The crisis of carers paid just £1.79 an hour.

I went to renew my car insurance recently only to discover my occupation is ‘unlisted’. I was forced to telephone them and ask what I should list myself as. They decided I was either ‘unemployed’ or ‘stay at home parent’. I am neither of these! I am a full time carer but no-one seems to know we even exist!

I gave up a managerial position to care for my disabled son. I have a degree education and had a good career in sales. I was a home owner, had a fairly new car and I was valued. Then I had a disabled child and now all I am deemed worthy of is an hourly rate of £1.79. In reality I get much much less than that!

I feel utterly disgusted at how unpaid carers are treated in this country. Are people aware that carers allowance is only given out to those caring for someone 35 hours a week or more and that it is a weekly amount of just £62.70? I wish I was only working 35 hours caring but assuming this was all I worked I would still only be paid a measly £1.79 an hour! Would you work for that amount?

Would you work permanent night shifts dealing with someone with challenging behaviour, who is completely incontinent and has night seizures, and still have to work 12 hour days as well? Would your union not have something to say about this? What about if you had no breaks and were often attacked at work? What about if you were denied any holidays or even time off for ill health? What if sick pay was non existent? What if all your employment rights were taken away from you?

When I became a full time carer it appears I lost all my human rights.



I have no union to protect me and no manager to put my case to. I went from being a someone to a no-one the second I became a carer.

I am considered nothing by society who view me as a ‘benefit scrounger’, ‘lazy’ or nothing more than ‘unemployed’. People scoff at my ‘profession’ like it is a joke.

Let me tell you my job is no joke!

I deal with life and death with a child who has severe complex needs. I make decisions on his welfare and health needs daily that should really be made by neurologists, doctors and oncologists. I co-ordinate his care without a secretary and attend meetings without back up. I sign forms as his ‘representative’ without legal support because no-one else is bothered what happens anyway.

If my son should die and I updated my CV employers would simply see me as having taken a ‘career break’ or ‘time out for family’ rather than viewing my current situation as a serious job. Why? Because caring has no prestige. It is seen as worthless, less than, of no value and not beneficial to any career. Even if I wished to use my experience to take up full-time employment in the care sector my current work is of no use as I have no reference or company or courses I have completed.

Even the NHS view me as simply the one who pushes the wheelchair or who hands his appointment card over. When my son reaches a certain age it will be expected he will attend appointments with me waiting outside despite the fact he is completely non verbal and unable to understand what is required of him. I will have to go through a host of hoops and bureaucracy to prove as his carer I even have a right to be with him, yet anyone can have an advocate or friend with them and they are fine?

I gave birth to a disabled child. I gave up my career to be his carer. Apparently that means my career has hit a brick wall and I have waved goodbye to my self respect and self worth. My job title no longer even appears on a drop down list and my hourly worth is now reduced to just £1.79 an hour.

This is the crisis of carers in Great Britain right now.



Does anyone realise this is going on? 

31 thoughts on “The crisis of carers paid just £1.79 an hour.

  1. I wish I knew what to say to you. I have looked after my son for 28 years and worked on and off. It is soul destroying when you just want the best for your child but can’t seem to catch a break or have any support or understanding from anyone. Even social services talk to you like your an idiot! Stay strong and let’s hope a change will come.

    Liked by 1 person

  2. You missed the bit about having your £1.79 an hour taken off you when you hit 65, regardless of whether you’re still caring or not, and the bit about having any help you’re currently entitled to stripped from you should the worst happen to your child, without any grace period.

    Liked by 1 person

  3. VERY WELL PUT!!! I, like you,…had a career, a job, a company car, a house fully paid for, a very good salary, holidays and my health was great. Got married in May 2005, and from September 06 my life was turned inside out and upside down. Literally all aspects of my life have come under scrutiny, and I live day to day thinking….is this what my life has come to? No one cares ….even the charities representing us seem mercenary, serving but a small minority. We are the sort of people who should be heard, but seldom are. Should be applauded not pitied. I often consider that prison would look after me better that the present system!!! I applaud you…have you considered starting a petition? I would..but am not as eloquent!! My child has Edwards Syndrome, which means profound clinical, physical and educational needs .

    Liked by 1 person

  4. I feel exactly the same, I have 3 autistic children between 9 and 4 years old, 2 severe with learning difficulties, both also with severe behaviour issues, 1 moderate. I still obviously get £62.70 per week for 3 children so really less than £20 per week for each child. Bad sleepers, 24/7 needs, non verbal, no awareness of any dangers. No one wants to know!!

    Liked by 1 person

    • Yes I have two I care for an my elderly mum! They all qualify for me to get carers and I care for all three yet I can only get carers allowance once? So who do I choose to care for??


  5. I am an unpaid carer for my own daughter for which I don’t receive anything, she is now an adult and has savings from before her disability and this means she isn’t eligible for benefits either. However, I am also a paid carer for a very disabled young lady who has lived with me now for 15 years. I receive what I consider to be a a fair wage for looking after her because she is not my own (although if you consider the 24/7 care I suppose it would’t look good enough to some people) – but if her own mother had continued to look after her she would only have been paid the carer’s allowance. It just doesn’t make sense and does nothing to encourage parents to look after their own disabled children – which in many cases is best for the child.

    Liked by 1 person

  6. I’ve been there too. We aren’t valued. I had a long gap out of work 14 years and the working world was different. My son is now 27 and in independent living and suddenly we don’t make the decisions anymore and we are not always kept informed if they don’t want us to be. You would be surprised.

    Liked by 1 person

  7. It is exactly the same for those who care for elderly parents. I look after my mother who has end stage dementia. I left work 7 years ago to look after her after my father died of a complication of Parkinsons. She is doubly incontinent, has great difficulty communicating, has to be spoon fed, washed, clothed and changed, she cannot walk without a lot of help, yet £62 per week is supposed to cover what a care home would charge £1700 a week for. Yes I know it’s my mom, and we have not just a duty but a responsibility to take care of our families, with love and care. But it is galling when people accuse you of scrounging. And they take the allowance away as soon as she goes to hospital, even though your role as carer does not stop, with hospital visits and using the time they are not at home to try and improve things, because it maybe the only chance you get to properly clean thier room or put in a new handhold, redecorate etc. . That’s on top of bringing up kids and keeping the household running as best as you can.

    Liked by 1 person

  8. You are doing a brilliant job. I will be campaigning after today for careers to be recognised. I too gave up a well paid high flying job in the civil service 33 years ago to care for my quadriplegic son Lee. I have had to fight all his life for equipment education wheelchairs grants etc etc. Lee has been at home for four years now. There are no days centres open to him or his peers. This is not healthy for Lee or for me. I’ve been ill this year brought on by stress! Stress they say what have you got to be stressed about lol. Live in our house for a week I say……… Keep on doing what you’re doing raising awareness and being an awesome mum. xxx

    Liked by 1 person

  9. I am a single mom of 2 beautiful disabled boys of which are now 14 and 16. One has add/ADHD, ODD, seizure disorder and he had a stroke at 9 months old! I also believe he is autistic But get a diagnosis for it! I’m only the mother! My other son has Aspergers disease, ADD/ADHD, OCD! They need constant attention! It is not an easy job! It makes me frustrated when people assume that parents like us with our amazing children get treated as less than! And we don’t even get paid to do so! But yet we are looked at as insufficient and not worthy of respect and lazy! We are the true heros in our children’s world!

    Liked by 1 person

  10. Hi there i too am a carer..thanks for writing what it is like to exist on benefits and be deemed unemployed whilst working more than full time hours as an unpaid carer xxxx

    Liked by 1 person

  11. We totally agree with everything you have said. I look after my disabled wife, I have to go out to work at 4am in order to pay our bills. Otherwise we would be in your position, having to get by on £62 a week. How on earth can anyone live on that amount . You are doing a great job.

    Liked by 2 people

  12. I cannot put into words how angry I feel at the way you are being treated you are being used and abused because you care it’s a disgrace!!!

    Liked by 1 person

  13. Carers Allowance is taxable, therefore anyone on it is EMPLOYED by proxy thru DWP. Also, pension is contributed too via DWP.

    Therefore, insurance is VOID if incorrect info applied to policy.

    As recipient of Direct Payments, My employed PA is here on respite days and gets over £10 per hour, yet I’m not allowed to pay my Terminal hubby

    Liked by 1 person

  14. Wow you are so true!! I’m disabled and for while needed 24/7 care. My ex partner gave up full time work to look after me but he wasn’t aware of the financial impact it would have. So I do understand your frustration. X

    Liked by 1 person

  15. Caring about a person and being their ‘Carer’ are two different things, I had to give up my degree course to become a ‘Carer’ to my husband when he developed heart disease. He was self employed and I had been his PA as well as a mother and wife and all that that entails. I was also an escort for disabled children’s school runs. Suddenly I went from having a busy life with several jobs to just being a ‘Carer’
    I am not a cold person, of course I cared for my husband but I resented the fact that I was expected to drop everything, my education and all my plans, to become his nurse, a job for which I felt inadequate. Being very squeamish I never felt a vocation to be a nurse, quite the opposite I knew I did not have the character or the patience to look after sick people.
    On top of that was the fact that our income dropped when we were in between houses and had two mortgages and a bridging loan, so we really struggled financially, I would have been better off with a job but could not have afforded professional carers..
    There is just nowhere to turn in our society for carer help for children or young adults, or even elderly. Close relatives are expected to become ‘Carers’ whether they are able or not, whether they have any capabilities or not, any training or not, and without any verification or validation there is no other ‘job’ in the world where you are given the responsibility of affecting another persons welfare or their life under such circumstances.
    Family members mostly will care for their sick folk but when they become professional ‘Carers’ should be given status with a different title such as ‘Minders’ They should be given training qualifications and decent wage. There is a difference here which should be recognised and acknowledged. Stop making people who care becoming ‘Carers’ it puts an extra burden on them at a time when they are already stressed from worrying, and take away the feeling of the patient being a burden to their family.
    We need more ‘Carers’ and day care centres, I could go on for longer, I know a mum of a teenager with autism who could do with a centre or meeting place for them to go to most days.
    I believe the increase of Carers Benefit will see a drop in other Benefits so nobody will be any better off.

    Liked by 1 person

  16. Well, your story broke my heart. I work out of my home, the device I sale is a wearable life sensing technology that is designed to read your bio parameters in real time and it allows guardians (parents or caregivers) to monitor your loved ones by alerting you if there heart, breathing or blood pressure is out of normal range, the text will come directly to your cellphone. You can check out my website below and see what you think. I get to do what I love, help special needs children and make a living doing it. Although anyone can benefit from it, I chose this sector because of my autistic son and wanting to make a difference.


  17. It is sad because carers take such a burden off the NHS and society. I hope you have a social network to support you if you need to a break sometimes. Looking after yourself is as important as looking after those you care for. 💖

    Liked by 1 person

  18. Hi
    know just what your going through, have had this for about 25 years. Have had to give up our careers,our house our pensions. All to support our disabled daughter. Had to approach Barclays bank recently for an overdraft,due to direct debits going out before we got our carers allowance. Told you have no accountable income so no. Then charged us £8 per failed direct debit. Have approached local council, district council,eon energy, citizens advice. They don,t want to know. As a full time carer for one of your own family 24/7 you are worth less in the governments eyes as a work-shy social scrounger. Unemployment benefit is higher than carers allowance. On the plus side we feel proud that we have given our daughter a safe,I can’t say secure, but loving environment. And as long as our health and sanity holds out, despite the government onslaught. We will try to protect her from the harsh reality,that a disabled person has to face, from this so called caring and christian government.

    Liked by 1 person

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