Month: January 2014


bank-england_£24 hours after the Carers’ Virtual Strike went live, our 108 signed-up virtual strikers would cost £38,880 to replace for an average caring day. That’s FOURTEEN MILLION, ONE HUNDRED AND NINETY ONE THOUSAND TWO HUNDRED POUNDS (£14,191,200)  to pay for a year of their care.

14,191,200 is roughly the number of minutes Nelson Mandela was imprisoned on Robben Island over 27 years. A very very big number.

There are 1.4million fulltime family carers in this country.

Do the maths!

You can sign up to the Carer’s Virtual Strike at


Care to strike? Virtually, of course

Letter to IDSJune 21st  – the longest day of the year – isn’t longer than any other day for us family carers. All days are long and samey when you’re caring round the clock without support or recognition.

But this year will be different.

After decades of overwork and appalling conditions,  on 21 June we Carers will be withdrawing our labour – virtually.  (And so, unlike a real strike our loved ones will stay alive and safe and protected. Which wouldn’t happen otherwise).

As well as signing, we are putting down the number of hours we’d work as an unpaid carer on 21 June. And we are totting up the total, and what it would cost to replace us – at minimum wage and agency costs. Because we’re worth a lot more to replace than the nothing/Carer’s Allowance they currently pay us..

Every signature will also generate an individual email to Iain Duncan Smith – Secretary of State for Work and Pensions. (see picture) Appropriate, eh?

We are not striking for much in terms of what the world takes for granted. Most shop stewards would laugh at our modest demands. But no unions will represent us because we’re not ‘workers’. What we are asking for would make an enormous difference to our lives and futures compared to the ‘pat on the head’ that we currently get. We want:

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: State money ONLY given to organisations that offer properly targeted transport-accessible fit-for-purpose help for every carer who needs it.

Please join the strike. Sign and pass the link on to every carer you know. And if they find it hard to go online, please help them.  We deserve to be heard!

Stepford Lives

I’m beginning to feel that when feminism did away with the role of Fifties housewife, it just snuck around the back and rebranded itself as Family Carer.


Fifties housewives were not expected to work for money. They depended on the breadwinner instead. And they worked their socks off round the house with a smile on their face, responsible for everything and with power to change nothing but the family breakfast cereal.

You just have to look at the ads. The fifties housewife was clearly not on this earth to enjoy herself but to make life more comfortable for the rest of the family. Crikey, I’ve seen ads where the housewife was responsible for the B.O. that was preventing her husband’s promotion!

Now have a look at  the life of a family carer. You are expected to earn little or nothing. You are expected to live a life of less fun and more work than anybody else you know. You have no time off or time out.  And you’re expected to keep a smile on your face and know your position while everyone else enjoys their important lives doing important things. (And above all, never ever suggest your life is harder and less fun than others’. After all “We’ve all been in the same boat,” as so many non-carers will tell you. Right. Remind me to swap my week, and my income, and my free time, with yours one week. Just sayin).

And then on top of it you are offered support. How to manage that workload, how to cope with the difficulties of your loved one’s condition, how not to crumble, to be more efficient, to be more professional. Tell me, how much of this support is there  to make carers better carers rather than to make life better for carers ?

A plague on such thinking.

Do you want blood out of a stone? You the state are relying on US the carers to be absolutely-extra-spiffing-superly-excellent, selfless, saintly, drudges. How can you want us to be any better?

All your efforts should be to making carers lives more fun and more easy so that you don’t wear us out too soon.

We deserve it.

(Incidentally, it would be nice if we had names. I’m me, I am, not the Magic Help Fairy. I swear one day I will lose it and sock the next health or social work  professional  who scans me casually and says to nurse/colleague/a.n.other “And is this mum?”

I’m offering a crisp crackling FIVER to the person who comes up with the best response!)

Guest blog: “I loved my work and was good at it..” Onmybiketoo talks of what is wasted through poor support for carers


My husband and I were both working on a port-building project in Abu Dhabi . I was nearing the end of my contract in 2007 when the unthinkable happened. Hubby got sick with a staph infection in his neck, which crushed his spinal cord causing partial tetraplegia (quadriplegia ).  Suddenly my world was turned upside down.

After a month recovering in a UAE hospital we were airlifted back to the UK. The rest of 2007, I lived as a hobo in various hotels. At first he was in a NHS hospital specialising in spinal cord injuries, which was such a bad experience that we decided to use our savings to move him to a private rehab hospital in London. In late 2009 Hubby was assessed as needing NHS provided continuing care, I thought this would be the answer to my prayers, I had not managed to earn any significant wages since 2007 and money was beginning to get tight.

How wrong I was!

At first we were allocated a care agency who were barely qualified to provide social care let alone the specialised medical-based care that hubby needed. I still find it utter astonishing that having passed a detailed assessment to prove an on-going medical nursing need rather than social care need, people are allocated minimum wage , badly trained, amateur care workers.

We have had carer workers allocated that have had nearly as many medical and social issues as the person they are supposed to care for. One was a diabetic who didn’t have his condition under control – he could have blacked out ar any time. What would have happened if it occurred when Hubby needed help with a life-threatening Autonomic Dysreflexia attack? There were older care workers so frail with arthritis that they just couldn’t do the physical demanding work required. Most had the attitude that it was okay for them to sleep on night duty, and turn up late for day and night.

Its 2014 – five years on – and we still haven’t managed to obtain a stable reliable team for Hubby, so that I can think about returning to any kind of job where I could leave the house every day to go to work.

Having thought we had finally got something sorted last August, I started to work unpaid with a group of friends who have started up a new rail company. They’ve been very patient with my situation but I can’t become a paid member of their team until we get our care worker situation sorted out. I would be too unreliable. So how long they will want me on board when I can’t attend meetings etc I do not know.

By now in my career I should be earning between £60K-£90k  per year. Even at the most conservative estimate, the failure of the NHS to do its job has cost me £250k in lost earnings.

But it has cost me a lot more than that. It is very expensive to be disabled.  We live in a flat that is totally unsafe for wheelchair dependant Hubby; he has a wheelchair that does not totally meet his needs; he doesn’t  have the gadgets that could make his life a lot easier. If I could work I could make his life a lot easier and more comfortable.. We do try and get away on holiday as the heat does him a power of good, but that does not come cheap with all the necessities like the special travel insurance , equipment hire etc. To do that we have to live very frugally the rest of the year.

On a personal level I loved my work and was god at it and to have it taken away from me is very difficult for me handle. I enjoyed the intellectual stimulation, the interaction with all types of people, the travel  and of course the freedom money gives you to make real lifestyle choices.

Wouldn’t you feel the same?


About Onmybiketoo:

I write under the pseudonym Onmybiketoo for two reasons. One, I was an avid cyclist and two, after school I was looking for work during the time when Norman Tebbitt made his ‘get on your bike’ speech.

Growing up in our home was tough, and there was no spare cash. Dad was the only breadwinner in the family.  He was good at what he did (valve engineering) but it didn’t pay well. Mum was in and out of hospital ,so couldn’t work. Both my parents instilled in us kids that the only way out of poverty was education and hard work. If we didn’t want to end up like them, we had to work hard.

I left school at 17 with a good assortment of O-levels, I’d tried to stay on to do A-Levels but found I couldn’t get back in the groove again. So I started work in the civil service at the bottom as a clerical assistant. After a while I realised I had made a huge mistake and started to take A-levels at college night school. Eventually I joined the railways and worked my way up through the ranks, taking more courses and exams part time.  

Having built up a solid reputation over 20 years and wanting a change I moved into project management. This gave me the chance to work in wartorn Iraq in 2004  with mainly American teams rebuilding the country’s infrastructure: their water systems, sewerage, dams, railways, oil, roads, schools etc. 2004 was also the year that – during one of my holidays from work – I finally married after a very long engagement of 15 years. Three years later, I became a fulltime unpaid carer.

A day in, a day out: conjoined lives

Yesterday MsF was far from well, and so it was impossible for us to go anywhere. And I mean anywhere at all. We couldn’t leave the house. I have epilepsy and can’t drive. MsF wasn’t mobile by foot or bike. As she cannot be left alone, we were stuck at home as if with superglue.

No-one called  – not even the postie.

We were out of butter, bread and eggs. The nearest shop’s only a ten-minute walk away but it might as well have been in the next county. Luckily the milk is delivered, there was plenty of tea, coffee and cereal and we made dinner from the range of store-cupboard and freezer ingredients I have on hand for just such days. I’d call them emergencies but our emergencies are much worse than that.

I worked but poor MsF was very blue. Thank heaven for the wind-up cabinet gramophone.


Yes, we have plenty of kind and helpful friends and yes, we could have called on them. But just imagine what it’s like to be the person who calls out for help over and over again. You need to save your friends’ help for emergencies, not waste it on inconveniences. And, you know, it IS vaguely shaming to be so dependent.(Other carers will know what I mean.)

Luckily MsF was better today . Bar the drop that sent her falling back like a felled tree in the hallway. But as she missed walls and glass and hardly hit her head at all, we both reckoned she got off pretty lightly. So we walzed out of the house, through the fog, and onto the bus.

School’s out.

In town I got my hair cut, several weeks too late. MsF bought a fancy red polo-neck, and failed to find some wellies. I bought a scratchy 78 record with people whistling. We had a coffee in an old oakbeamed coffee shop. And we came home on the bus.

Hard for anyone who doesn’t have a disabling condition or fulltime caring responsibilities to understand our delight at getting outside, whatever the weather. Hard to understand how two 21st century people could have so much fun from so little incident. Hard for anyone – disabled or otherwise – to be as genuinely nice as MsF is at being accompanied all the time by her mother.

We’re like a pair of mismatched conjoined twins.

MsF has 14 hours of direct payments for care a week. That’s 14 out of 168. We can’t afford to waste it on just getting away from each other. We save it for her nights out,  for cover when I need to work away from home, or am in hospital myself.

Readers who are not fulltime carers, look around you and thank your lucky stars for all that free time you have – which you probably don’t notice you have or appreciate whilst you’re having it.

For many people its like gold dust.

Carers: the situation is getting Verse

There once was a Family Carer

Whose cupboard got barer and barer

While well-to-do smarties

From all the main Parties

Decided it wasn’t their error

I’ve been an unpaid family carer for this entire millennium. In the last week alone I’ve communicated with people who have also been family carers for years (see some stories here. Contribute your own, too). Unpaid family carers for 7, 8, 12,  13, 15, 20 years.  That’s for two, three different governments – and governments containing all three main parties.  And for all that time each carer has had a very good idea what the state has been prepared to give them.

Do you know the number? If you need a clue, it is single, big, fat and very, very, VERY round.

And yet online there are an awful lot of people making capital out of our misery by misattributing blame. But not a lot of talk about how to get us back to work, with a proper occupational pension, and (no, not ‘respite break‘, thank you but)  holiday entitlement, same as you have!

Don’t you see how wrong it is to collude with giving us no rights and then making us into objects of pity?

I  say this again – there is not a single political party who sees family carers. Full stop. Shroudwaving about how our dreadful conditions are  someone else’s fault is unattractive and improper and most of all, unhelpful. Sort it among yourselves eh? But recognise us for what we are,  what we do and that we are held over a barrel by you  because we are trapped by love and you have no desire to change this situation.

There are nearly 7 million of us carers. Over a million, full time. That’s some vote, isn’t it!

The mis-education of Ms F (and everyone like her)

Ms Fitty does a lot of domestic things at home, as I work. She cleans her room and hoovers the floors and  weeds the garden. She needs to be in my sight, you see, and it does her no good to be watching tv. When I take a break, she and I do a lot of walking out together. Young woman and middle-aged mum – poor Ms F. She should be in college, but no – they’ve said they cannot teach her. She is ‘too ill.’ (See post, Groundhog Day)

Its lucky we like each other, because Ms F  and I have spent a lot of time together, over the years. This is because she has been failed by the British education system over and over again. Thank you, Secretaries of State  Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls, Michael Gove. You couldn’t have made a greater mess if you’d intended it! Ms F has been educated in good mainstream state schools till age 19 (indeed, has continued in education till excluded last month for being  too ill – AGAIN)  but she has yet to manage more than a single GCSE pass. Art. And that was a close thing. Mr Gove would gnash his teeth.

Sorry,  that’s Michael Gove, Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls. Because you are all equally responsible.

Can I just drop my mask and weep a bit ? because for a loving mother her situation is very sad.

Imagine MsF, the brightest of my three bright children, struck suddenly down by  a condition which causes catastrophic changes in consciousness . From that moment on it’s a half-life at school: slowed down by a succession of psychotropic drugs which still fail to control the condition  -and taught largely by people who are either frightened or  ignorant of epilepsy and impatient/disbelieving/uncaring  of the problems. The state hasn’t cared that she is  clearly one of the 50% of young people with epilepsy who have achieved below their predicted capacity because of inappropriate teaching. Oh no. Schools’  failure to teach has been presented throughout as my child’s failure to learn.

In  statutory education, the troubles are of one sort. Teachers tend to feel there is little they can do. She is petted at school, but disregarded (pretty much as the state treats carers!). If she looks ‘strange’ she is sent home at once.   I keep on asking for homework to come with her – and the messages always get ‘lost’. When I complain, the school – to justify their stand – start criticising the freedom I try and give MsF. The mother as the monster. Every mother and carer of a disabled child will know what I mean.

As a result MsF and I spend term after term together, reciting Shakespeare by rote, learning about wildlife and wild fruit and wildflowers. Playing cribbage to create number bonds. Why not? Got to learn something. Yes, it’s also hard on me -a lone parent and sole carer bcause I’m trying simultaneously  to  support us all on what I can earn – but nobody offers help  so I have no option but to earn around these constraints. And succeed.

Ms F’s GCSEs are less successful: education minister after education minister has chosen not to recognise the full extent of the difficulties of a student with epilepsy

If every education minister that has ignored the exam issue had live electrodes attached to their brain for 5 mins and then was punched hard in the face without a gum-shield (causing considerable damage to lips, teeth and tongue) and then was asked to prove all their years of knowledge in an exam paper 2 hours afterwards, would they consider this to be a reasonable test of their own abilities? “(Mother of child with epilepsy)

You can’t put off a GCSE exam if you have a seizure. Ms F  gave in one english paper that was covered in vomit, she had collaped over it so many times. She failed. Again. But she wouldn’t confess herself beaten. Suck that up, Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls and Michael Gove. 

When MsF leaves statutory education the fun really starts.  No GCSEs but she still wants to get qualified! The law doesn’t oblige her to be educated – but discrimination law obliges schools and colleges not to discriminate on grounds of health. .. Hahaha

I become expert at the coded phone calls that mean ‘ by the way, we’ve decided she’s leaving us’.  Trying to resit GCSEs MsF is excluded from one school for being too ill, and is passed onto another school that specialises in learning disabilities (she hasn’t any) where they only teach Asdans. And so she loses her chance to resit the GCSE she only just failed.  Possibly the one chance to get them easily. (And, no one can explain why or what she can do with an Asdan). She’s then passed onto a college for a diploma and those GCSE resits : the diploma disappears into thin air and the college tell us (untruthfully – in terms of what they provide to others) that  they are not set up to do resits.

Undaunted MsF applies to another college, and they accept her to do a Level 1 qualification. But they find halfway through the first term of level 2  that they can no longer teach her. They have to come clean on this after all sorts of weaselly evasions  such as ‘she’s not happy’ (she’s very happy) ‘she’s not committed’ (she’s very committed) ‘she’s depressed’ (no she isn’t) have been successfully refuted.

So, now MsF sts at home, unhappy and unqualified. But still committed to learning. And I, her carer, committed to supporting her to learn.

Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls, Michael Gove: Given a young person desperate to learn, and an educational system that each of you supervised and which has never wanted to educate her,  what do you suggest MsF should do?