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Rebecca Johnson's avatar

I always read your blog with great interest and sympathy (solidarity?) as what you are going through is a more extreme version of what happened to me 13 years ago when I became ill and lost my independence literally overnight. I, too, have a care package, though not live-in. I get something called a ‘personal budget’ and can recruit and manage my own carers, who then stay, sometimes for up to 2 years, and build up a kind of partnership of support. If you are offered this option, I’d definitely recommend it, despite the slight hassle of finding and appointing the right people. You could ask if it’s available for you. But this year for the first time - on UC and PiP - I have been asked to contribute towards paying for the care. I cannot comprehend how someone on disability benefits can be considered well-off enough to pay £71 - my entire mobility allowance that lets me run a car and so leave the house - to the council, despite the fact that I am always under my care budget and have a surplus. Apparently they can take this money from me by force. It is an endless battle and as you say, care and carers are so essential to our society, it’s quite scandalous what low priority and regard is given to the sector and the people who work in it.

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Lis's avatar

I have just read a newspaper headline which says migrants /asylum seekers who cross the channel can get permission to work in social care, construction and farming. As yet I haven't read the whole article but just this headline ,glanced at quickly, is one that insures you have enough carers to look after you, Hanif. But it does not honour and respect the previous lives of these refugees, when will we, as a society/country, treat people as individuals not commodities to be used as seen fit by the government.

It is sad in a way to read this is the anniversary of your starting to write this, blog but being the person you are you have, over the months , often reminded us of many things where we, who are fortunate enough to not be in your position, take our lives for granted. I feel honoured to have read of your struggles and have learnt a great deal from you your writing. I look forward to reading the book and am glad you are enjoying writing , and with Carlo too. All the best,Lisx

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