European Working TIme Directive

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.

Right)

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?

Recognition: the most important thing to give Carers

To ‘celebrate’ Carers’ Week, my local authority wants to know the MOST IMPORTANT thing that might make my life better as a carer. One?  Believe me, there are too many  MOST IMPORTANT things! Here are a handful:

ONE MOST IMPORTANT thing:  An end to the assumption by people who are paid for their work that because you are an unpaid carer, your time has no value. Our last 2 Social Worker appointments were cancelled at 10 and 25 mins notice respectively by a social worker who valued her own time much more than ours! She has a union and has working hours governed by EWTD. No union will represent carers because they work unpaid. And I work 168h every week and have done so with very few exceptions for this entire millennium. No contest!

ONE MOST IMPORTANT thing: An end to being treated as if the 168 hour week you have worked for love is nugatory – that because you were given no pay, sick pay, holiday entitlement, occupational pension entitlement you must be a fool.  I have an Oxford degree,  and was captain of my University challenge team while I was there. I’m bright enough, thank you. That thing you say about peanuts and monkeys?  its a cliché . And only fools believe in clichés. Just saying.

ONE MOST IMPORTANT thing: At last, an understanding of the on-costs and end results of continuing lack of support. Over six weeks I’m taking 973 prescription tablets – and that’s if I don’t need the odd paracetamol or aspirin. I’ll also have to have 4 different sets of blood tests to check whether the more scary of these pills aren’t poisoning me. I have high blood pressure.  I have inflammatory bowel disease, with add-ons. I have epilepsy.  I have developed all of these within the last six years – and I’ve now got further tests planned to see if I haven’t developed a fourth nasty. I cost the NHS an arm and a leg.  I feel as if Dracula had sucked every bit of goodness out of me – and yet I have to keep going.   Why?  I eat healthily. I exercise. I don’t smoke.  I have a happy and cheerful disposition, plenty of friends, a family I am fond of. I am even friendly with my ex.  BUT I am a full-time family carer for my wonderful, clever, funny and kind daughter, and have been since the start of the millennium.Over that time alone I have worked more years of European Working Time Directive weeks than I have been alive. I am exploited by the state as free round-the-clock labour. Something has to give. And there is only one thing that can give – me.

When I collapse (and look at the above) it will cost £130,000 plus to replace me for every year my daughter is alive.

ONE MOST IMPORTANT thing: for 14 years I have had to earn around unsupported care responsibilities and so I earn almost nothing. And as the big Carers charities are happy to pay ‘the market rate’ of over £50k for a fundraiser, yet see nothing inappropriate in spending their time supporting carers to claim the miserly £61pw  carers allowance (that can be claimed only by those earning less than £100 a week and  the oversight of the claiming of which, let’s face it, could easily be done by social worker, dwp, county council, doctors surgery, all sorts of well-qualified bodies )- rather than lobbying for big improvements  in our work-life balance – I can see no way to improve my current state.

This gives me less economic resilience to crisis. OK it gives me NO economic resiliance to crisis. When I have to take a taxi home from MsF in Intensive Care at 3am because I do not drive and there is no other way to get the 8 miles home apart from walk, the £40 it costs represents a crisis to the family.

So – plenty of MOST IMPORTANTs there.

I think if there really is ONE MOST IMPORTANT thing, that ONE MOST IMPORTANT thing would be some final true recognition every day of the year of the constraints and pressures that we carers are under and a real desire to ameliorate our lot.. And not the spurious, Carers Week  here today, forgotten next week encouraging mooing that  Carers Week consists of every year.  Final true recognition. From those who pretend to care – and who do not really give a damn.

Like that’s going to happen.

I’ve said this before. I say it again. Over the last six months I have been tweeting asking for support from  prominent social activists – and not a peep.

High profile  ANGRY people – silence, my dear, silence.

Well-known feminists. We female carers might as well be invisible. (Being a carer is not sexy enough for them to make their column inches, I  guess).

Newspapers, radio, tv – ditto, ditto, ditto.

Care organisations, government departments, health professionals, charities, political parties, unions. Nada, nada, nada, nada, nada.

Lets face it, fellow carers. Apart from a peak of spurious interest in Carers Week we might as well be invisible – and after Carers Week, we will be. For another year. I don’t count that as raising awarenessi n any real sense.

So where do we go from here? HOW can we carers shout and be heard when everyone around us, the whole of society, is playing the three monkeys and not seeing, hearing or speaking out as hard as ever they can? (Or if they choose to speak on our behalf, are very selective in what they say?)

Are we carers only to survive on the awareness of carers?  Unless someone cares enough to support me sensibly I will be one of the number that the state will have to find permanent cover for – a tragedy for me and for my daughter – and a horrible expense to the UK.

At which point – particularly if the circumstances were tragic enough – all the social activists and angry people and well-known feminists and media and care organisations and government departments and health professional organisations, charities, political parties, unions and the whole boiling of proselytisers and talking shops and ‘do as I say, not as I do’ so and sos  blah blah blah will suddenly stop navel-gazing and start talking of  our plight because they will see in our plight something for themselves. 

Pah!

So, please -seeing as its Carers Week – please SHOUT OUT if you care for carers. Try and embarrass this form-over-substance world of virtual activism  that doesn’t care a damn about the little people like you and me into caring for Carers. Not as much as we carers care, obviously. But even a little bit would do..   Get them to say to the world I Care for Carers – (and then ask them what they mean by it! And then see if they won’t put their money where their mouth is..

 

Only a few carers have signed up to the Carers’ Virtual Strike caretostrike.co.uk – a tiny proportion of our dispossessed and demoralised and unrepresented and uncared for whole – but to replace just these few would cost the state over £63 MILLION  a year! And all we are asking for is what this state should thing of providing just to prevent paying out that kind of money long-term: See  Carers Manifesto https://carerwithattitudeuk.wordpress.com/five-simple-ways-to-change-carers-futures/

 

 

Shout out if YOU care for carers!

I came back from the pharmacy today with a mega bag of pills. You wouldn’t believe it, but in the next six weeks I’ve got to take 973 prescription tablets – and that’s if I don’t need the odd paracetamol or aspirin. I’ll also have to have 3 different sets of blood tests to check whether the more scary of these pills aren’t poisoning me. Erk.

I have high blood pressure.  I have inflammatory bowel disease, with add-ons. I have epilepsy.  I have developed all of these within the last six years – and I’ve now got further tests planned to see if I haven’t developed a fourth nasty..

Why?

I eat healthily. I walk, I swim, I cycle every week. I don’t smoke. I drink alcohol, but not to excess.  I have a happy and cheerful disposition, plenty of friends, a family I am fond of. I am even friendly with my ex.

BUT I am a full-time family carer for my wonderful, clever, funny and kind Ms Fitty, and have been since the start of the millennium. Which means that over that time alone I have worked more years of European Working Time Directive weeks than I have been alive.

In term of other carers’ lives, it’s not unduly onerous. I have other work which I’ve been able to fit around it. I have 14hours respite a week. MsF is mobile, thoughtful and cheerful – we get on pretty well for a mother and daughter. But I am permanently scared and it takes it out of me. And she is scared, and it takes it out of her – and me too.  Six years ago I was a different person, healthwise. Run ragged as a lone parent and sole carer, but fit as a fiddle. Finally, it has all caught up with me..

Ms F has taken to choking and stopping breathing, generally in her sleep. If I hear a strange noise, day or night , I run to her and pummel her back and she stops choking and starts breathing. But do I hear her every time? I don’t think so.  Imagine never, ever, waking up without wondering whether your child might be dead?I wonder that , every morning that I wake.  She does horrible things like having seizures in the bath (you are 16 to 18 times more likely to die in the bath if you have epilepsy – but she adores a bath so we make accommodation). She will drop down the stairs at a moment’s notice. I am pretty certain that one thing worse than having horrible intractable epilepsy is having horrible intractable epilepsy, and being quadraplegic. Her short term memory isn’t good. She microwaved a pie in a metal case for 4 minutes top whack today, before I stopped her. For one reason and another, she can never, ever be left alone.

Basically MsF has a choice of a safe life wrapped in cotton wool  or the life she would rather lead – and the stress of supporting the latter is very hard.

So, who cares for carers?

Over the last six months I have been tweeting asking for support from  prominent social activists, and not a peep.High profile  ANGRY people, silence, my dear, silence. Well-known feminists. We female carers might as well be invisible. (Being a carer is not sexy enough for them to make their column inches, I  guess). Newspapers, radio, tv – ditto, ditto, ditto. Care organisations, government departments, health professionals, charities, political parties, unions. Nada, nada, nada, nada, nada,

Lets face it, fellow carers. We might as well be invisible

So where do we go from here?

HOW can we shout and be heard when everyone around us, the whole of society, is playing the three monkeys as hard as ever they can?

Are we carers only to survive on the kindness of carers?

Only 469 carers have signed up to the Carers’ VIrtual Strike to date – a tiny proportion of our dispossessed and demoralised and unrepresented and uncared for whole – but to replace just these few would cost the state over £61.6 MILLION  a year!

And unless someone cares enough to support me sensibly I will be one of the number that the state will have to find permanent cover for – a tragedy for me and for MsFitty – and a horrible expense to the UK.

At which point – particularly if the circumstances were tragic enough – all the social activists and angry people and well-known feminists and media and care organisations and government departments and health professional organisations, charities, political parties, unions blah blah blah will suddenly stop navel gazing and start talking of  our plight because they will see in our plight something for themselves.  Leeches!

So, carers, SHOUT OUT if you care for carers. Try and embarrass this form-over-substance world of virtual activism  that doesn’t care a damn about the little people like you and me into caring. Not as much as we care, obviously. But even a little bit would do..   Get them to say to the world #ICareforCarers – (and then ask them what they mean by it!)

I’m a Carer: hear me roar

Do carers not count as ‘real people’ unless they turn out to have teeth? 

Yesterday I blogged about the horrifyingly dispossessed situation of us family carers (see Let down. Again. Have we really nothing better to do than wait?). How -not entitled to pay, holiday, pension, or any usual worker benefits -we’re clearly not even entitled to respect for our time and our independent lives from Social Care departments. Even though though comparatively well-paid social care departments are wholly reliant on us family carers working our  168hour weeks for nothing.

What you don’t pay for you don’t value, eh?

(The meeting, incidentally,  would provide huge benefit to MsF and me and cost the Social Care department not a penny. So, cynically, it’s no biggie for the social worker if she can’t be bothered to turn up, is it? Its only we who suffer the consequences! )

When I wrote about this incident I mentioned that I had a ‘secret weapon’: my identity when I am not Ms F’s mother and fulltime carer. And this identity was a piece of very unwelcome news to the department in question.

Late yesterday afternoon  I returned home to a third call from the person covering for the absent manager of the absent social worker who had let us down. Poor woman, what a short straw to have drawn.

I made it very clear that whilst any apology to me and MsF was welcome, I wasn’t going to accept the excuse of ‘miscommunication.’ It takes more than miscommunication to cancel consecutive meetings at such short notice -especially when you still manage to find the time to get a third party to do the cancelling for you. It takes disinclination, discourtesy and sheer bloody disinterest in your client.

I pointed out it was one thing to behave like this to  MsF because Ms F was supported by me, and I am articulate and forceful and still have teeth. And even then, I am a woman who has worked over 58 years of European Working Time Directive weeks in the 14 calendar years since the Millennium.Let’s face it, I’m actually pretty close to being on my knees.

So then, what about all the other carers in just my situation- and there are thousands– who have not got my gift of the gab? Not my instinctive reaction of rage? Who are that one step further – finally on their knees, beaten down, and in desperate need of help and support?  Who will help them ?

Surely the primary objective of any social worker should be to fulfil their employment compact with the vulnerable and disadvantaged people they are employed to help? The more dispossessed and beaten down and vulnerable we carers are, the more we need to view the social worker – at the very least – as being ‘on our side.’?

Would you say folks that this is generally the case? Not  this time

Carers – sign up to the Carers Virtual Strike on 21 June. Show everyone – social workers, as well as bankers – that family carers MATTER . Yes, folks, we really matter, in the real world, and our time is quite as important as yours..

Sadly, not every lion can cope with the slings and arrows of outrageous fortune forever..

Sadly, not every lion can cope with the slings and arrows of outrageous fortune forever..

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

Carers – invisible workers the unions choose to forget..

261 VIRTUAL STRIKERS on 21 June 2014 means 6,264 VIRTUAL STRIKE HOURS which would amount to  £93,960 VIRTUAL cost to the state if you had to replace them.

Just as well its not a real strike, eh?

Britain doesn’t choose to pay its family carers – but if these people died tonight (and working very long hours every single day without time off for weekends, holidays or even ill-health makes us much more likely to break or die than the rest of you)  it would cost the state  over £34 million a year to replace!

And thats just to replace 261 of us. There are over 7 million carers in the UK. Do the sums, why dontcha?

Unison, Unite, NUT, NUJ and all the rest of you unions – just think of this, and remember how lucky you are.You are able to strike to improve conditions of pay, sick pay,  holiday pay.You can refer to the European Working Time Directive. Isn’t it time you recognised the workers on your doorstep without these benefits? Carers cannot strike, and (maybe co-incidentally?) we have no pay, no sick pay, no occupational pension or holiday entitlement.

What I have issue with is that unions spend so much time talking about the heart-stoppingly poor working person – and  yet you  blank us carers – the absolutely poorest of the poor –  totally and completely. Hypocrites! Face it,  you are no better than nasty Amanda, Miranda, Belinda  – the yummy mummies with the hairbands, the black labs and the 4x4s who can never ever notice people whose children are in state school!

We’re not in your ‘gang’ – and you don’t care a toss for anyone who isn’t . You don’t recognise us poorest of poor working persons because nobody pays us for the slave-labour hours we undertake and so we can’t pay you any dues.  Cynical am I? I’m happy to listen to you explain why it is you fail to recognise us!

And, ok, you cannot strike for us, and have never spoken up for us – but isn’t it time you stopped walking by on the other side of the street?

You talk about representing the workers. Good. Why not look at us?

Please read our Carers Manifesto. Please support the Carers Virtual Strike.

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

Er?

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.

WHICH IS WELL OVER THREE TIMES AS MUCH AS 50 HOURS A WEEK.

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.