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.
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/