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"

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.

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 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

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  caretostrike.co.uk 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? )

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

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 caretostrike.co.ukRealise 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

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.