Carers Rights for Unpaid Carers!

If you’re looking after someone who is ill, frail or disabled, chances are you’re probably an unpaid carer. That’s right you’re a carer, and usually, it’s a family member.  I say that because the term carer has now become synonymous with care worker. 

A care worker is a professional who is paid to support someone who is ill, frail or disabled. 

Care workers have been recognised for the incredible work they do alongside hospital staff as part of #clapforcarers at the beginning of the COVID crisis. But, I know the majority of people weren’t thinking of unpaid family carers, but instead of all those care workers in care homes, some of whom were sacrificing their time & lives in order to protect their residents.

They have done an amazing job, but so have unpaid carers, and I feel we have been left to fend for ourselves when we needed the most support. 

hands people friends communication

We didn’t get any extra financial support packages from the government.

We weren’t offered any help in trying to get food on the table whilst trying to shield our loved ones. 

We didn’t get access to priority food delivery services

Our care support packages were cut with little notice. 

Our avenues for respite in the community all closed down. 

Access to essential health care has been limited.

We’ve been abandoned! We’re still abandoned.

We work 24/7 and are always on call, it doesn’t just stop at the 35 hours week minimum that the government requires for us to qualify for any financial help.

We’ve been appeased by false promises, every year we hear the same thing, that things will get better.  This year has shown us how little we are valued. 

64% of  unpaid carers  have not been able to take any breaks from their caring role during the COVID-19 pandemic 2.

Carers Trust

Caring is tough, one carer, Lynne Bardell described unpaid carers perfectly during a recent interview with BBC South East she said

‘We’re not invisible or silent. We’re just not heard’

BBC South East
Spending Review

Even today, in the Government spending review nothing has been added for carers!

Let me give you an example, this is a small list of the type of work a professional paid full-time care worker in a care home can undertake. Unpaid carers will look at this list and say yep I do all of that as well. But I don’t get respite, I can’t clock off after my shift and I certainly don’t get paid a decent wage for it.

  • Personal care – washing, oral care,
  • Dressing & grooming
  • Toileting and Incontinence Management
  • Prepare meals, help with Feeding & Drinking
  • Supporting someone to carry out tasks like shopping, cleaning, reading
  • Physical tasks like moving from one location to another, hoisting, using wheel chairs etc
  • Dealing with paperwork, financial & government agencies
  • Cleaning & Laundry 
  • Dealing with medication management
  • Engaging in social activities
  • Provide companionship
  • Working with medical professional like GP, District Nurse, Memory Clinics and Support services
  • Handle any type of emergency
  • Communicate with family & user effectively

Look at that list – that’s a job, that is advertised, paid, with holiday pay and a defined set of hours.  They’ll have some form of training on their roles, work with teams, have the essential equipment, learn about moving/ handling safely and have support from their co-workers and employers. They are valued for their work.

Now compare that to a full-time unpaid family carer.  Think about it, just because I’m a family member doesn’t mean that I’m not working when I care for my mum!

If lucky you’ll qualify for ‘unpaid carer’s pay’ of Carer’s Allowance at £67.25 per week. But to do that, you also have to:-

  • care for someone for more than 35 hours per week, 
  • not earn more than £128 p/w after tax, 
  • not study more than 21 hrs a week
  • the person you care for must be on an eligible benefit like PIP, Attendance Allowance, DLA etc. 
  • You might not get if you have other benefits like pension credit or state pension if more than £67.25 but you may get a top up. 
  • You might get Univeral Credit which is topped up with difference from Carer’s Allowance

For most family carers that amount & limitations are a joke, it’s like the government is penalising you for taking up a caring role yet

Unpaid carers save UK state £530 million every day of the pandemic3

Carers UK

Not only do we get an ‘allowance’ (what are we – school children!!) but we are restricted from doing anything that could enrich us like studying or working. We can’t take on a job that supplements our income above the basics.

No life little luxuries on that wage! Why do we have to miss out because we care for our loved ones? I’m not saying pay us the world, just a minimum living wage!

I didn’t choose to be a family carer. I just responded to the situation but by doing so I have saved the government millions. I gave up my career like many unpaid carers do to look after my mum. Some people can’t do that, they may to have juggle caring with a full time job because they can’t afford not to or have larger family commitments that need to be managed.

We don’t get trained, we don’t get holiday pay, we’re lucky if we get any respite and we damn well do more than 35 hours per week of care.  

64% of unpaid carers spend more than 50 hours a week – of their time caring1

Carers Trust

That’s physically, emotionally, and psychologically draining especially if you’re doing it alone or even worse are frail or disabled in some way yourself.  

It impacts our ability to cope, our well being and stress levels increase.  This year has been the worst!

Two-thirds of unpaid carers have seen the amount of time spent caring increased in the last 6 months (66%)1

Carers Trust

On top of that you have the hardship of trying to deal with all the financial obstacles. 

Over quarter of carers (28%) are struggling to make ends meet2

Carers UK

Carers Rights

Carers Rights Day

Especially, if you’re not aware of what you’re entitled to – Carers Rights! When will it be enough, many carers have reached breaking point but the government seems to have blinkers on and are not seeing the fragile state unpaid carers are in.

I looked after my mum for over 2 years, before seeking financial help. I used my savings because of the hostile nature of the benefits system at the time referring to everyone as “scroungers”. 

I wasn’t aware that I could protect my pension contributions.  I lost out on over 2 years of pension credits.  If I’d researched it more I could have applied for something called Carer’s Credit.  

So the first step is really to know your rights, that’s what Carers Rights day is all about.  It’s trying to get the message out to all those carers who may not be aware or understand what they are entitled to and it’s not limited to financial help.

Knowing your rights and entitlements can act as a gateway to a better life, opportunity to work, get respite or support and help in the home.  It’s not a magic bullet but it could just give you that small amount of help you need.

The help I needed was a care support package, with home care workers coming in 4 times a day for 15-30mins to help with the physicality of mum’s personal care.

Here are a few steps that you can take. There is much more out there, check out Carers Trust or Carers UK for much more comprehensive help, but I can only speak to you about my own experience.

  • Get a carer’s assessment. It’s to understand what would make your caring role easier for you and what help and support you need. 
    • It can look at how it impacts your physical and mental health, need for respite, juggling work and caring and explore the help you may need in balancing caring with other demands in your life.
    • It is a bit of lottery as each council has its own way of doing this. But it can result in you getting some respite, signposting to organisations that can help you juggle your role with future aims. 
    • I was able to get a direct payment from mum’s allowance to allow me to have some respite during the week, 3 hours not a lot but desperately needed.
  • Apply for Carer’s Credit to ensure no gap in your National Insurance records if you don’t qualify for Carers Allowance and you’re not working.
  • Apply for Council Tax Reduction if your living in the same household
  • If you don’t get any help with benefits (capital limits) but have a low income and need help with health costs then apply for a for help with NHS costs through the NHS Low Income Scheme (LIS)
  • Apply for carer’s grants – look out for charitable organisations like Carers Trust or Government announcements for carer’s grants that can help in the short term for financial help 
Disabled Facilities Grant - Carers Matter Norfolk
  • Apply for Warm Home Discount  to get £140 off your electricity bill
    • Most people have heard of this for people automatically get it for those on the Guarantee Credit element of Pension Credit but not everyone knows you can also getting on a first come, first service basic if you’re on a low income and meet your energy supplier’s criteria for the scheme (yep, it depends on who your energy supplier is!)

I laugh every day when mum says why do I have my breakfast so late or why I let my food get cold, it’s because I’m taking care of her needs first. I know that as carers we’re always told the opposite, with the saying put your own oxygen mask on first before helping others but we need the Government to make sure that the oxygen tanks are full first, we can’t help others if you don’t help us!

Give us real Carers Rights, if I was PM or #FMforaday I’d recognise the work we do by valuing it.


  1. Carers Trust
  2. Carers UK
  3. Carers UK

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