Tag Archives: Carers

The situation of carers in Suffolk

EADT’s coverage of the problems faced by Carers

Brilliant to see the EADT taking the issues faced by unpaid carers – particularly working-age women – so seriously.

Their coverage  today:

http://www.eadt.co.uk/news/carers-don-t-want-cake-they-want-realistic-support-says-campaigning-councillor-1-5074532

highlights many of  the problems and inequities faced by women carers  in Suffolk: longterm stress,  poverty, loss of career, pension, loneliness, the often infantile and wholly inadequate nature of the ‘support’ on offer.

And as the LibDem Green and Independent Group’s spokesperson for Women I suggest the problems experienced by carers would be less hidden if Suffolk County Council made themselves more aware of the challenges facing women in the county!

A Plea: We All Can Care for Carers!

This week is Carers Week – and it’s come in balmy weather. My daughter and I have picked elderflowers and made 2 gallons of cordial. In between the elections and my full-time work and the emergency appointments with London specialists.

She and I are very much together, poor soul, whether she likes it or not. She is nice to me about this – but it must be a dreadful burden to be in your 20s and have your mother so very much in your life.

It’s nearly 17 years since the day she dropped like a stone as I baked her birthday cake and in a blink of an eye we went from real  people in our own right with lives to lead and places to go, to  carer and cared for: symbols, stereotypes, political footballs -people who were somehow less important, less valued than others. We lost friends, we lost caste, we lost identity.

Like most family carers, I started out bewildered, unrecognising, waiting for things to return to ‘normal – a day that would never come. Indeed it was years before I realised I was a carer – and that as well as providing help I needed help myself.

For, make no mistake,  being a family carer is hard. Being ‘on duty’ – responsible for keeping someone alive – 168 hours a week, every week, is quite as dreadful as it sounds. After a while, you have difficulty with everything: working, sleeping, socialising, existing.

Worst of all, you become invisible. Your work as a carer takes place in isolation, and though invaluable, is not valued. In fact the government refuses to call it work (though the cost of replacing you if you fall ill suggests the reverse). A family carer has no workmates. If you manage to keep a job on top of caring – and it’s no joke as a full-time carer – your colleagues may disregard you, disrespect you – even (obscurely) think less of you. People forget about you, you lose your place in social plans, in activity groups, in parties. You may even get called a killjoy because you can’t leave the house!

So of course, you are lonely. (And no, you don’t get used to it.)

To make this worse, family carers are often not seen as people in our own right but are defined by the condition of the person we care for: carers for dementia, for ASD, for Parkinsons, epilepsy, stroke, etc. Strange, as our own problems are easily identifiable and universal: exhaustion, stress, worry, loneliness, despair. Family carers have twice the suicide rate of non carers. Go figure.

How to help? Carer charities set up initiatives to encourage carers to be ‘better carers’. Er.. why?  What is really needed is for society to be better TO Continue reading A Plea: We All Can Care for Carers!

EVERY day should be Carers’ Rights Day

So, today is Carers’ Rights Day, the day when we celebrate family carers and tell them what they are worth..

(Fifty-nine pounds odd a week, if they earn less than £100, that’s what.  Whoopee)

I am offended by the whole concept of a Carers Rights Day – a day when well-paid professionals and media pundits gather together to pat each other on the backs and moo “Ooooo – we care: we reeeelly care for your plight, pooooor yooo. ”  The brutal truth is that they don’t.  Society doesn’t. Successive governments don’t.   And when I once asked Unison strikers why they were not striking for family carers they memorably replied “Because you don’t work!”  (That is, because we Family Carers don’t have paid hours, overtime, sick pay, holiday pay etc etc we don’t work. It’s iniquitous)

Carers wouldn’t need a Carers Rights Day if the state had ever given Family Carers any meaningful rights.  And the right to be accepted as a worker rather than patronised as a rather dim and unworldly saint  comes top of the list.

If carers were seen as the workers they are, the real cost of that care: the working hours, the loss of careers, the impact of poverty and poor health, the absence of employment-related pensions – all these might be factored into the support offered to them.  As it is, people suggest they may like a session of aromatherapy!

In this country the welfare state has traditionally relied  on the love carers feel for those they care for to save the state the real cost of that care. Yet carers suffer from blighted careers, poverty, poor health (fulltime carers are twice as likely to be in bad health than their peers) and can look forward to little more than an impoverished old age.  Thousands of people like myself have worked unsupported 168 hour weeks for years – in my case for the whole of this millennium. You know, its possible we might just get worn out!

This is not only sad and bad, it is expensive.  How much does it cost to replace 24/7 specialised, knowledgeable care? Five years ago when the cost of home care was estimated it varied between £18 and £27 per hour depending on whether it was daytime, evening or weekend. Goodness knows what it is in 2013.

So what’s the answer? Once again – to the sound of one hand clapping  – I’m suggesting the following serious revision of how carers are supported and viewed. Its not unduly expensive or ambitious. Just common sense :

  1. Carers Allowance should be viewed as a wage rather than a benefit, awarded to all full-time carers  (exactly as DLA as awarded to those who are eligible)  Currently family carers can claim £59 odd a week -if they don’t earn more than £100:  meaning carers are expected to live and further their careers on £8368  a year. If, of course you earn a little more than £100 a week, you get no carers allowance at all. These folks have hearts like greasy bullets, don’t they?
  2. The state must further relax rules on ‘other employment’ to allow carers the ‘luxury’ of being able to work, and have some non-caring life outside their responsibilities.
  3. The state should pay into the equivalent of an occupational pension for carers to accurately reflect (ok at minimum wage) the real hours spent caring. This could be established by reference to the cared for’s DLA returns and would give carers the prospect of a securer old age with recognition of what can be decades of real – if unpaid work.
  4. When a family carer is bereaved they are simultaneously made redundant. The state should set up obust and appropriate  training to provide  carers for genuine, satisfying jobs when their caring roles (often sadly) end. This isn’t a luxury – it is a reward for all the unpaid work they have done without prospect of career advancement. 
Every day should be Carers Rights Day. Everyone should recognise how close they are to being either carer or cared for!

4 Simple Cheap Ways to change Carers’ Futures

In this country we rely on the love carers feel for those they care for to save the state the real cost of that care.

Yet carers suffer from blighted careers, poverty, poor health (fulltime carers are twice as likely to be in bad health than their peers) and can look forward to little more than an impoverished old age. This is not only sad and bad, it is expensive.  How much does it cost to replace 24/7 specialised, knowledgeable care? If you wear me out the hours alone cost around£55,000  at minimum wage to replace – assuming you could get anyone to work them for that money and do a good job.  Five years ago when the cost of home care was estimated it varied between £18 and £27 per hour depending on whether it was daytime, evening or weekend. Goodness knows what it is in 2013.

People like myself have worked unsupported 168 hour weeks for years – in my case for the whole of this millennium. You know, its possible we might just get worn out!

So what’s the answer? I suggest the following serious revision of how carers are supported and viewed. And looking it I don’t think its unduly expensive or ambitious. Just common sense:

  1. The Carers allowance should be seen as a wage rather than a benefit, and awarded and not meanstested (exactly as DLA as awarded to those who are eligible) rather than clawing back sums in the long-established Scroogery that currently exists. Currently you can claim £59 odd a week -if you don’t earn more than £100:  meaning carers are expected to live and further their careers on £8368  a year.
    If, of course you earn a little more than £100 a week, you get no carers allowance at all. These folks have hearts like greasy bullets, don’t they?
  2. The government should further relax rules on ‘other employment’ to allow carers the ‘luxury’ of being able to work, and have some non-caring life outside their responsibilities.
  3. the government should agree pay into the equivalent of an occupational pension for carers to accurately reflect (ok at minimum wage) the real hours spent caring. This could be established by reference to the cared for’s DLA returns and would give carers the prospect of a securer old age with recognition of what can be decades of real – if unpaid work.
  4. a solid and appropriate scheme set up to train carers for genuine, satisfying jobs when their caring roles (often sadly) end. This isn’t a luxury – it is a reward for all the unpaid work they have done without prospect of career advancement.

I have suggested this many times before to the sound of clapping from fellow-carers, but of one hand clapping from those in power.

I’m tired of being vox clamantis in deserto.

Isn’t it time to listen to the people who best know what we’re talking about?

Carers’ Rights: a Modest Proposal revisited

I  have written many times  about UK Family Carers  – and how little they are considered in our society (link here).

Over the last 13 years, I have been pretty angry on behalf of myself, and all the hundreds of thousands like me – and I have not needed to focus my anger on the right or the left. From the family carers’ viewpoint you are both equally guilty.  In a world where half the people tell us that ‘if you pay peanuts you get monkeys’  and the other half maintain that workers have very clearly defined rights – but refine the term ‘workers’ to exclude  representation or acknowledgement of many of those who work the hardest – family carers have   for years suffered a dismissive double whammy as  ideological form outweighs any consideration of content..

An estimated 6.4 million people in the UK  provide unpaid care to those they love and they are saving the UK economy billions every year – more than the cost of all social care services and all private providers combined.

How many billions exactly? it is hard to estimate – but if you had to replace a full-time carer’s 168hours a week  at the Local Authority rate of £18 per hour  it would come to £157,248 a year. Without on-costs, sick pay, holiday pay or overtime. Most carers are not full-time – but well over a million are.

Many – indeed most – carers struggle with dreadful daily conflicts between work and care, and an estimated one million have had to give up work or reduce their hours, loses them an average of £11,000pa. And often a lot of freedom, companionship and self-esteem in the bargain. There’s a wolf at every carer’s door – and over 4 in 10 say caring has pushed them into the red. As money worries cause stress, its hardly surprising almost half of the carers surveyed said they were suffering from anxiety and depression because of finances.

It’s a big price to pay for love. Yet carers don’t expect to be thought of as noble: they do it because there are no other options . But it isn’t surprising that they would rather be thought of as the workers they are rather than the saints they are not.

These days,  while we could do with all the support we can get, family carers find ourselves once more at the mercy of the uncaring – those determined to make political capital out of our misery – scaring us with untruths, half-assertions and downright lies. (Amongst these I am particularly impatient with the Labour party in opposition, who, after 13 years being wholly careless of carers,  now suddenly and miraculously care frightfully for our plight. “Oo we doo care,” they moo. “Your problems are due to the Coalition cuts.” No they jolly well aren’t, you weasels. Our problems remain the same as they were when you held the purse strings – and I’d respect you a bit more if you admitted this) .

I’ve argued many times that the money spent on supporting carers was improperly focused. Carers live on the breadline – yet when respite care is funded it has to be in real terms and therefore  at a rate that would stagger one, considering how little the carers themselves are required to exist on. I’ve postulated that if this kind of money was ploughed directly into the carers’ lives rather than aromatherapy and sympathy and NHS Trust initiatives,  it might go further to help. Carers need circuses as well as bread: and what use is respite care if you can’t afford to do anything in your time away?

So what has happened? Someone listened!

The Coalition government  allocated £400million over 4 years and given directly to individual carers to give carers breaks. The rationale is, as the Chief Executive of the Princess Royal Trust for Carers puts it, ”Without these vital breaks, carers can often reach a breaking point where they can no longer continue, and their own physical and mental health deteriorates as result.” Yes.

Today I was offered a carers respite grant – the first sign in thirteen years of fulltime caring that the powers that be think of me as anything other than a draught horse or similar beast of burden. Thank you, Suffolk Family Carers. Thank you, Coalition government. Thank you, Paul Burstow, the man behind this allocation.

And I feel better already – it’s the thought that I have value as a person in my own right.

Please, if you are a fulltime carer, ask your local authority about this, NOW. Details on the iCare budget for carers in Suffolk are here

 

Of course this grant is lovely but there is much still to aim for  – there are not many people either on the political right or left who wish to acknowledge the extent of  family carers problems. Possibly because all past governments have been uncaring as to the carers’ plight.

On the right, there is a lot of head-patting and the suggestion that “if only the magic money fairy existed” all could be made better…but sadly the right don’t believe in fairies.

The left wing tend to refuse to acknowledge the situation at all, in case they might have to admit their past share of responsibility. Whenever I’ve mentioned how badly carers have always done under various governments,  certain types of people have refused to acknowledge this as a problem. They skate over the subject completely, returning instead to the iniquitous terms and conditions of various waged, pensioned, holiday-overtime-and-sick-paid employees.

It is clearly more comfortable for such people to argue the case – for example – that paid care workers are disgracefully badly paid. Which is incontestable – but hardly relevant comment to the plight of the unpaid person working a weekly 168 hours. (Yes, that’s what 24/7 caring is: 4.5 weeks work every week. On call, night and day, without let for years – decades, maybe. And all for a carers allowance of 33p per hour if you don’t earn anything else.) This isn’t a hardship, contest, folks. But if it were, unpaid carers would win hands down.

So what’s to be done?

I reiterate my Modest Proposal for Family Carers. And looking it I still don’t think its unduly expensive or ambitious. It is, however, just. As follows:

  • Ensure the state counts the Carers Allowance as a wage rather than a benefit, and awards it separately from earnings or other benefits(exactly as DLA was awarded to those who eligible) rather than clawing back sums in the long-established Scroogery that currently exists;

  • The government should further relax rules on other employment to allow carers the ‘luxury’ of being able to work, and have some non-caring life outside their responsibilities;

  • In return for the carers forgiving the government for giving them an allowance so much beneath the minimum wage , the the government should agree pay into the equivalent of an occupational pension for carers to accurately reflect (ok at minimum wage) the real hours spent caring. This could be established by reference to the cared for’s DLA returns and would give carers the prospect of a securer old age after all that work.

  • There should be a real and appropriate scheme set up to train carers for real , satisfying jobs when their caring roles (often sadly) end. This isn’t a luxury – it is a reward for all the unpaid work they have done without prospect of career advancement.

(I don’t think we can afford to do much about the European Work Time Directive or the sickness cover although, when this country was prosperous we jolly well should have tried to) beyond recognising and respecting those 168 hours on duty each and every week ill or well.

The bottom line still is that we rely on the love carers feel for those they care for to save the state the real cost of that care.

We, the people of the UK need to remember that Carers ARE the magic money fairy.

Tell me who else gives billions of pounds a year voluntarily to the state and expects so little in return?