To ‘celebrate’ Carers’ Week, carers are often asked what is THE MOST IMPORTANT thing that might make their 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 to work that because we are unpaid carers, our time has no value. I still remember the time vital social care appointments were cancelled at 10 and 25 mins notice respectively by a (long replaced) social worker who valued her own time much more than ours! She had a union and had working hours governed by the European Working Time Directive. 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 the idea that 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 know a highly qualified 24/7 woman carer living in a onebedroom flat, unable to leave the person she looksafter, who was earning £80,000 a year till a heartbeat changed her life. 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 1.3 million of us provide over 50 hours of care per week- and 6 out of 10 of us are women. Carers providing high levels of care are twice as likely to be permanently sick or disabled. I have seversal health problems: high blood pressure; inflammatory bowel disease; epilepsy – all developed within the last ten years. I cost the NHS an arm and a leg. Half the time I feel as if Dracula had sucked every bit of goodness out of me – and yet I cannot be sick. 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’m 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.
ONE MOST IMPORTANT thing: Many carers can’t sustain the pressures of work and caring. Those who do work often have to earn around unsupported care responsibilities and so earn almost nothing. So we are poor, poor, poor.
And until the big Carers’ charities examine the ethics of paying ‘the market rate’ of over £50k for a charity fundraiser, yet spend their time doing more than supporting carers to claim the miserly £62.70pw Carers Allowance (that can be claimed only by those earning less than £116 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 out current state.
This gives us less economic resilience to crisis. (OK it has given me NO economic resiliance to crisis. When I have had to take a taxi home from leaving 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 final true recognition. Not the spurious, Carers Week here today, forgotten next week encouraging the mooing faux support and interest that Carers Week consists of every year. From those who pretend to care – and who do not really give a damn.
(This is an update of a post that Carer wrote for Carers Week, 2014. Guess what folks? Nothing has changed!)