Stonebird

I visited my elderly, widowed mother yesterday; for the first time in months. Carer poverty. My mum had to buy me coffee; I have no money. How I would have loved to have been able to purchase that red coat she was looking at. My Christmas presents this year, as every year , are paltry items, from second hand stalls and pound shops. Anything above £2.00 is a major purchase, a luxury. Carer poverty; the 20 something pence an hour that carers receive is a far bigger scandal that the Banker's bonus's . Yet that is what dominated the news yesterday : highly -paid bankers are holding the Government to ransom over their multi-billion pound bonus schemes . While those of us who care for society's most sick and disabled are expected to get by on about £7.00 a day; the lowest of all income replacement benefits. My Christmas "bonus" - yes they call it that, this year, will be £10. What if we carers threatened to withdraw our services too ? We who save the UK about £60 ...

Reflecting yesterday upon how the NHS wants us local campaigners to compromise, to sign up to a document that increasingly reflects the institutional bias towards ME patients, a document that includes CBT and GET and is becoming more and more NICE biased ; all of which is an outrage, especially considering the time a lot of us have been putting into this "Consultation" process. I was driving along and it hit me, so hard I punched the steering wheel : WE DESERVE MUCH MORE THAN THIS !!! We deserve the highest possible standards of honesty and transparency. We have invested so much into this process at who knows what cost, under the most appalling conditions , we deserve the most accurate outline of a proper biomedical, consultant led ME service that there has ever been. We have got this far because we have raised our standards to the highest possible level -for that is what ME patients and carers deserve and need so bad. In my mind there is no question of compromise. Ther...