Guest post: “I’ve lost £100,000 in earnings in two years of caring” – and ‘Outraged’ has also lost her life..

"My life before caring was bliss.  I worked in the public sector and was outraged at the austerity measures being imposed on public sector workers.  - I didn't know I was born"
"My life before caring was bliss. I worked in the public sector and was outraged at the austerity measures being imposed on public sector workers. - I didn't know I was born"

Outraged writes:  “My life before caring was bliss.  I worked in Ireland, in the public sector and was outraged at the austerity measures being imposed on public sector workers.

I didn’t know I was born.

I moved back to the UK two years ago when my mum was diagnosed with a brain tumour.  She had worked fulltime but was also a carer for my sister who has cerebral palsy.   I now look after both of them as they are very physically disabled and thus very physically dependent.

The support family carers can get from the state is abysmal. It is also means-tested.  I am expected to fund respite care top-ups on a carer’s allowance.  Bear in mind the allowance is £61 per week regardless of how many people you care for, and tops-up range from £50-£200+ per week.

I cannot work – no employer wants someone who can’t be flexible, who has to leave work regularly or can’t stay back because of myriad hospital appointments, blocked catheters, toilet calls, or most frequently of all – to pick up the personal care tasks that care agencies won’t do…or more usually don’t do safely.  I have to supervise carers, or  else they would mobilise my mum unsafely -sinks are washing aids, not standing aids!  -they don’t change their gloves (they don’t pay for this PPE unlike me) – I’ve stopped carers from taking stuff from my fridge because they had my sister’s faeces on their gloves; -they leave our front door ajar ALL THE TIME.

The state pays £400/week to these agencies for providing 33.25 hours of care.  I get £61/week Carers Allowance for 118 hours.

The red tape is endless… disability allowance, carers allowance, personal independence payments contracts, housing benefit, means tested assessments for housing support services, care in the community services, pensions credit, support with health costs, carers leave application to my employer. These are reviewed annually.

On a daily basis I am to my carees:-  *  Nurse,  *  physio, *  PA, *  secretary, *  social services advocate, *  chef, *  cleaner, *  chauffeur, *  personal shopper, *  limb-mover,*   pharmacist, *  debt manager, *  banker.  I feel like I do so much more, I am that tired.

I’ve lost circa £100,000 in earnings in two years of caring.  For this the state offers me £60/week.  No pension, no sick pay, no holidays and if my carees go into hospital or respite care then I lose that £60 too.

My work and friends are in Ireland, my partner is in Ireland, my home is in Ireland but I’m here.  I’m only 34, I want to have kids, I want my life back.  But that will only happen when they die, and then it’ll be too late.

3 in 5 of us will be carers at some point in our lives, and that figure will likely grow as life expectancy exceeds life quality.

I say to all you non-carers who happen to be reading:  enjoy your life whilst you have it, the state will not permit you a life as a carer.In fact, if it could means-test my nostalgia it probably would.

Carer With Attitude says:

If you are altruistic and want look after those you love, and save the NHS and Social Care departments  from having to pay the going hourly rate for paid care (in this case £12 for every daylight hour), should the state really expect you to  give up your life, your career, your future, your family,  as well?

Seems so.

Yet MPs (every single one of whom have failed to help the family carers they all represent)  tell us they are being altruistic to live on that teeny weeny little £67k  they get  as basic salary (plus generous expenses to cover the costs of running an office.. staff..somewhere to live..ok several places to live.. travelling cushions.. duck houses… moats.. moles…You know how it goes) And they seem to be allowed extraordinary licence in their expenses claims. AND many get seeming immunity from prosecution, censure or  dismissal when they go beyond licence to downright fraud.  

Iain Duncan Smith thinks that  £61 a week Carers Allowance is generous recompense for Outraged’s  altruism and hard work. He also thinks £39 is a reasonable amount for himself to try and claim for a single breakfast* to line his lardy, smug and self-entitled tum.  Think about that for a moment.

I wonder how many years Outraged has spent getting qualified?  WIkipedia points up Duncan Smith’s qualifications as pitifully thin when the truth was told.   Wouldn’t the world run better if  the Ian Duncan Smith  ‘learned on the job’ for a while, as fulltime carer discovering for himself the realities of working round the clock without acknowledgement or comfort whilst trying to survive on £60 a week?  Thus allowing Outraged to fulfil her considerable potential through the career and life she would like to lead?    Answers please!

The next Carers Virtual Strike will be on 21 November 2014.

*his claim was submitted – but, thank goodness, not accepted.

The Carers (Virtual) Strike continues

Business as usualOn the day that many public sector workers go on strike, I urge you all to remember us unpaid, overworked family carers who cannot strike to improve the inhumane conditions that this government, and the last, and the governments before that have elected that we work in order to prop up the NHS and social care systems.

You would like an improvement in your pay and working conditions? Well so would we. And a percentage increase will not help us. Both 0% and 100% of NOTHING is still ZIP.

And yet family carers provide £119bn worth of work for the state. (And that’s the three-years-ago figure.) The actual cost of the care we are relied on to provide for free is astronomical.

Last month we family carers went on a virtual strike to demonstrate this massive cost . On 21 June, 988 virtual strikers logged up 23,712 virtual strike hours, an agency cost of £355,680. But if  they had fallen dead of exhaustion – and working round the clock for months, years on end makes this a distinct possibility – the annual replacement cost would have been  £130 MILLION. Multiply that by the millions of carers the state is relying on to work these inhumane hours and you can see you have a problem.

Apart from the Guardian and Carers World Radio, this strike was largely unacknowledged. Our plight is a matter of indifference to many who fight for other forms of social justice. Owen Jones didn’t talk about our conditions, neither did Polly Toynbee. Russell Brand didn’t take off his shirt in sympathy for our cause.

But folks - just because you pretend we don’t exist doesn’t mean that we’re not here. Carers have as good a case as other  - clearly more politically sexy – strikers. And we’re not going away. In fact, we’re not able to go anywhere

The next Carers’ Virtual Strike will be FRIDAY 21 Nov 2014. Please support it. If you think your hours are tough, your pay is poor, look at our lives and remember, everything is relative.

So how can you help?

Everyone – and particularly political parties - Read and understand our Carers Manifesto

Unions? We want, we need union representation as carers. Unison, Unite can’t you go beyond expressions of sympathy and find some way of having an allied chapel  specifically of family carers?

Public? please read and sign this 38 degrees petition, demanding better recognition and rights for home carers

You can listen to – and download – the Carers World Radio podcast on the first Carers Virtual Strike here. (I apologise for my slightly stammering delivery, I was having a number of little seizures as I spoke.).

The buck stops where? I write to IDS

I became a CARER in a HEARTBEAT..   .. show me some HEART
I became a CARER in a HEARTBEAT.. .. show me some HEART

26th June 2014
Dear Iain Duncan Smith
Carers Virtual Strike 21 June 2014
Since the beginning of the year you have been receiving emails from hundreds of unpaid family carers to tell you about the first Carers’ Virtual Strike. The strike was to highlight the continuing indifference and longstanding lack of support offered to carers by successive governments who paradoxically depend upon the same 7 million unpaid carers to balance their books. We wrote to you specifically because – as workers – we were asking for changes to carers’ allowance, pension arrangements and working conditions. We have had no reply from you, or from the Department of Work and Pensions to these emails – not even an acknowledgement of receipt.

The first strike took place on 21 June. 988 virtual strikers took part, logging up 23,712 virtual strike hours on that day. If you had had to replace these few for the 24 hour day they work unpaid, the cost to the state would have been £355,680. If they had fallen dead of exhaustion – and working round the clock for months, years on end makes this a distinct possibility – the annual replacement cost would be £130 MILLION. Multiply that by the millions of carers the state is relying on to work these inhumane hours and you can see you have a problem.

On the off-chance that you – and the DWP – may have failed to receive every single one of our communications, I am sending the letter again – both as an email, and as a paper copy, with the names of every signatory. I am also copying it to various media outlets and publishing it online:

“Have you ever been on duty – responsible for someone’s life – 168 hours a week, week in, week out? It is quite as dreadful as it sounds. You have difficulty with everything: working, sleeping, socialising, existing. And, no, you don’t get used to it.
Many – most – carers struggle with difficult daily conflicts between work and care, and an estimated one million have had to give up work or reduce their hours and lose much needed income. (And often a lot of freedom, companionship and self-esteem in the bargain). As money worries cause stress, it’s hardly surprising that a lot of carers are also suffering from anxiety and depression because of finance.
Successive governments have failed to support us.
Loss of life, of income, of individuality. It’s a huge price to pay for love. Yet we don’t expect to be thought of as noble: we do it because we care and there are no other options . But it isn’t surprising that we would rather be thought of as the workers we are rather than the saints we are not and be treated accordingly.
This is why we, the unpaid carers of Britain are going on strike. A strike with a difference – we Carers will only be withdrawing our labour virtually. And so, unlike with a real strike, we can ensure that our loved ones will stay alive and safe and protected.
There is no way that the state can compensate us for the sheer amount of time we give up voluntarily. But you can prevent it from wrecking our lives and futures and making us an unwilling burden on the state when our caring work is over. We want you to recognise and recompense the work of the nation’s unpaid carers. Not for justice – though it would be just. But to ensure the country designs a robust response to the caring crisis that is coming upon us.
Our demands are modest, affordable and practical:
1. Carers Allowance for all live-in carers, irrespective of age or employment, just as DLA/PIP is given to those we care for
2. A state-funded occupational pension scheme for each fulltime carer to reflect what we might expect to have if we were working, say, only an 80 hours a week at minimum wage
3. Solid practical careers advice and training for working-age carers to help us train for and sustain appropriate work within our environment and to provide us with the luxury of a working life should our caring duties finish
4. Social housing to recognise the requirements of disability and caring in the allocation of rooms. Sufficient appropriate accommodation purpose-built for the disabilities of the local population – because if it is not provided this is a huge stress on carers
5. That state money ONLY given to carer organisations that offer properly targeted, transport-accessible, fit-for-purpose help for every carer who needs it.
Please listen to our voices

We await a positive response from you. The continuing plight of carers is most certainly not just our problem – it is also your problem, the government’s problem, and the nation’s problem. Ignoring it is not the answer

Yours sincerely

Carer with Attitude – AND another 987 signatories

Shoulda been a kitteh – what a pitteh!





It’s 22 June 2014 – the day after the First Carers Virtual Strike. (For folks, this virtual strike is only the first of many.)
How did it go? Well, it got a lot of coverage from some quarters – and carers’ groups in Australia and Northern Ireland have contacted us, interested in doing the same. Guardian Social Care was supportive – and a lot of Carers joined in.Because Carers were interested.
But, to be honest, we know that, don’t we?
Were many others? Did Russell Brand take his shirt off for us? Did Owen Jones complain that the BBC had failed to cover our plight? More interestingly, did Iain Duncan Smith, elected by the people of Britain and appointed Secretary of State for Work and Pensions answer by so much as a word the 1,000 polite emails sent directly to him that pointed him towards the Carers Manifesto and asked him for change?
In each case the answer to the question is “Don’t be daft! ”
Folks, blokes, positive jokes, we carers will carry on making our point until each and every one of the purblind people of this country recognise the things that really matter. And close to the top of this list should be the fact that our NHS and Social Care system does not acknowledge that it is totally and charmlessly reliant on several million family carers working round the clock for nothing. And that no government or party wants to change this fact

I will write about the First Virtual Strike shortly, but today it seems an appropriate time to reblog this piece (written before Christmas).

Originally posted on Carer with Attitude!:

The RSPCA tells me that there are a million stray cats in the UK.  And I know there are also a million of us full-time, unpaid carers.

Have a think about this for a moment. The two facts should not be mutually exclusive.

Yet when was the last time your Facebook timeline was filled with pictures of suffering family carers? with piteous appeals from charities whose only aim is to make carers’  life better (“Carrie has not slept a full night for ten years. Could you give up a little of your precious time to help her?“)? with exhortations not to forget at this festive season? with appeals for time, funding, volunteers?

I’m not really asking you this question. We all know the answer.

Chums - let me tell you, an unpaid family carer may need funding, support, volunteers quite as much as a cat. Maybe – speak…

View original 232 more words

Carers Strike Today – VIRTUALLY

VIrtually Downing Tools

Today’s  the  Carers Virtual Strike day of action. And never was a day of action more aptly named, because – of course – today the unpaid family  carers of the UK will be working our socks off as normal.

Join us in our fight for justice – and our simple, reasonable and affordable demands. Each sign-up to the strike sends an email to Iain Duncan Smith, asking him to implement the Carer’s Manifesto.

If the people signed up to this strike  by this morning dropped dead of exhaustion it would cost the UK  nearly £125MILLION to replace us. For a year. £125 MILLION is a lot of money, but its  just the tip of the iceberg when we look at the real cost of unpaid care.If every carer signed up, the replacement costs of us all would be truly staggering.

As carers, Virtual Strike Day will, of course,  be business as usual.  So how will you be spending the day? Tell us, please and, if possible, send one or more of the following that we can put online:

  •     Tweet about your day – hashtagged  #CarersVirtualStrike
  •     Tweet  a selfie, hashtagged  #Strikerselfie  #CarersVirtualStrike
  •     Send us a photo to   or to
  •     Email us and tell us what would be happening to your loved one if you weren’t there today …

You can be as public or anonymous as you like – but please remember in every case  to  safeguard the privacy and  identity of the person you care for.

We Carers continue to get a raw deal but this Virtual Strike is the one way we can demand justice without harming those we love and care for. Waiting for people to notice us has not worked. If we make a fuss, kick up a twitter storm, and shame everyone into recognising how much they need us, yet take us for granted, we may finally achieve some of the things we need to make our futures better than our past .

Have a good day!

Click here for the Guardian Social Care Network coverage  on  WHY we carers are on virtual strike

Business as usual

Carers Week? I’m only a carer, I didn’t notice..

Question from the Carers UK 'State of Care 2014' survey. Note how they only ask whether you spend1-50 hours working as  a  carer. You would think they would be anxious to  find out how many million carers work up to 168 hours a week (the total number of hours in the week). But clearly not. Maybe they're not even aware of the possibility themselves! Amazing
Question from the Carers UK 'State of Care 2014' survey. Note how they only ask whether you spend1-50 hours working as a carer. You would think they would be anxious to find out how many million carers work up to 168 hours a week (the total number of hours in the week). But clearly not. Maybe they're not even aware of the possibility themselves! Amazing

So fellow Carers. Tell me ONE thing that has improved for you because of Carers Week? Don’t all speak at once .

In fact, what was Carers Week about?  I go to the Carers week website and I read the following, which frankly makes my blood boil:

Caring can be a rich source of satisfaction in people’s lives. It can be life-affirming. It can help deepen and strengthen relationships. It can teach you a multitude of skills and help you realise potential you never thought you had.

Gah! Please don’t patronise us. If you want to professionalise us, pay us.  And if you can’t afford to pay us – and the UK NHS and Social Care system is reliant on not paying 7million carers to do most of the caring work in this country - just shut up blethering, why dontcha and start thinking hard how to make our lives better, ok? We carers can judge how  ‘richly satisfying’being a carer is for ourselves.

But without the right support caring can have a devastating impact. 

No shit, Sherlock.

Evidence shows that caring can cause ill health, poverty and social isolation. When caring is intensive and unsupported you can struggle to hold down a job, get a night’s sleep, stay healthy and maintain your relationships with friends and family. 

Or you might not even be able to hold down that job, get a night’s sleep, stay healthy and maintain your relationships with friends and family. I mean have you – the person whowrote this –  personally tried to work 168hours every week without a break? No? Omigosh, no, you are merely working for a charity that talks about carers. You work European Working Time Directive hours, don’t you? You get pay? Sick pay? Holiday pay? An occupational pension?  Nice. You can leave work at the end of the day and go and do something else.  You can meet your friends in a bar at the end of work to say how hard work is – because for you, the concept of ‘after-work’ actually exists. You have weekends and bank holidays to yourself. You must really be able to empathise with our lot

“When caring happens, many people are shocked to find out just how little support there can be. Help is often out there.”

We both know this to be total rubbish. Help is almost never out there. The pretence of help,  the illusion of support – lots and lots and lots of words… but actions? No there are not a lot of those.

 During Carers Week events take place all around the UK to involve carers and make them aware of the support and services available.

Hah! I didn’t hear of a single solitary thing around where I am. Nobody contacted me. No-one involved me. The support and services on offer were what they always have been.  Nonexistent. Lets be frank –  when it exists – if it exists  - it isn’t support. And it isn’t services. Its a series of halfbaked initiatives and pats on the head from organizations too timorous to lobby, too embedded in the status quo to campaign, and too fond of their own comfort zone to extend themselves for the people they are paid very decent salaries to support.

Here’s a suggestion.

All you who think you are doing a good job supporting carers? Why don’t you do your job and stay in the building night and day for, say a couple of months on end. Don’t accept any pay. Work whether you are ill or not, and do nothing else whether you want to or not.

Live on that carers’ allowance that you make such mileage of supporting us to get. Really allows you to live it up big-time, doesn’t it!

Want to take a break? Go out to a village hall for a scant hour and meet workers from another carers charity  and sit in a set of rickety chairs  next to each other, drink a cup of instant coffee and make conversation. You have so much in common - particularly that business of never being able to move from one place. Experience  the full delight of getting away from it  - you were lucky to have the cover and there was so much to say to each other. THAT should support you for another month.

They say that before you criticise someone you should walk a mile in their shoes. You should have to walk that mile before you think of supporting them too.

I am sorry. you big carers charities – what you provide is not good enough. Carers want more. Carers need more. Carers deserve more.  We need  people prepared to fight on our behalf. Where are they?

Sign up to the Carers virtual strike

Carers Manifesto: five simple ways too change carers’ futures


NHS crisis? Wait till the carer crisis hits!


Private Eye – you rock! In Carers Week your magazine  - alone – has identified the significant problem of Britain’s current care system.

In today’s issue (1368: 13 -26 June) M.D. writes as follows:

The NHS and social care system is crucially dependent on millions of unpaid carers, and the round-the-clock pressures and responsibilities they face are huge. If carers went on strike, the NHS and social care services would collapse overnight.

No shit, Sherlock!

Thank you thank you MD for saying aloud what we carers have been saying aloud over and over and over again to complete and utter  silence. Its amazing how loud you can shout when nobody is paying you. And  how little impact it makes when nobody is minded to hear.

Let us go back instead to the narrative of support and heroism and battling on and the ‘all in it together’ Blitz mentality that both Labour and Tory politicians have subscribed to because neither of them historically or currently  have wanted to help the carers to a better, more entitled life.

Heaven forbid that anyone should look at carers and see any need for entitlement. We save that for ‘workers’ don’t we?

Not only have we carers been saying this -in our own small way has been trying to quantify the sums involved .

If the 489 24/7 strikers currently signed up  disappeared – or died – it would cost  the state £64 MILLLION to replace us.

So if the 1.5 MILLION carers disappeared, it would cost the state something like £197 BILLION to replace.

That’s hardly small potatoes.

So no more dicking about . Britain must start implementing the Carers manifesto now – those five simple cheap affordable proposals that will support this huge unpaid and invaluable army to carry on caring.

Before it is too late.