Category Archives: Carers

The situation of carers in Suffolk

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!

Expenses – and why I don’t claim them

I have just been asked why I have claimed no expenses since my re-election in May. “A recent FOIA request by Ipswich Spy has produced the expenses claims put in by the 75 County Councillors since the election at a staggering £25,000…  Four councillors have claimed more than £1,000 and several councillors have claimed none at all. ” Well,  I’m one of those who have claimed nothing.

In fact, as your County Councillor,  I don’t think I have claimed any expenses  whatsoever for the last three years.

It’s been a (rather small-scale) point of principle.

Lets not get this out of proportion. You’ll be pleased to know that there isn’t a great deal that a county councillor CAN claim for at the best of times  – and this is as it should be.

But I have not claimed for travel on council business – even when Tory cuts mean that there are no longer buses running to get me home; I have not claimed for meals or coffee to sustain me on the days when I leave home at 7 and don’t get back till late;  the wreaths I lay  to celebrate Woodbridge’s war dead have been paid for out of my own pocket – and on the odd occasion work has taken me to London I’ve stayed with friends rather than cost the hard-pressed council-tax payer of Suffolk a single penny.

I am a carer for someone who often cannot be left safely, but  even here I have used a patchwork of friends and favours to provide the required care. (Staff at Suffolk CC’s Endeavour House have been wonderfully supportive  on a couple of occasions when I’ve had real emergencies.)

Please note –  I don’t want to sound self-righteous, I’ve been making a point. I want to show up the contrast  between what is possible and what some others think it appropriate to claim for – legitimately – at a time of fiscal belt-tightening. There are councillors who have duties that require a lot of transport and it seems only fair that it is funded. But if they could only claim for using public transport maybe Suffolk would have better public transport?

(It is also very important that the business of being a local councillor is not restricted to those who can afford it. We need more participation from people of all ages and backgrounds if we want to deliver real democracy in decision-making. But maybe this is more about what the average councillor’s  allowance is, than how much they can claim in expenses.)

Now I think  being a full-time carer as well as a full-time county councillor makes me a better full-time county councillor – just as I think that being a county councillor who travels by public transport and bicycle will have a better understanding of the problems of rural transport than one who travels by car with expenses-funded petrol. My caring duties are not diminishing.  In the future  I may have to claim for emergency care cover as and when I need it.  And, as I have  mild epilepsy, transport can be very difficult when there are no buses and I  am not well enough to cycle.  But until there is a real need, I won’t be claiming.

I suspect if there were more in my position representing you, some significant and important council decisions might have been/would be different – and the outcomes for the people of  Suffolk  better.

If you have strong feelings on this matter – please contact me now -either by commenting below or by email/twitter etc

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?