cost of care

The Magic Money Tree -a MayDUP conceit?

17905234-money-tree-isolatedI was going to write about the PIP assessment I attended last week as MsF’s advocate.

But, after May’s gift (bribe?) yesterday of a billion pounds – can I repeat that –ONE BILLION JOLLY OLD BRITISH QUID-  to bring on board 10 members of the anti-abortion, climate-change-denying DUP with their electoral share of 290,000 yesterday, to prop up ‘the will of the people’ when ‘the people’ unaccountably failed – no! no! no!

So much for that stale old trope of the magic money tree. Seems there was one after all, right?

Excuse the bitterness.

In my 18 unremitting years as unpaid carer for those I love and can’t abandon, I’ve worked so  damn hard, caring 168hweek after 168hweek after month  after month year on year back-to-back and unsupported (and the last few years, caring for 2 separate people). I haven’t had any holiday whatsoever from care in 3 1/2 years. I wake up exhausted.

And I’m not alone. There’s an estimated one million other very very fulltime carers out there, working as hard as I do. That’s a helluva lot of people to disregard.

And people’s response?  “You shouldn’t be so hard on yourself. You need me time. Take a break.”

No shit, Sherlock. No need to victim-blame. We carers don’t want to be hard on ourselves, folks. No, we want as easy a life as anyone else.

But in all the time I’ve been carer you could talk of carers’  needs – you could mention, ask, demand, yell, collapse even- and there was never political will or money to ameliorate the situation for me or the other 1 million Marthas like me. Sleek elected souls who felt entitled to charge the public purse £30 for breakfast, would endlessly mouth the same mantra: No magic money tree.

And now it turns out that if May had needed us carers enough, she could have fished behind the sofa and given the whole million of us £1000 a head, without batting an eyelid. Just like that!

No magic money tree, Mrs May?

You sure as shit found a whole magic money orchard the moment you discovered ‘the will of the people’ had disappeared and you needed to buy a few extra parliamentary votes to prop up your discredited beliefs and party.


The Numbers Game

I say I’m one in a million; my father used to say I was won in a raffle – but  in actual fact I’m 1 in 8 : one of the the seven million adults who have given up  health, wealth, career and life-expectancy to be unpaid carer for an elderly or disabled friend or relative.

With love. Always with love. But not always voluntarily. Often because the was no other option. Statistically, 58% of carers are women, but my experience is that when it comes to working-aged people, it is generally women who draw the short straw.  Well, bless us, what else have we to do? It’s not like we do real work or have a real life or anything.

We’re a growing army of the forgotten and dispossessed. Every single day another 6,000 join our gang. Me, I’ve been gang member for seventeen years. And for the last few years I’ve joined the inner circle and become – not one in a million but one OF the million who cares for more than one person.

Between the two I haven’t had a holiday from caring for well over three years.

SO, what’s all this  to do with the price of fish? All very sad but what can be done etc. ?

Well, number one, in the run-up to the election, all sorts of figures were being bandied about but blow me not this one: We carers are estimated to save the state £132 billion per year (and that doesnt include lost work input and lost tax).

Lets dig deeper:

  • Over 3 million people in the UK juggle care with work.  How the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.
  • Carer’s Allowance is the main carer’s benefit: £62.70 for a minimum of 35 hours care a week, equivalent to £1.77 per hour – far short of the national minimum wage and £10 a week less than JSA. (And of course you may be working up to 168 hours a week for it). CA is means tested. Earn over £116 a week and it’s gone.
  • Over 1.3 million people provide over 50 hours of care per week- and 6 out of 10 of us are women.  Carers providing high levels of care are twice as likely to be permanently sick or disabled.
  • There is –  unsurprising – a high correlation between being an unpaid carer and poverty. So maybe it is also unsurprising that  its women who have a 50:50 chance of having been an unpaid carer by the time they are in their 50s. (Men have to get to 75 to reach the same statistic)
    (all figs from CarersUK)

The Conservative manifesto made the infamous pledge that you – yes – YOU, the person reading this, the one with a job, wealth, health, a career, a pension and a future – YOU  can give up your work for a year to care unpaid for someone. Not sure what you’ll live on? Wind and running water, like theis pledge was written with?

So this week is CARERS’ WEEK. Who will give up their job unpaid for just one week to spell an unpaid carer?

Don’t all speak at once

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.

Carers Strike Today – VIRTUALLY

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

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.



Into the Abyss … (or Where is Care? )

I am becoming really ill.

And then what happens to MsFitty?

Always very active  I’m suddenly finding it very hard to get about. I limp from a – b. I feel as if all the blood has been sucked out of my body. I keep falling  into some kind of coma.

I’ve got two quite nasty things wrong with me – I’m in a lot of pain and on a lot of different drugs . These are  horrible in actuality and potentiality.  I have to have blood tests every 2 or 3 weeks. It is hard to know whether I’m suffering from illness, or side-effects, or conflicts between the meds. Or all three.

I’m very angry with myself for being a weakling, and I keep on pushing myself,  but the lists of tasks are endless, the responsibilities are mounting higher and higher and every day the world starts spinning and  I suddenly have to lie down. And every time I lie down I pass out…

In the middle of this we have had no contact from MsF’s social worker at all – no apology, no rearranged appointment, no word or email or letter or anything. We have had no contact from her boss – even though I asked her to contact me yesterday as a matter of huge urgency. And MsF has no Youth Support Worker to follow up her missing education. No-one is following up the fact that the education services just turned their back on her.

Ms FItty is fallen into the Slough of Despond.

So who is supposed to be ensuring there is a Youth Support Worker on her case? Well, bless me, it’s Ms Fitty’s absent, disengaged, unresponsive social worker. The one who hasn’t managed to raise the invoice which would allow Continuing Healthcare to fund their promised support for MsFitty for a full year now and thereby improve her life and mine.

We have fallen into a big black hole,

Yet Ms Fitty needs to be supported to finish her education, to improve her health, to live an independent life – and if anything happens to me, that need is more urgent than ever!

If I am not able to support Ms Fitty it will cost the Local authority a lot of money to replace me.  It will cost them a minimum of £131,400 a year, for someone to be by her side, day and night round the clock. Assuming there is no need for overtime, or holiday pay  or sick pay or European Working Time Directive anything else that MsF’s social worker  thinks necessary for her own existence, though not for mine.

If MsF and I had had reasonable support at all from our local authority, I might not be in the situation I now am.

I started the Carer’s Virtual Strike to make everyday people  understand  the stress and strain that we carers are under. Six months later, I feel as if I have been a voice shouting in the wilderness

Join the Carers Virtual Strike that people like me cost a fortune to replace when you wear me out so recklessly and wantonly



Let down. Again. Have we NOTHING better to do than wait?

Hope-WattsRemember nearly 4 weeks ago when  an urgent re-assessment of MsF by Health and Social Care was cancelled at 27 minutes notice? (read  Carer With Attitude: “Not bitch!” A woman of no importance!)

It has taken the Social Worker this long to find another time she could agree, even though I gave a list of times we could make ourselves available as long as my arm. (I would believe more in this delay if she hadn’t cancelled our last meeting because of a ‘prior appointment’ – but I caught her in her office at the very moment she was due at ours.)

We thought briefly that we had arranged an appointment for 2 weeks back but she rang up shortly afterward saying “I’ve just discovered I have a hospital appointment – so of course that won’t do.”  Not like anyone else’s hospital appointment, clearly.

Anyway,  for three weeks –  THREE full weeks -the date has been fixed for today, Monday 19th May 2014 at 10.00 am. I have the letter in front of me, dated 30 April, confirming it.

I was just tweeting the fact at 9.45 when  – guess what – the phone went!

Yes, that’s right. We’re sitting here, poor helpless, hapless, flaccid, unimportant people of no importance. We have nothing better to do

CANCELLED. Again. This time with 15mins notice!

There’s really no need to take that tone, I’m only passing on a message,” said the disembodied voice at the other end of the phone huffily. Like that matters to me. To Ms F.

Isn’t it the department on the phone?  WHO is taking responsibility for this appalling discourtesy, I demand?

The social worker’s boss. But she’s off sick too. Can I have your name?

Here I pull my secret weapon out – for, dear readers, I have one – and the tone changes dramatically. This makes me even crosser than ever.

WHY should ANY secret weapon be necessary for a public servant to fulfil their employment compact with the vulnerable and disadvantaged people they are employed to help?

Here is  a S-H-R-I-E-K on behalf of Mrs F, on behalf of myself, on behalf of all these millions of disempowered, unimportant carers who are clearly seen as worth no more than to be treated as invisible people by disrespectful workers who are very keen on exacting respect for themselves and their working lives.

Tell me, if we were paid more than 0p per hour, if our time had any meaning, would they behave to us like this?

As I said last time – the vocabulary of public services is stuffed with ideas of ‘respect’ for ‘service users’.  But when will they realise that they get judged by their actions rather than their words?  And cancelling a three-times cancelled appointment  without backup  minutes before it was due to take place says loudly and clearly that your client (the young woman with epilepsy) has obviously nothing better to do with her time, and her mother (the carer) is doing it all for free so what does she count for anyway? Its not like they  were  going to be going anywhere, is it?

Yes, I am sure that working life as a social worker is stressful, I am sure she may have been ill, I am sure she feels overworked. But she is dealing with a woman (me) who has worked  nearly 60 years of EWTD weeks since the millennium – a lot more more than my entire calendar age, for goodness sakes, unpaid.  A woman who finds it difficult ever to be ill and ‘off work’. A woman with two chronic and dangerous diseases brought on by over-work, who is now being investigated for a third. I’m not missing any appointments, this end. I’m not taking any days off work. And if ever I am too ill to care for MsF I have to find someone else to do so. Surely the Social Worker could have made the same arrangement at her end? Its not rocket science.

It is precisely because  family carers are not paid and therefore not valued, that a comparatively well-paid social worker is able judge her own relative importance  on what she sees as purely financial grounds and behave with disrespect to what she sees as the impotence of those she is employed to look after!

Join the Carers Virtual Strike on 21 June. Show everyone – social workers, as well as bankers – that family carers MATTER . Yes, they really matter, in the real world..

Oh, and a copy of this blog is going to the Social Worker in question. And her boss. And her boss’s boss too