Month: June 2014

The buck stops where? I write to IDS

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

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Shoulda been a kitteh – what a pitteh!

I IS KITTEH NOT CARER. I CAN HAZ TIME OFF - LOLS

I IS KITTEH NOT CARER. I CAN HAZ TIME OFF – LOLS

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).

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…

View original post 232 more words

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

Carers Week? I’m only a carer, I didn’t notice..

So fellow Carers. Tell me ONE thing that has improved for you because of Carers Week? Don’t all speak at once .

In fact, what was Carers Week about?  I go to the Carers week website and I read the following, which frankly makes my blood boil:

Caring can be a rich source of satisfaction in people’s lives. It can be life-affirming. It can help deepen and strengthen relationships. It can teach you a multitude of skills and help you realise potential you never thought you had.

Gah! Please don’t patronise us. If you want to professionalise us, pay us.  And if you can’t afford to pay us – and the UK NHS and Social Care system is reliant on not paying 7million carers to do most of the caring work in this country – just shut up blethering, why dontcha and start thinking hard how to make our lives better, ok? We carers can judge how  ‘richly satisfying’being a carer is for ourselves.

But without the right support caring can have a devastating impact. 

No shit, Sherlock.

Evidence shows that caring can cause ill health, poverty and social isolation. When caring is intensive and unsupported you can struggle to hold down a job, get a night’s sleep, stay healthy and maintain your relationships with friends and family. 

Or you might not even be able to hold down that job, get a night’s sleep, stay healthy and maintain your relationships with friends and family. I mean have you – the person whowrote this –  personally tried to work 168hours every week without a break? No? Omigosh, no, you are merely working for a charity that talks about carers. You work European Working Time Directive hours, don’t you? You get pay? Sick pay? Holiday pay? An occupational pension?  Nice. You can leave work at the end of the day and go and do something else.  You can meet your friends in a bar at the end of work to say how hard work is – because for you, the concept of ‘after-work’ actually exists. You have weekends and bank holidays to yourself. You must really be able to empathise with our lot

“When caring happens, many people are shocked to find out just how little support there can be. Help is often out there.”

We both know this to be total rubbish. Help is almost never out there. The pretence of help,  the illusion of support – lots and lots and lots of words… but actions? No there are not a lot of those.

 During Carers Week events take place all around the UK to involve carers and make them aware of the support and services available.

Hah! I didn’t hear of a single solitary thing around where I am. Nobody contacted me. No-one involved me. The support and services on offer were what they always have been.  Nonexistent. Lets be frank –  when it exists – if it exists  – it isn’t support. And it isn’t services. Its a series of halfbaked initiatives and pats on the head from organizations too timorous to lobby, too embedded in the status quo to campaign, and too fond of their own comfort zone to extend themselves for the people they are paid very decent salaries to support.

Here’s a suggestion.

All you who think you are doing a good job supporting carers? Why don’t you do your job and stay in the building night and day for, say a couple of months on end. Don’t accept any pay. Work whether you are ill or not, and do nothing else whether you want to or not.

Live on that carers’ allowance that you make such mileage of supporting us to get. Really allows you to live it up big-time, doesn’t it!

Want to take a break? Go out to a village hall for a scant hour and meet workers from another carers charity  and sit in a set of rickety chairs  next to each other, drink a cup of instant coffee and make conversation. You have so much in common – particularly that business of never being able to move from one place. Experience  the full delight of getting away from it  – you were lucky to have the cover and there was so much to say to each other. THAT should support you for another month.

They say that before you criticise someone you should walk a mile in their shoes. You should have to walk that mile before you think of supporting them too.

I am sorry. you big carers charities – what you provide is not good enough. Carers want more. Carers need more. Carers deserve more.  We need  people prepared to fight on our behalf. Where are they?

Sign up to the Carers virtual strike caretostrike.co.uk

Carers Manifesto: five simple ways too change carers’ futures

 

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.

 

 

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/

 

 

X,Y,Z – personal responsibility becomes corporate failure

Yesterday I wrote a High Noon letter

Dear MsZapata [aka  my daughter’s absent social worker (MsXantippe)’s absent boss (MsYolande)’s very likely disaffected, clearly overworked maybe underbriefed and possibly unofficial stand-in],

Following my unanswered emails of Monday 2 June (to MsYolande) and my forwarded one to you on Tuesday 3 June, I note  MsXantippe’s email response of 3 June.

This is literally our first communication from Adult Care Services since MsXantippe sent a message cancelling our second appointment for a Continuing Healthcare assessment with us at ten minutes notice. This was four weeks after she cancelled the previous appointment for a Continuing Healthcare assessment  at 27 minutes notice.  I have blogged extensively about this and its impact on the vulnerable family carer, reliant on the respect and support of the social worker.

On 19th May you (MsZapata)  rang me three times to apologise for this, blamed ‘miscommunication‘  and told me that MsXantippe would contact us and apologise the following day, and rearrange the appointment. This did not happen – and I see from MsXantippe’s email that there is no suggestion in her mind that she should do so.  Instead she mentions – as if for the first time – a Continuing Healthcare Assessment. This is the assessment  planned since March which MsXantippe has personally stymied on two previous occasions by not turning up with minutes to spare on April 26th and 19th of May.

Just to put this in perspective: my daughter’s social worker moved on in autumn 2013. ACS made no attempt to replace her until this spring when we were told we have been allocated MsXantippe  but have never met her.

My daughter is currently excluded from college (since December 2013) for ‘being too ill.’ She needs the advocacy of a Youth Support Worker to negotiate an institution that is prepared to educate her and allow her to fulfil her aims and ambitions – but according to youth services a youth support worker only be allocated via her Social Worker.

My daughter is unable to take part in the swimming, cycling and running that she delights in due to extensive seizure damage to shoulder and knee joints. An operation is not possible until her seizures improve beyond what is currently likely. A year ago we found someone who could support her to improve movement, and Continuing Healthcare agreed they could fund it . This has not yet happened simply because Adult Services need to raise the invoice from Continuing Health. They have not done so. A year adds a horrible degree  of impact to joint damage.

Both exclusion and damage have had a knock-on effect on my daughter’s socialising, quality of life and independence.

I feel like we are in Topsy Turvey Land. How long will this inactivity and lack of support continue? How are you going to compensate my daughter for the impact that this lack of action is having on all aspects of her life – health, education, social care? She has already lost months of support in education and her health has gone downhill as a direct result of not being able to access the support offered a year ago via theContinuing Healthcare team.

Can I please reiterate what I wrote to you yesterday

a) My daughter has been out of education and unsupported by a social worker or a youth support worker for over seven months now. This is a disgraceful and inexplicable  situation . Young people’s services tells me that the only person who can appoint her a youth support worker is MsXantippe  – who cannot even be bothered to meet her own appointments with us

b) Continuing healthcare support has been held up for a full year by ACS’s lack of concern in implementing agreed plans.

c) In the interim the stress of the situation has had a severely detrimental effect on my own health and I am now under two consultants’ care for two separate serious chronic and dangerous conditions – either of which may lead to death. This is not promising, is it – particularly for my daughter’s longterm prospects? 

d) Obviously the stress is increasing my daughter’s seizure activity and stress levels.

e) I am relying on you to break this circle of apathy, incompetence and unconcern with an immediate response and plan of action.

If this is not possible – and I appreciate you may well be in the position of a firefighter – could you please advise me immediately of MsYolande’s manager as I wish to escalate this situation. 

If I do not hear by the end of today I am afraid I will have no option but to go directly to the top

f) And as we are something like 3 months on from when this assessment was first proposed, I am requesting it be replaced by an EHC needs assessment under the provisions the Children and Families Act 2014 of  http://www.legislation.gov.uk/ukpga/2014/6/contents/enacted which covers young people up to the age of 25 and would allow my daughter to have all her needs looked at simultaneously. 

She cannot continue to lose her life chances because of ‘falling through the net.’

Yours sincerely, Carer With Attitude

Readers, I received no response whatsoever to this email.

Consequently MsF’s situation has been escalated to the highest possible level.