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

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.


Charities: have you literally NO idea the hours that carers work?

OK, today I am – literally- incandescent. I could fuel a decent sized city with the power of my rage.

I have just been filling in a survey from a charity that represents carers. It wishes to establish the state of play in 2014.  And I was astonished when I came across the following question:Image


All work over 50 hours is lumped together?

This charity should know better than anyone else that many carers are quite literally working – or on call –every single hour in the week. And that adds up to 168 hours.


Why is this charity not asking us for the total number of hours worked?

Don’t they want to know how many carers are really working an unsustainable workload?

Are they, perhaps,  staffed by people who have never been a 24/7 family carer and have no idea whatsoever of how unrelenting our lives are?  Is 50+ hours a huge workload to them?  Are they, maybe,  unaware of how many carers are working a truly unbelievable, health-shattering, inappropriate, deathdefying week?

Now, I count as ‘hours caring’ every hour that needs to be covered by someone else if I were knocked down by a bus – which in my case – and in the case of many many other carers, is every hour in every day in every week. Either directly caring or ‘on call.’

And ‘on call’ is no figleaf. At 3am I may well be lifting, carrying, resuscitating, making decisions of life and death. And have been doing so this entire millennium.

I am totally offended that my 168 hours a week should be  bracketed as 50+  by the organisation that purports to represent me  and my difficulties to government. This unsustainable level of work has deeply damaged my health and will shorten my life between 7 and 10 years.

If like me, you are caring at this level AND trying to earn at the same time you may literally be working  more hours in the week than there are. I reckon I work well over 200 hours every week, dropping what I do to deal with a crisis and then having MsF lying on a sofa by me while I carry on.  Yes, it  is no wonder I will die young. Probably while this charity is putting together yet another strategy paper.

Can I be the only one of the UK’s 1.4m fulltime carers in this position? Sadly not.

We are living in a country in which the population are sincerely concerned about  Minimum Wage, European Working Time Directive etc. Where the media makes a fuss about people having to work longer before they retire, or being ‘unpaid interns’.But that  concern stops dead  before it hits the cohort of family carers who are 1 in 10 of the population!

Yet at a recent agitation meeting where a daycare facility was closing, I was heart-wrenched by the piping anguish of a 94 year old woman. “If this closes, how on earth will I be able to care for my daughter?”

She had been caring for 74 years!

We family carers  don’t work 50+ hour weeks. We work lifetimes, and we need realistic support.

Surely any and every charity that represents us carers should be raising awareness of how much worse things are for us than for the generality of the population and actually getting out there and trying to make an actual difference?

I fear I will be accused of being unkind, unfair and even – blow me – ungrateful, but ponder this. If those that represent us have really lobbied effectively over the last decades,  how come the UK family carer is still working  these unsustainable hours unpaid round the clock with no hope of anything but a diminishing state handout, no occupational pension for the work they put in, and  every likelihood of an early death?

To all charities and organisations, I say: If you genuinely want to represent carers, you need to know what our real lives are like. And you need to be as angry about our situation as we are!

So far 227 carers who work 24/7 are signed up to the Carers VIrtual Strike. If you had to pay agency rates to replace just these few people for a year it would cost the state THIRTY MILLION POUNDS. Just saying.

Hope is the thing with feathers..

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words –
And never stops – at all        Emily Dickinson

I love these words and today I’m clinging to them particularly fervently. Because, dear readers, today I’m feeling a little hope-less.

Hope-WattsI shouldn’t be – today’s been pretty good. Sun shone blue. Council sent me back a sizeable chunk of overpaid tax, hurrah. Cleared out junk room and made it a respite carer bedroom. (And because I am fortunate in misfortune I didn’t even have to worry about the bedroom tax while so doing) Lucky lucky me.

All’s for the best in this best of all possible worlds, yes?


Poor MsFitty continues in a bad way. Its not the seizures, more the mental confusion and strange pathways her brain is taking. And she’s not exactly seizure-free – she’s had six or seven corkers over the week and spent 9 hours in hospital when she was supposed to be on a birthday treat. I could weep..

And then I’m beleaguered by the many, many things that need to be done, that have to be done, that she wants to be done, and that she cannot do alone.

I’m helping her catch at the coat-tails of the education she still wants – and which our local authority is finding disgracefully impossible to supply.

I’m trying to track down the missing care promised by the health authority which vanished like some ethereal flower wasting its bloom upon the desert air.

I’m trying to help MsF manage to balance her interim meds (four separate scary drugs to hold things in place until she goes back to hospital as inpatient). 25mg too low and she fits for England; 25mg higher and she’s a zombie – only aware that she hates not being aware. Vile balancing act!

(Oh, and I’m tracking down the tertiary hospital appointment, come to that.)

I’m working out when I need to be away and finding and booking cover.. Lucky among carers to have found (poorly paid) work that can be done while caring for someone as un-leavable as  MsF, I find working around the clock while caring around the clock leaves one all limp and floppy and isn’t good for the health.

My own epilepsy has required a recent change of meds – until they kick in, the sunlight slaps me in the face and knocks me down like a playground bully. Just as well I don’t drive.But in this car-centred world it makes a lot of things still harder.

And while this is going on my light bright, bubbly, enchanting daughter is become lumpen and apathetic – weighed down with chemicals and errant brain impulses. It would break the heart of a wheelbarrow.

And so many things make me angry. An MP claims £1600 for curtains for his second home. A DJ pretends he’s a used car dealer to save paying £1m tax. A twinkletoed footballer is worth £300,000 a week.

And a family carer is STILL worth nothing  unless they earn under £100 a week, In which case they get £59 carers’ allowance.

Priorities in this country stink to high heaven.

So folks, I need to cling to that thing with feathers because blind hope is the only help available.

Family carers are going on – virtual – strike in June. Please sign up to support us. Actions speak louder than words – but for carers, words are all we have. We can’t withdraw our labour without endangering those we love! Give us some hope, please

OK, it’s a Carers’ manifesto. And why not?

DSCF4087 (631x800)It was pointed out to me today that  in this blog I have, in effect , written a Carers’ Manifesto. So I had a look at it, and – bigod – it is!  It’s a real live Carers’ Manifesto!

(But why not? Its also very sensible.)

There is no way that the state can compensate us carers for the sheer amount of time we  give up voluntarily – nor should you have to. We do it for love, or duty, or common humanity. And often a combination of all three.

But you can prevent our caring duties from wrecking our lives, our careers, our futures and making us an unwilling burden on the state when our caring work is over.  Not as a matter of justice – though it would be just. But to ensure the country designs a robust response to the caring crisis that is coming upon us.

And so I’m making no apology for repeating as Manifesto points, the five demands that we fulltime family carers want.  (No, need.) They are modest, affordable and practical.  And they are not extravagances; they are necessities. Me, I’m still surprised that you (and by that I mean all of you, not just those who run, or used to run the country) should care so little that carers  have done without these necessities for so long.

We are not invisible – nor should we be so inaudible.  It’s up to you to open your eyes and ears.

Proposal One: That we award Carers Allowance to all live-in carers, irrespective of age, income or employmentjust as DLA/PIP is given to those they care for.

Why? This would not only recognise (in part) the range and responsibilities of work carers do, it would mean many carers who can fit in a little work around their caring responsibilities would be able to do so without the fear of losing this support. (And as paid work brings in tax revenue, the state may well find it is compensated for some – maybe a lot – of this outlay.)

Proposal Two: The state pays into an occupational pension scheme for each fulltime carer to reflect what they might expect to have put in if they were working , say, an 80 hours a week at minimum wage. 

Why? This would give end-of-life value to all those years in which carers worked hard full-time (the expression is meant literally) for someone else’s benefit. Pragmatically, it would also be likely save the state pension benefit top-ups to the carer at end of life.

Proposal ThreeEstablish solid practical careers advice and training to help carers train for and sustain appropriate work within their environment (bearing in mind all the work that could be done this way if the will were there: teleworking, local working, working that can be supported around care needs).

Why? This would maintain skills, support a career, restore confidence and provide longterm independence for the carer. This is not just about fairness, though it is. Its about economic commonsense.

Proposal FourTake social housing back from the sem-autonomous situation it now occupies and ENSURE that it recognises the requirements of disability and caring in the allocation of rooms. When doing so the state must alsoENSURE that sufficient appropriate accommodation is purpose-built for the disabilities of the local population.

Why? This would mean that carers are not further worried by the constraints and logistics of, say, caring for tetraplegia in a first floor unmodified flat. If you fail to support the people with disabilities in this way, much of the additional stress is also felt by those who care for them.

Proposal Five: Finally, when allocating money to support carers, the state must ensure that money is ONLY given to organisations that offer properly targeted transport-accessible help that is fit for purpose  to everyone who needs it. It doesn’t seem a big ask  – but look around and see how many organisations do this. Stop regionalising carers or subdividing them into disease-specific tranches.

Why? You may not be intending to divide and rule, but that is what you’re doing. And you end up with organisations that are increasingly remote from the people they exist to support.

Who wins? Everyone!

Carers win, because they don’t feel shafted by fate and apathy and can see that their life prospects are valued and being protected

The cared for person wins. How guilty and how annoyed wouldyou feel to recognise that state policy is ensuring your condition may be assisting in the inexorable decline of your loved one’s life?

The state wins. It puts in an insignificant outlay and targets other resources better. In return it gets a more employable, less dependent population with greater chances of a productive outcome.

Best of all,it avoids the current shocking waste of a large chunk of the human capital of this nation. 

Carers, sign up to the Carers Virtual Strike. Without harming the person you care for, you can make politicians aware of what it actually costs to care. Not a carer? Show solidarity by adding your name to our supporters page and let us know that you care that we’re careworn

Value for money – carers versus bankers

ImageToday we heard that Barclays staff bonuses (er “incentive awards”) amounted to £2.38 billion this year. That’s right. I’ll spell it out: £2,380,000,000. That’s a helluva lot of noughts.

We are told that these kind of sums are a necessary addition to the bankers’ very generous salaries because – y’know – y’all just gotta pay competitive rates in order to get the best ..yada yada yada.


No. Wait! I’m going with this one – aren’t you, fellow carers?

The bankers tell us that if you pay peanuts you get monkeys.

And if you pay monkeys what carers get, you get starving monkeys.

Now, I feel that my daughter deserves the very best of care round the clock. How can she get it from a carer who is paid £0 per hour? Surely she would get increasingly better care if her carer were paid £10, £100 or £1000 an hour?

1.4m UK carers are working around the clock, 7 days a week. That’s 168 hours a week.  And if you want to replace a single one, at agency rates (£15 per hour – to the agency, that is, not to the paid carer they often exploit), it would cost £131,400 for a year.

A lot of money? Yet you could pay for 36,225 family carers to work half-time – a mere 84 hour week – and do something to realise their own potential  for the very same sum that Barclays is bestowing on the arrogant ignorant greedy separatists they employ. On TOP of their pay, sick pay, holiday pay, expenses and pension pot.

Crikey, that bonus pot would even pay a lifgechanging Citizens Wage to 76,450 totally unpaid carers. Just sayin’.

Are you honestly going to tell me these bankers are doing a better – or more worthwhile – job? Last time I heard, no carer has ever been near to  bringing down western capitalism.

Sign up to our Carers Virtual Strike and show the cost of care (Not a carer yourself?  sign our new supporters’ page  – and show us that you care that we are careworn!)

Are carers fit for work? (And does anyone give ATOS?)

So today I am going to ask two questions, having made two points.   I’m warning you in advance, I’m Ms Potatohead, and I have my angry eyes in.

Here goes.

Firstly, There is a lot of fuss currently being made about work capability assessments – and quite rightly. They seem to be often unjust and very poorly thought out and executed. For the most cynical reasons too.

However, I am shocked and horrified that nobody – and I mean literally NOBODY – seems to have recognised that there is one group of people in Britain who are automatically expected to be capable of hard, gruelling, relentless work , however ill they might be. Today I have talked to carers who suffer everything from mental health problems and inflammatory bowel disease to end-stage renal failure. And all are still working 24/7 unquestioned – and with no mechanism for questioning.
Full-time carers are not asked to undergo work capability assessments. Because?  a)  they don’t get paid anything  and b) what on EARTH would happen if they were accidentally signed off as unfit to work?

So my first question  is aimed at campaigners for social justice, at carers organisations, and all of you with petitions  and agendas who see yourselves as  including us carers in your fight for the rights of clearly more important others. (Sorry, do I sound bitter, here?)

Why have you not noticed that we fulltime carers are always assumed to be capable of work, however ill we are?  Not just by the government, but by YOU, our supposed supporters ?  And if you have noticed, what have you done about it? (Hint: I can see a big fat ZERO from my angry corner of the room)

Secondly, We read a lot online and off about the possibility of a Citizens Wage.  And I am very pleased to hear that some people feel that no-one should get less than a basic minimum  – carers included.

But, as regards carers, a Citizens Wage will always be a bit of a sticking plaster as long as no-one is addressing the problem of the hours  that carers have no option but to  work. Folks, you are magnificently blind to the implications of a 168hr week.  In 13 years of 24/7 caring I personally have worked the equivalent of over 52 (yes, FIFTY TWO) years of 40hour weeks with no pay, sick pay, holiday or occupational pension to show for it. No-one has seen anything wrong with this. And there are hundreds of thousands of others like me. Astonishing!

So my  second question is aimed at campaigners for social justice, at all political parties and  unions, and at those who – like Mrs Jellyby –  have eyes that  can” see nothing nearer than Africa“.

WHY have you not noticed this huge and glaring abuse of state power and responsibility which is right under your very noses and has been there for decades?  And if you have noticed, WHAT have you done about it? (Hint: I can see another big fat ZERO from my angry corner of the room)

Many people are blinded by their political beliefs to wrongs which are hiding in plain sight. We carers need every every friend we can get, o yes we do, but it would be nice  to have friends who haven’t accepted in advance that the notion of carers living lives of unremitting toil and quiet desperation is fine by them!