apparently, a “freebie/grant” for free tv won’t be provided because “how do you define who qualifies”. Carers allowance is just over £70 a week by end of the week that will all be gone on the tv🧵
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Why does data protection not apply to patients having to shout their date of birth and address through a perspex screen to a packed waiting room?
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If you are caring for a relative you should be paid carers allowance regardless as to whether you have another job, don’t have a job or are a student. If you didn’t do it, then the council would have far more costs in meeting needs.
#unpaidcarers
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450
Being a carer, quite often means giving up your career, your pension, your career progression. Being a carer goes beyond the normal "mum or dad" hours, or the normal "mum or dad" years of taking care of their child. A parent will always help their child regardless of their age 🧵
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Why are so many accessible apartments and bungalows being built for over 55s/over 60s only? Same thing as people assuming only those over a certain age require social care. People of all ages require social care and …accessible homes
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Has Chloe Smith MP,
@trussliz
@KwasiKwarteng
ever heard of
#unpaidcarers
. Do they realise that 11.5 million people are unpaid carers saving the Government £193 million. 640 people give up work every day to care for a relative. At £69.70 carers allowance is the lowest benefit🧶
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414
Attention really needs to be drawn to those unpaid carers working over 90 hours a week. It’s not made up. It’s a fact.
Think charities, tv programmes don’t illustrate what it’s like for those unpaid carers that can’t get out, can’t go for a walk, meet friends, can’t go to GP
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To qualify for a carers allowance of you must (in reality) give up your full time job and “care” aka “work” a minimum of 35 hours a week to get £69.70 (and it’s taxed). How do they get away with this? When they paid “professional carers” at least the minimum wage.
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For the entire time my daughter has been in hospital, no one has asked her where the pain is or was. A learning disability is not a medical diagnosis. Just because you have a learning disability and are non verbal - it does not mean you don’t feel pain.
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“Why are parents of disabled children always so isolated from the rest of society. Life as a carer to a disabled child is incredibly isolating. It’s 2023. It shouldn’t be”
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When a child with disabilities turns 20, their parent/carer is effectively sacked. From one month to the next, there is a massive drop in benefits. An unpaid carer has no way of making that money up. What changed? Only a number, not their disability or their 24 hour care needs.
A story about universal credit. This month F turned 20. I was receiving £880 child element & disability element plus child benefit. All that has gone. I received £151 instead (they deducted £50 as they state they overpaid me one month).🧶
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If tomorrow you had to advertise for a carer to fill your shoes what would the advert say?
👇🏻
*no one who was to be employed as a carer would ever be treated like this, so why are unpaid carers exempt ?
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A story about universal credit. This month F turned 20. I was receiving £880 child element & disability element plus child benefit. All that has gone. I received £151 instead (they deducted £50 as they state they overpaid me one month).🧶
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367
9 days into admission on adult ward for a teenager with LD. No play specialist, no kitchen, no playroom, no fish, no sensory room. Why is it acceptable for a young person with severe learning disabilities to be expected to tolerate this type of ward. Why nothing for them? 🧶
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Unpaid carers cannot plan their retirement as others do. For most, there is no retirement. And even when they reach retirement age and continue to care for their relative - they don’t get carers allowance. That’s wrong.
#unpaidcarers
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363
DWP is like the post office scandal all over again
Prosecute any slight overpayment/error.
Assess them incorrectly
Make them work when sick
Make them go through endless tribunals
Make them sicker than they were
Risk of suicide
Deaths as result
@RishiSunak
is the boss
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348
There’s caring & then there’s the endless paperwork, phone calls, emails, forms, chasing professionals who fail to do their job, tribunals, complaints, every single day. Unpaid carers have to find time to fit this role into their day. It detracts, it’s stressful & it’s unfair 🧶
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Unpaid carers have to work when they are poorly. Problem is the person they are caring for might not understand they are ill and still expect and need the same level of care. I’ve discovered that this morning. 🤦♀️😢
#unpaidcarers
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It’s this time of year all the “I’m on leave until the new year” start being sent back to you
But for an unpaid carer, there is no annual leave, no out of office, no days off, no time off in a 24 hour period, no guaranteed sleep,
Unpaid carers = unpaid but still working 24/7
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The difference between paid carer and unpaid carer isn’t just that they aren’t paid - an unpaid carer has no leave, no days off, no sick leave. They have no guaranteed break at all to even go to the loo
16
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327
If
#unpaidcarers
can only earn an extra £132 a week (if they are able), then you add that to the £69.70 of carers allowance & you’ve still got less than minimum wage a day (& taxed on it) carers allowance has to be increased, it’s leaving those who are caring in poverty
20
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Why is it carers allowance stops when you reach pension age? If you can continue to work in an employed job past pension age, then why shouldn’t you receive carers allowance if still caring? If you don’t care for them, someone has to.
@CarersUK
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How do we feel about this ? I thought one of the purposes of a disabled toilet is to be able to access it quickly dependent on medical condition. Queuing for this one didn’t make it easily accessible
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As an unpaid carer there seems to be a presumption you aren’t allowed or need “any other life”, other than caring.
Employers talk about “mental health” for their workers, be it, going to the gym, walking , spending time with family. But not for unpaid carers. 🧵
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302
“I’m now on leave, retuning on the 3rd January 2023” . ... “oh wait, silly me, I’m an
#unpaidcarer
”.
Happy Christmas to all unpaid carers who will be working as they do every day of the year 🎄🎄🎄
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What do
#unpaidcarers
do when their child is at college or school? Spend nearly the entire day catching up on admin. The amount of admin associated with being an unpaid carer is a full time job in itself.
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Has anyone heard any political party/MP mention anything in relation to improving the lives of those with disabilities and the lives of unpaid carers? Anything to do with carers allowance? Amount of hours unpaid carers work per week?
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Government: “We owe unpaid carers so much”
Me: “actually, you owe me approximately £360,000 to £400,000 in twenty years lost income”
#UnpaidCarers
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#MartinLewis
“If you’re a carer working over 35 hrs a wk you might be entitled to carers allowance of £67.60” - wish people would think how bad that is.
@MartinSLewis
why aren’t carers getting the minimum wage for their 35 hours a week. If they did they’d be earning £311.85 a wk
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When you are an unpaid carer working such an excessive amount of hours that you cannot possible get another job, you should feel financially secure. You should not feel worried how you are going to pay your energy bills or how you’ll afford a food shop.👇🏻
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284
Why do they keep putting DNR questions on hospital passports or GP reviews for those with LD. I was born with a chronic heart condition, i’m in hospital regularly but I’ve never been asked that question but my daughter who has a learning disability not life limiting condition has
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Unpaid carer = sacrifice career. Sacrifice pension. Sacrifice health. Sacrifice family. Sacrifice friends. Sacrifice earnings. Sacrifice sleep.
Unpaid carers = “you must find time to look after yourself”.
“Sure ok, that works for many on a 90 + hour week”
#Unpaidcarers
11
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267
One of the differences between being an unpaid carer & being a mum?
Take indoor soft play - mums/dads with non disabled children sit with friends/other mums chatting whilst children play. Unpaid carers don’t - they are on the play equipment all the time regardless of age
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264
Carers allowance hasn’t increased. UC hasn’t increased.
#unpaidcarers
cannot change their situation. They don’t get paid. They’ve no savings. What exactly are they meant to do? Turn the heating off? Not use essential medical equipment? Go into debt & never be able to clear it?
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259
Carer cancelled. My plans cancelled. Rest cancelled.
#unpaidcarers
happens to them all the time. And just like that they are back on shift.
How unpaid carers aren’t considered to be working is beyond me. If they are doing the same and more as a paid carer - they are working.
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You surely realise
@Jeremy_Hunt
that many are actually working as unpaid carers. They are in fact working very hard, often doing over 100 hrs a week,
more hrs than the majority of workers who are actually employed.
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Most people can choose to work hard, choose whether to save or spend
Not unpaid carers. They just work hard full stop. They can’t save. There’s nothing to save with an allowance of just £81.90 a wk. 47% work more than 90 hrs a wk. Yet, they are deemed as economically inactive🧵
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253
So many
#unpaidcarers
should be signed of sick due to exhaustion. If we went into the GPs as an employed worker we would be. But the reality is there’s no else to look after our relative. Instead the GP tells us “try to find time to look after yourself”🧵
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What about those young people who are young carers? They already volunteer - according to the government all unpaid carers are volunteers
12
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248
Wow! Offensive
@JeremyVineOn5
Do you realise many
#unpaidcarers
are working more hours than many who are in paid employment?
Do you realise you’re referring to severely disabled adults, who need life long support & have gone through extensive never ending assessments 🧶
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58
241
If unpaid carers are going to be prosecuted, who’s going to investigate the government for paying under the min wage to unpaid carers and loss of earnings for their life sacrifice? Saving them 168 billion a year and they are penny pinching. Who’s the criminal?
9
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244
Hands up all those unpaid carers that can’t get to exercise whether inside or outside due to their caring roles and excessive amount of hours the government leaves them to care a day?
The second week of
#CarersActiveApril
is here, and it's all about embracing the outdoors 🌻
Physical activity doesn't have to be vigorous or time-consuming to be good for you. Just spending ten minutes a day outside can provide a world of positive physical and mental benefits.
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245
Yet again carer cancelled. Unpaid carers rely on paid carers. Paid carers constantly let us down. Sure they think, “doesn’t matter, she’s there anyway”. It does matter because that unpaid carer had plans or needed sleep. When they don’t turn up the
#unpaidcarer
should be paid.
16
40
242
Think many unpaid carers find it impossible to switch off when their life revolves around caring 24/7. When you get a rest, you go into a feeling of shock from all you’ve dealt with for weeks, months or years on end & find it difficult to disengage from your caring role. 🪡
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37
239
Unpaid carers DAILY (not hourly) allowance = £13.94 based on five days a week.
Let’s not forget,
#UnpaidCarers
don’t get weekends off, so the DAILY (not hourly) amount is in fact £9.96. Less than a £1 an hour.
It’s classed as an income. They should be paid a wage
#EnergyCrisis
15
77
239
Imagine a world in which
#unpaidcarers
were paid.
@KwasiKwarteng
and
@trussliz
would then realise that unpaid carers are working more hours than they are legally allowed to do.
Unpaid carers should be supported by the government and recognised for the “work” they do.
6
66
233
Imagine if unpaid carers made a claim for loss of earnings.
This is about people who’ve given up their career for the rest of their life, sacrificed their own health, their own wishes to care for their relative.
It shouldn’t mean they’re left to it & forced into poverty
5
75
235
Unpaid carers remain in hospital caring for their relative, yet, aren’t entitled to carers allowance because the DWP thinks they’re being care for by the hospital. They aren’t.
“My wife had to stay 24/7 in the intensive care unit because my daughter was profoundly deaf”
Family of teenager who died after over a year in hospital told by DWP to pay back £8,000 in benefits.
Despite closing their shop and caring for her day in, day out in hospital, DWP rules meant they had to pay back carers allowance and
#UniversalCredit
.
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If the government did adverts for unpaid carers they might recognise the level of exploitation 👇🏻
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What’s the difference between being a mum & an unpaid carer?
At over 20 years old & non disabled - if she got up at 1 am, she’d be capable of looking after herself
At over 20 years old & with severe leaning disabilities, she isn’t capable.
It’s 1 am. She’s up. I’m up. 🪡
5
39
227
Carers allowance will be £81.90 p/wk
Based upon min hours required to claim carers allowance (35) that’s £2.34 p/hr - an increase of 15 p/hr
Min wage for paid carer will be £11.44. That means they’ll receive £400.40 a week. A £318.50 difference between a paid & unpaid carer🧵
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If
#unpaidcarers
were paid the minimum wage for the 168 hours a week they work, they’d be very wealthy people and not some of the poorest in society reliant on food banks, fundraising and grants
11
49
217
Often think parent carers of disabled children are victimised against simply because they are advocating for their child’s needs. Parent/ carers unfairly treated simply because they complain about the discrimination their children experience on a regular basis
16
39
217
Paid carer earns £83.86 doing one 8 hr shift based min wage
Unpaid carer has to do min 35 hrs before they get any payment, which is just £76.75. They don’t even earn in one wk what a paid carer does for one 8 hr shift.🧵
13
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217
No one ever said, “when I grow up, I dream of being an
#unpaidcarer
trying to survive on benefits whilst endlessly justifying our need for the essentials in life”.
#realcarersweek
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It’s not the fact you aren’t paid. It’s the fact many unpaid carers have to give up their entire career (pension also) and in its place (not always) is an allowance that doesn’t suffice in anyway to cover the cost of living.
🧵
10
30
212
Some professionals have this amazing ability to make
#unpaidcarers
feel like they are failing their relative, when in fact it’s the system thats failing them
7
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212
Whether paid or unpaid - no one should be expected to work 24 hours a day, to never have any guaranteed sleep or days off, no sick leave & no annual leave.
But the government expects unpaid carers to do just that, to sacrifice their own health every day because of their failures
3
59
211
Who determined that an unpaid carer was only worth an allowance of less than £11 a day for the work they do 7 days a week
@RishiSunak
?
Even if they did the min care work required of 35 hrs a week, that’s less than £2 an hr. Who worked this out
@RishiSunak
& thought it was fair?
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200
The system is totally unfair on those who commit their lives to caring for their relatives for no pay by this never ending need to justify their relatives disability.Leaving them anxious and terrified when they should feel supported
#universalcredit
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205
Carers uk often state, “if you are caring for someone, join our online coffee morning, online pilates but if I’m caring for someone how can I and others do that”. Think they are missing the point - many unpaid carers haven’t time to sleep or shower let alone anything else
13
36
204
When disabled toilets double up as baby change toilets they are not disabled toilets.
The point is being able to go to the toilet more quickly as well as the equipment that’s meant to be in the toilet - not standing in a queue behind lots of mums/dads needing to change baby 👩🦼
23
31
199
What does being an
#RealUnpaidCarer
mean for many on a Sunday?
No tea or coffee in bed
No reading a book, paper or watching morning TV.
No relaxing Sunday stroll
No Sunday lunch out
For unpaid carers it’s groundhog day over & over, for 5, 10, 20, 30, 40 years plus
12
43
201
I used to go to Christmas parties. I used to be part of a team. Now I’m my own team, HR, nursing, legal. There’s no Christmas party, no drinks after work. There’s often just me. I’m not classed as a worker, I don’t get any leave. I’m the
#unpaidcarer
, on call 24 hours a day.
8
44
199
Unpaid carers have to work at least 35 hours a day to get carers allowance.
That means they get £1.99 an hour.
How is that allowed? If you have to work at least 35 hours a week to qualify for carers allowance then you should be paid minimum wage for each of those hours 🧵
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199
If some unpaid carers have no time to continue our relationships or friendships with other people because of the sheer volume of hours they are expected to do each week, isn’t that an interference with our right to a private life? (Article 8).
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198
Non verbal does not mean don’t include. Non verbal does not mean don’t ask their wishes. Non verbal does not mean do as you please
5
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197
#Unpaidcarers
reality
*often no sleep 😴
*often no exercise 🚶🏻♀️🏃♀️
*often no shower/bath 🛀
*often no time for their own health 🩺
*often no time to 🛒
*sometimes no time to 🍲
*often no time to socialise 🍷
All the things that are needed to maintain physical & mental health
6
71
193
It will take you 28 hrs to pay for this cafe breakfast, as an unpaid carer working a 24 hour shift, as you only get 45 p an hr from carers allowance. If you’re a paid carer it will take you just over an hour to have enough money to pay for it
#Equality
#UnpaidCarers
#Costofliving
4
70
196
I’m a carer to a severely disabled child. She’s not suddenly got better. She’s just become an adult (who lacks capacity) but I’ve had to go through all these assessments. And today, I found out how much she’ll receive £265. That’s a drop of approx £559 in one month... 🧶
4
55
194
Parent/carers of learning disabled children are often made to feel like a failure by so called professionals. Yet, often, it is the so called professionals that are catastrophically failing the child,
yet, there never seems to be any consequences for them
#gaslighting
#SEN
15
41
191
You’d always think, or people you meet do that unpaid carers of disabled children would get as much support as possible from authorities. The opposite is true.
🧵
9
44
191
Everyone going on about Jacob Rhys-Mogg scrapping the working time directive (48 hours) and urging everyone to join a union, when
#unpaidcarers
have been left to work up to 168 hours a week, not even on a wage, with no holiday leave and no ones cared about them.
8
57
187
Government makes out those on benefits, e.g, unpaid carers & their relative, live a life of Riley. They want to swap benefit payments for vouchers, not trusting what they spend money on.
All they can spend money on, is energy costs, household expenditure, rent/mortgages & food🧵
8
62
193
Very lucky to have some time to myself with my mum. Important all unpaid carers have time to themselves, peace and time to breathe ❤️
8
5
189
There’s no such thing as respite or days off when you’re an unpaid carer. It’s totally different to being employed as a carer because when you’re employed you’ve guaranteed sleep time, guaranteed days off, guaranteed leave
Those things doesn’t exist when you’re an unpaid carer
10
45
187
Fish and chips at the local pub costs £4.04 more than an unpaid carer gets paid per day
Fish and chips £15
Unpaid carer £10.96 per day.
Cost of living increased (significantly).
Unpaid carers allowance hasn’t
11
86
187
One thing that struck a cord this morning when
@kategarraway
was speaking, was about having your head buried constantly in paperwork appealing for the latest tribunal, funding for care or equipment.🧵
5
26
188
@AdrianEdmondson
You sure it wasn’t a communication aid ? Or that he didn’t have autism and the device is a mechanism for coping. Your reaction is exactly the reason I’ve not dared taking my daughter to the theatre for years because of the judgment made by others which makes us feel unwelcome
8
6
186
Has there ever been a decent explanation as to why unpaid carers aren’t paid?
Why many have to give up their careers ?
Why many are forced into poverty?
Why being left to it 24/7 means the unpaid carers mental & physical health deteriorates?
Why such atrocious treatment?
32
58
186
Why are there not accessible homes being built in complexes similar to those for over 55s/60s?
These apartments would suit many with disabilities & their families but as always a belief that only those who are older require accessible homes
22
35
182
How can a hospital justify this when some wards give the tv for free dependent on your diagnosis & charity funding. Surely, the mere fact that the person has a complex LD (& medical needs) and they/and their parent carer qualifies for certain benefits should be sufficient ?
4
18
184
No unpaid carer should ever be forced into poverty, left to do over 90 hrs a week, left reliant on food banks, charities or fundraising - if that’s happening, which it is then the governments failed & are turning a blind eye to the exploitation of unpaid carers
#realunpaidcarers
4
70
183
Maybe unpaid carers need to start counter claims for loss of earnings.
And maybe, they should have timesheets for all the work they do that goes beyond a normal “parent/child/husband/wife” relationship & be paid for the work they do that takes them away from their career.
12
38
184
Funny how the DWP might be able to access peoples bank accounts soon but disabled children are still locked out of their trust accounts
Why are those with disabilities or those caring for them constantly treated like criminals?
10
53
182
Unpaid carers work an excessive amount of hours. There’s nothing they can do about it, it seems
They cannot report it to the health and safety executive as others can, as they’re the only people not covered by the laws, regulations and rules that apply to everyone else 🧵
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50
176
Questioning the charging of tv in hospital needs to happen. Costs a fortune when in for a while (or regularly) and is not affordable to many. Taking advantage of people when they are unwell is not ok.
7
33
175
Many
#unpaidcarers
can’t work longer hours as there’s not enough hours in the day
@theresecoffey
. Many already work 24 hrs a day, 7 days a week. What an ignorant comment. It’s not their fault the Government fails to recognise them as workers, exploits them & pays them a pittance
9
40
177
When a professional assesses the work an unpaid carer is doing, the word “mum, dad, husband, wife” should be removed. Forget, they are a parent, husband or wife because they certainly can’t be just that.
Treat them as you would any other professional & consider their life.
🧵
4
25
175
A full time worker usually works 35 hours or more.
To qualify for carers allowance you have to care for 35 hours or more. That’s a full time job but you aren’t paid for it.
But you are allowed to “fit” a job around your full time caring role & earn maximum of £132 a week.
8
48
171
Thinking of all the real unpaid carers today at home, unable to find time to shower, eat or sleep. Doing the job of 1.2,3 people, caring for 1,2,3 people. Working in excess of 90 hours a week, all for an allowance (or sometimes no allowance) of less than £12 a day.
8
35
171