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

Originally posted on Carer Watch's 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…

View original 619 more words

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 ..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.).

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…

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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 carerwithattitude@gmail.com   or to info@caretostrike.co.uk
  •     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