2014: the year YOU recognise you need to care for Carers?

I blogged this in January – and then started the Carers Virtual Strike. Party conference time. How are we doing?

Carer with Attitude!

January. Its the time of year to set out your stand.. so here is mine.

In 2014 I want to make the whole of Britain recognise and recompense  the nation’s  unpaid  carers.  Not for justice – though it would be just. But to ensure we have a robust response to the caring crisis that is coming upon us.

I want: non-means tested Carers Benefit, a relaxation on earning constraints for carers, and an occupational pension-scheme-equivalent for all fulltime carers to reflect our long years of hard work. Additionally, targeted careers advice and training; reform to social housing ideology and practice; and a guarantee from the state that money for carers is only given to organisations that offer properly targeted transport-accessible help that is fit for purpose  to all the people need it. Full details here:  https://carerwithattitudeuk.wordpress.com/five-simple-ways-to-change-carers-futures/.

And I am expecting help from everyone – particularly all activists and…

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Working mother of a disabled child – ‘a lifestyle choice’?

A life-style choice? I have spent 14 years being told that the pitiful amount I was able to earn around MsF’s care needs was in some way pointless. Yet I was on my own and had other children to support…

Scope's Blog

We’ve been investigating the extra costs of disability. For some parents and carers of disabled children, returning to work is a necessity. In a guest post from Hannah Postgate, she talks about attitudes towards working mums. Hannah campaigns for improved SEND childcare and is the co-founder of Rosyandbo.com which sells “toys, gifts and lifestyle products for families with special needs”.

The emotions of returning to work for any mother are tough, but putting that aside just for a moment… for many disabled families, returning to work is a necessity, economically. In fact it is even more vital as the financial burden is so much greater; bringing up a child with a disability is forcing families to go without essentials and get into debt.

  • 52 per cent of families with a disabled child are at risk of poverty.
  • It costs three times more to raise a disabled child.
  • One in seven families with a disabled…

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TUC – We are workers too. Represent us!

It feels like everybody at the top is doing well but everybody else is going to have to suffer”  says TUC chief  Frances O’Grady  on the Today programme  this morning.

Couldn’t  agree more, Frances. Its just that you and I might have varying ideas of where ‘the top’ starts. For me, its with anyone who is entitled to pay, sick pay, holiday pay, European working time directive – oh and who the Unions are prepared to represent because they are ‘workers.’ I  get none of the aforementioned because the TUC  – although their health and social care work members are dependent on me working round the clock for nothing – elect to describe me as ‘not a worker.’

(To my face, on one occasion. The person in question  was lucky enough to be on strike because – unlike me – they  could withdraw their labour without risk of fatality to someone near and dear.


I am far from disputing the injustice of the last twenty years of widening pay and increasing inequality. But like most injustices the tendency is  to look at people better off than oneself. Ms O’Grady mentioned the injustice of unbridled boardroom pay increases and MPs increases against falling wages and a drop in living standards.

Shall we look downwards for a moment?

Ms O’Grady, the unjust situation of millions of carers should not be overlooked by you and the TUC  any more than it is overlooked by Iain Duncan Smith and the UK government! As an unpaid carer who is still getting the same big fat nothing for my continual 168 hour weeks  that the TUC were happy for me to receive last year, the year before, the decade before that -in fact, every year since I became a carer, I would love the unions to be much less philosophical about my fate than they have been! 

Sod philosophical!  I want the unions to be as outraged about my life, my fate,  as they would be over their own if it were like mine!

If we want a truly equal society it has to be equal for all.

The first step to being taken seriously is proper representation.

No, not as ‘community members’. We need to be counted.

So, come on, who is going to take us on?

O JOY! Getting TWO lives back


MY heart is like a singing bird
    Whose nest is in a water’d shoot;
My heart is like an apple-tree
    Whose boughs are bent with thick-set fruit

Today this Carer is blissfully happy.  Why? Today I heard for certain-sure that Ms Fitty has got her education back. More, she is going to be able to continue her education at a specialist residential college for students with epilepsy.

It’s like a dream come true.

Ms F’s future has changed overnight. Potential? This is her chance to achieve it! Independence? Ditto! Future? she’ll have one! Peer group? Check! Social life? Check! Everything she’s ever wistfully watched her friends enjoying is, at last, within her own reach.  No more sitting on the side watching. Ms F, a modern-day Pinocchio, has suddenly got the chance to become a Real Girl.

Its tear-jerkingly happy-making.

This didn’t happen by accident. After the system meltdown mentioned elsewhere, we were lucky enough to get Ms F’s old social  worker back: a wonderful, calm, kindly, smiling, unflappable woman who tweaked invisible strings and quietly restored order from the anarchy we had fallen into.

And so supported,  Ms F and I went to visit the college  – and Ms F liked the college and the college liked Ms F and offered her a place. Dependent on us getting the funding. (This, mark you, in the last week of the summer term, with 8 candidates chasing 5 places)  I persuaded Ms F’s Health, Social Care and Education representatives to meet Ms F and me round our dining room table to try and get them to understand the sheer despair of our Groundhog Days. And they did.  And then I nagged, and blagged, and wheedled, and pestered all summer and today I head that all funding commitments had been made. In writing. Technically college starts on Tuesday!

Talk about going up to the wire.

So now – as I said – Ms Fitty is suddenly  projected into a world with a future, slightly scared, excited, delighted, knuckles whited. And I,  who have  cared around the clock with so very little time off for so very long – I will suddenly become a Real Person too.

The college is  residential and there are 38 weeks of term-time a year. For the next two years I will be the kind of person who can just go out to a film, or decide to attend a class, or write a novel or if someone asks if I fancy a trip to Barcelona or a cycle across the country or even a drink in a pub, can just say yes.  And if I am ill, I can be ill with all my heart and soul and not have to get up and worry about caring for anyone but myself. Reader, I  will be just like you!

Lets face it, I’m slightly scared, excited, delighted, knuckles whited myself.

CarerWatch response to LibDems manifesto promise for carers

Exactly. Took the words out of my mouth! Just because we are paid nothing, we cannot be paid off with nothing, Mr Clegg

CarerWatch Blog

According to Mr Clegg, some carers experience ‘an unbearable burden’. As such, under the LibDem election promise, they will receive a ‘reward’ paid annually to allow them to have a break. This ‘reward’? £125 a year paid to those who receive carers allowance only. He suggests that ‘ Some carers might use the money to hire a care assistant to help them out for a week’

How out of touch are the Lib Dems?

Mr Clegg, have you ever tried to employ a care assistant for £125 a week? 

Mr Clegg, have you ever tried working 24/7 and only having one week a year off? (Many carers get no breaks at all)

Mr Clegg, are you aware that many carers are not entitled to Carers Allowance

Carers do not want you to ‘show our thanks and ease the pressure the nation’s carers face’ by giving some of us a…

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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 ..silk 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.).