A Small Triumph

It has taken 22 months, six weeks’ worth (at a conservative estimate) of my dedicated admin time, not counting actual meetings or phone calls, possibly two hundred outgoing phone calls, approximately ten hours of Vivaldi’s Four Seasons while I wait on hold, several trees’ worth of paperwork, two sets of original documents lost in the post, three shades greyer of hair, continual and soul gnawing financial juggling every single week, one sense of humour missing presumed dead, and a whole new understanding of the term “Kafka-esque.”

But at long, long last, Nick has had his ESA benefits reinstated. Six brown envelopes arrived in the post yesterday explaining different aspects of the decision. I couldn’t understand any of it and had to ring up again today, and even the DWP advisor admitted that the wording was unclear.

I’d had a number of telephone conversations with a different advisor earlier this week, who told me that he had literally spent two entire days trying to unravel the wild goose trail of Nick’s state benefit provision - suspended, reinstated then suspended again for no apparent reason, since he had left County Durham to live in Sheffield.

He had the kind of croaky Lancashire accent that made him sound more like a favourite DJ for 6 Music than a civil servant so I was inclined to trust him. And Nick has since had a nice arrears payment into his account (even though there is no mention of this in the six letters from the DWP, or the seventh one that came today saying that he needed to send XYZ information by tomorrow, or else) so I was slightly concerned that it might be a blip and would suddenly disappear again. But after the follow up conversation with the girl on the phone today, it does seem to be a genuine rebate of sums owed and the new weekly payment has gone in too. At last. At long blinking last.

Just one thing - Mr 6 Music suggested that if I were to give up claiming Carers' Allowance, Nick would get more money because he would then be eligible for a Severe Disability premium. He can't get this while I am getting the Carers' Allowance. If I stopped, we would both be better off. Can that be right? And if so, how have I not understood this before and why has no-one ever told me? 

I have never been happy about the limitations of Carers' Allowance, which seem incredibly unfair and a deliberate poverty trap for people who are working their butts off and saving the state so many billions. I could stop tomorrow - but I have structured my current working pattern around the limited amount of hours I can work alongside the small weekly allowance, and I'm nervous. 

Can I honestly expect to return to better paid work at my age, having lost so much confidence and lost sight of my previous skills? 

If I were doing project management in the real world on the scale I've been doing for Nick, I'd be earning a six figure salary and I would have status. And staff! But it doesn't translate quite like that into the real world, does it? 

And let's face it, it's not as if I'm going to suddenly stop being a carer. I'll still be spending the same amount of time tending to bro, so would there even be time for more work? 

I need some advice. 

Nevertheless, I have a glimpse of something different, a brightness on the horizon, just being aware that perhaps another way has opened up that wasn't visible before.  

In the meantime, I am going to put all the  fluorescent post-it-note-festooned paperwork from the last 22 months into a file and throw it in the cupboard. Then Nick and I are going out for a slap-up lunch. 

Carers' Rights are Human Rights

It’s Carers’ Rights Day tomorrow.

In theory carers have rights specific to the role, but it’s very hard for me to begin even to discuss them without sounding totally cynical.

I’m getting this out of my system before resuming a positive attitude - and as I'm always keen to stress, I am one of the lucky ones, a winner in the postcode lottery with access to services and specialist support. But it shouldn't be down to postcodes or being lucky. Carers' rights are human rights, wherever you live. 

We have a right to act on behalf of the person we’re caring for, in their best interests.

We have a right to be acknowledged for our work.

We have a right to be recognised for our contribution to the economy.

We have a right to support from our employers, should we be able to combine employment with our caring role.

But - 

As unpaid carers for people we love, we fall between the cracks of services and state. 
We don’t have the right to claim holiday or sick leave from our caring responsibilities, or the right to any NHS exemptions despite the known effects of caring on health and wellbeing.

We don’t have the right to a living wage or even an allowance in line with Job Seekers’ Allowance (just let’s not even talk about Universal Credit)

We don’t have the right to earn more than £120 a week, should we somehow find time to work alongside our caring role.

We have a right to an assessment “health check” from the local authority, but most local authorities lack the capacity to do this, so it doesn't happen.

We don’t have the right to support services unless we live in the right area. Even then, we don’t have the right for those services to recognise our role or make it easier to access their help.

According to a report by Gov. uk on carers’ experience in 2016,

“What comes through time and time again is that services are fragmented, inconsistent and information not helpfully shared between statutory organisations.”

This report was designed to feed into a Carers’ Strategy, headed then by a pre-Brexit social care minister (it scarcely matters whom, as they seem to change before the ink has dried on the letterhead, yet very little has changed since then to improve the situation for carers.)

We should have the right to be heard when we ask the government for support and solutions in line with social and economic reform, yet they don’t seem to be listening. Caring is still seen as a “choice”.

Yet social care, as we all know, is in increasing crisis and for many of us there is simply no alternative.

I'm frustrated and fed up and angry. Like most other carers I can sound off to anyone who'll listen but find it hard to do much more than that because I'm too involved in the task in hand - yes, the situation badly needs to change but my brother needs me right now and there are only so many hours in a day. 

Thank goodness then for Matt and his campaign to appeal for carers' rights and for a change in the way they are recognised by the state. This affects the whole social care system - unpaid carers are that important to the status quo.

Please, whether you are reading this as a carer or if you know anyone who cares for a relative or friend, please do add your signature to this petition. Help us to appeal for a change. 
There is strength in numbers.

https://petition.parliament.uk/petitions/221220

An Appeal forChange: https://twitter.com/Appeal4Change

Biting the hand that feeds, Baby.

I really, really, really need new glasses. If you are as short sighted as me, these don't come cheap, and this has brought on feelings of panic and mutiny, because as a carer, I seem to fall between the cracks for help with the costs.

So let us get this straight.

I am on Carers’ Allowance, which is nearly £10 a week less than JSA, Universal Credit or whatever is currently being rolled out, as they say, in your area. Yet JSA would qualify me for free or heavily discounted optical and dental treatment, and Carers' Allowance does not.

To qualify for Carers’ Allowance in the first place you need to be actively caring for someone for 35 hours or more a week, which considerably more time than someone on JSA is expected to spend looking for work.

True, no sanctions or interviews or mandatory job experience at Poundland for me, or having to prove what I have done every minute of the day to seek gainful employment; although try asking most carers to account for each hour they have spent and everything they have done in a typical week of caring and if they had to log all that to qualify for their weekly payment you would probably break the internet. The whole system would explode! And who at the DWP would have time to read it?

  

In order to be eligible for Carers’ Allowance in the first place, my income had to be under the limit of £116 a week (now £120) for the two months before applying. 

It was a relief in a way to drop some hours as the combination of the four-day week I’d been doing with the sudden addition of 35 hours (at a low estimate) of unexpected brother care, was a killer. 

I was waking up panicking and fighting for breath from the sheer shock of it all. I had become a bona fide carer almost overnight, but could not be officially recognised as such until I stopped earning money.

It felt like a real catch 22 to have to agree to be poorer in order to continue doing a new job that I’d not applied for or expected to be doing with such a high level of responsibility, with no training, and essentially unpaid apart from this small stipend.

But I was glad to have it too, even while the catch 22 was staring me in the face.  If I was going to be doing 35 + hours a week looking after Nick, I might as well get some kind of acknowledgment and regular payment for it, even if I then couldn’t continue to do my job the way I had been or get paid a decent wage.

The absolute maximum you can earn as a carer doing 35+ hours of support, plus working part-time, is £185 a week. Bear in mind that the average weekly wage is £520. According to Paul Lewis the financial broadcaster, when you take into account all the hours worked by the average carer, this is not even approaching minimum wage, with no legal access to earning more.

I understand why you’d need to put a limit on hours worked in addition to your caring role but why the earnings cap? Why can’t you work for sixteen hours at a good rate? 
Unless you’re very lucky with your employer, doing such a relatively small number of hours tends to mean working at minimum wage and even zero contracts.

Why force carers, who are saving the government and NHS approximately £60 billion a year, into badly paid work? It seems particularly cruel.

Why can’t we work smarter for a limited number of hours at a good job that would help support us, the person we care for and our families, and help us from being a burden on the state?

A limit of hours worked AND on earnings is fundamentally a poverty cap and suggests that where this legislation is involved, carers are held in contempt.

  

I was never a high earner apart from (ironically) a short stint doing research at the DWP, and I’m used to living in a fairly low-impact, resourceful style, and have always felt abundant in other ways. 
But these days as a carer I realise I’m earning below the official poverty level and I bet I’m not alone.  

According to a recent interview with Caroline Dinenage, Minister of State for Health and Social Care, there is "no more financial help available" for carers. The government pot is too stretched. 
OK. But why, if carers are condemned to a low income not commensurate with the amount of work they do, are we not at least given help with the costs of dental treatment and glasses? 
Seriously, baby. I can’t be the only carer who is short sighted with astigmatism and English teeth. 

I am allowed a free eye test, yippee, but I could equally have one of those if I pick up the right coupon from the supermarket. And yes, I know there is a low income voucher scheme if you apply to the NHS through form HSC1, but it still feels insulting to make carers jump through yet another sodding hoop to fill in yet another form and justify their existence.  

I mean real help towards the things that actually matter – eyesight, teeth – that can cost a chunk of your money if you are not deemed exempted. Carers need to keep well, and most of us need to drive, (and to be able to see to fill in those endless sodding forms) and eyes and teeth need maintenance especially for the high percentage of older carers. 

Why can’t that be acknowledged with some practical support?

And as for a massage or some physio for my permanently aching back from lugging a wheelchair in and out of the car and a thousand other little daily tribulations, tell me that other carers don’t long for these and I won’t believe you. 
We need to stand up for our rights.

Voice of the Donkey

Not had time or head space to write for a while – things keep happening and being able to sit down to record my thoughts at any kind of leisure has been too much of a luxury.

But that’s why I started writing a blog in the first place, because things keep happening and I needed to keep track. So here we are, midnight, way past my bedtime on a day when I could happily have gone back to bed first thing this morning and slept for a week.

Earlier this week I was interviewed for Radio 4’s Money Box Live programme about the financial impact of being a carer. 

They asked what I did for Nick and I trotted out a list off the top of my head, thinking to myself that it sounded like nothing and feeling the usual guilt that I should be doing more and am not there for him 24/7.

People often ask if he lives with us and I still feel bad that he doesn’t – even though our house is just not big enough for the both of us, and when he did stay with us on first arriving in Sheffield last year, he fell down our stairs and broke his collarbone within two days. 

So no, he doesn’t live with us, but we see him every day and I probably spend at least three or four hours a day dealing with his paperwork, money, shopping, appointments, blah blah blah. But some people spend their entire life doing that for the person they care for; I know an eighty year old who has perhaps two hours off each day if she's lucky, and many live-in carers report a 90 hour week. 

What I do for Nick in comparison feels like nothing much - and it feels like an endless mountain. 

It's hard to explain how the time just sucks into a vortex when you're looking after someone else like this. 

And I simply could not have expected the level of responsibility and care I would be taking on. 

No-one does, I’m sure. It soon starts to feel normal though, so you take on more, until suddenly you are like one of those poor Greek donkeys staggering under an impossible weight. I used to cry when I saw them and try to get their owners to relieve the load. Of course they would just laugh and pile on another brick. “The donkey doesn’t feel it!” 
Now that donkey is me.

On the radio interview there was only time to include a small part of my duties, just the tip of the iceberg really, and of course so much of what you’ll do as a carer is often unquantifiable. But viewed from the outside, I saw that other people really did think it was a lot. 

Well, it's all relative (literally so)

But it has made me think. It has made me more proud of myself, and more determined to do a good job for Nick. 

But it has made me more angry, and more determined to speak out about carers' rights, keep lobbying for more recognition (and god knows, more financial support) and keep connecting with other people whether they are carers themselves or not. It can be a lonely old business and we need to talk to each other. I might feel like it a lot of the time but I refuse to be an Eeyore. Us donkeys need to stick together - go on with our work but make sure we raise our collective voice, echoing across the hillsides. Let me hear you, brothers and sisters!

The Donkey - GK Chesterton