A whimper not a bang

April has started with a whimper not a bang, strangled by greyness, crippled by cold and compounded by welfare, death and orphanages. That’s what the view from the hill looked like this week.

Maybe I should stop following the news, switch off twitter and bury my head in fiction and films. Maybe I should stop running and try slow walking, take a long bath rather than a quick shower and fill my days crocheting, gardening or baking. After all it might do as much good as looking at the world and watching things get worse. Read More…


We can’t hear the parents

 

All of my daughter’s life I have fought hard to make her life the best it can be. This has taken me from being a laid back individual to the verge of a nervous breakdown and back. I have in my time been labelled neurotic, challenging, difficult, over-protective, pushy, demanding and unrealistic. At times, I may have been some of these things. I do not apologise. And I know, despite the fact we are now quite settled and work well with the professionals around her, I would not be afraid to fight for her should the need arise again. Yesterday we heard that parents of young people in Winterbourne View were amongst the most disenfranchised parents in the country. How did that happen? Read More…


A Light Touch

For the last 18 months I have been delivering a short talk on the transformative power of personal health budgets. In the same way that has happened in social care it is now possible to have a personal health budget instead of more traditional services like residential or agency care.

The reception has generally been warm. But within every room are the hardline doubters. You can usually spot them at the beginning: arms folded, huddled together, frowning faces.

After the talk come the questions. With recurring inevitability the first question will be regarding financial accountability. Read More…


Spinning a yarn

My daughter takes me to places I would otherwise never go. Last Friday, on a sadly predictable grey and miserable afternoon in North London we arrived, somewhat circuitously, at what looked like an outpost of London zoo, a concrete bunker replete with iron railings, a steep ramp and with a pile of crinkly leaves carpeting the entrance.

Somewhat tentatively we made our way inside. ‘Hi Iona, so you have brought your mother with you today?’. Without a hint of embarrassment Iona grinned widely caring less about her mother, and more about the hour or so ahead. Read More…


Communication without words

Yesterday my daughter made me laugh. I asked her if she would like to help me with the garden this summer. She sighed very deeply and made her feelings very clear. When a good friend asked her if she would like a job handing out leaflets for H&SA at a Learning Disability Conference, again she sighed deeply, looked way and dropped the leaflets. We have video footage of her turning her head away as a music teacher bounces and bangs a big orange ball in front of her. It is abundantly clear what she thinks! Read More…


Whose Health and Wellbeing?

Yesterday, I attended the London Health and Wellbeing Boards conference without really having a clue about what they are. Beyond knowing that along with CCG’s (Clinical Commissioning Groups) they are an important part of the changing NHS landscape and potentially, at least, something as a citizen I should know about. Read More…


Behind closed doors

I do not know how much local authorities spend on panels I am guessing it is not thousands of pounds a year but millions.

I have not sat on a panel, nor been to a panel, I do not really know precisely how they work or who sits on them, I do not know when they are held or where they are held, I do not know what is said or by whom. Read More…


Thoughts from the Light Show

Last week I went to an amazing exhibition at the Hayward Gallery, the Light Show.

The first hall hosts what looks like a futuristic elevator, Cylinder 11. I stood mesmerised as the light pulsated. Remember the Weather Project in the Tate modern, it’s creator, Olafur Eliasson, returns with a water garden, strobing lights capture water droplets midflight, reminding me of Japanese gardens amid the volcanic landscape of Iceland. Followed up with a series of rooms all lit with a single colour but combining to produce a rainbow along the back wall. So extraordinary that strangers even start talking to each other. Read More…


I have a dream

Last week sitting in a dreary convent school in Camden, all polished floors, shiny bannisters and labyrinthine corridors, I dreamt.

There is talk of a new further education college in Camden. A place where a daughter like mine might attend. Read More…


An hour of peace

The wheelchair trundled across the cobbles, onto the decking, slid through the doors and into the lift. We emerged into the haven that is the Special Yoga Centre. Young people humming around, candles glowing and incense wafting. There was a buzz and a chorus of cheery, “Hellos”. Iona was warmly welcomed by her friends.

Read More…


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