Staff need to understand that people need friends just as much as they need food

John Mawman from Stoke was interviewed by staff at ASIST. he speaks strongly about the importance of support for friendship:

‘What is the point of supporting people to get in touch with their friends when they leave a day service, say just for 6 months, when that person may need to have support to keep in touch forever?

If you lose their telephone number you may need more help but if your support has gone then you are on your own… It is like when ————— left. I don’t see her now unless I bump into her and her sister in town. I knew her at the day service for a long time and I know her house is number six and that she lives near the pub but that’s about it.

Staff need to understand that people need friends just as much as they need food and they need support to keep these friends just like they need support to eat. Food makes your body healthy and friends make your brain healthy.

Friendships cant just happen they need a lot of hard work done by staff and carers. If staff disappear you are snookered unless all the other staff know the whole picture. Many times I have found out a friend from the day service has died and no one told me or they didn’t know and I have to find it all out myself.

I have to reply on staff a lot, this can make me feel like I am dangling on a string.

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Cared for with money not emotions

Tom Kohler, centre, with Gordon and Natalie Lowe

Dollars instead of emotions by Fred Kheradmundi

At our launch Tom read the story of a man close to death whose life was quite literally saved when he ceased to be a stranger. How can we challenge the ‘making of strangers’ by services and agencies? What will happen if we don’t?

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Understand, Respond, Represent?

When I met P for the first time he would just curl himself up into the foetal position, desperately trying to shut out his surroundings. He seemed terrified – in a strange place with strange sounds, people, language and food. All was new and threatening.

Legal services advised the involvement of an Independent Mental Capacity Advocate (IMCA) to find out Ps needs.

She came to see P just twice along with his social worker. They questioned the home about effective management of fluids, weights charts etc.

I sat many hours with P, in his room and on the couch in a communal dining room. Sometimes he would have his radio on, tuned to an Asian station – I had no idea what the DJ was saying, but perhaps this constant stream of familiar music and language was a comfort to him. He would tap his feet or his hand to the beat of the music. Over many visits I would hold out my hand and ask P to give me his – but he would only look at me.

Sitting with P, often without speaking, gave me a chance to see the world as he did – this quiet still man taking in a new world day by day. It was summer and when the sun broke through the clouds P would lift his face to the window, he liked the sound of the outside. Just sitting with someone for a time you notice what they notice.

P liked to be near an open window, with a clear view of the outside. He did not like being in a room that is used as a thoroughfare for the staff and residents, but enjoyed company. He liked his music on constantly, but if there were people talking in the room at the same time it was annoying to him. He liked to sit outside and would cross his arms over his lap when taking in the world.

On the IMCA’s second visit she asked me if P could communicate, whether he could make his needs understood? I put out my hand and asked P for his – he reached out and held my hand.

How can we truly represent someone we have not understood? How can we understand someone as a person without spending time noticing them and building trust?

Grapevine Advocate

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Is indifference the real problem?

Take the story of Tracey, a woman with profound learning disabilities. She left elderly parents to move into her own rented home shared with others and a team of support staff. Her love of pantomime and slapstick was the clue that led us to membership of a weekly evening circus workshop. Tracey sits in the middle of the action and giggles constantly as the different circus acts rehearse. She loves it when they drop things and make mistakes. Without prompting, the workshop organiser helps Tracey to play a full part. He gives her the juggling balls to touch and fixes plates to her chair and helps her to spin them. He says it is heart warming to know she enjoys it and that it is great having her there. People have never seen her laugh so much.

There is no question for those who have witnessed it that Tracey has fun, is welcomed by friendly people and included in the action. But, whether Tracey can go is decided not by her but by the variable willingness/attitudes/convenience of staff and by staffing levels. Tracey therefore has no control over her membership of this community group. Taking part in a community activity and meeting new people who have warmed to her and her humour are features of an independent life which the service she pays for have undermined rather than supported. Her elderly parents are anxious not to rock the boat in case Tracey is returned to them and they are unable to cope again. Paid advocacy resulted in only short-term staff changes which lapsed once the advocacy intervention ended.

The real problem for Tracey and others like her is indifference – it doesn’t matter enough to the staff around her whether she gets to do something she loves with people who like her. Whether they are funded by a block contract or a group of direct payments doesn’t matter. They don’t care about her. They just do their shift. Tracey needs people who care about her to take her and see the joy she gets from it. If they did that then they might wonder where else Tracey could find joy and her life will start to grow. The only way a person can be protected from indifference is by another person deciding she or he really matters. If nobody thinks you matter as a person there is no policy that can help your life to improve.

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