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“It was a weight off my mind to talk to someone independent about my concerns”

Olive* is a Shared Lives Plus carer who has supported two men with learning disabilities and autism at her home for the past five years. Here she tells us what it’s been like and about the new free support from bild (British Institute for Learning Disabilities), that Shared Lives Plus have offered to carers.

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“We get on well and we’ve been through tough times together, but this [Covid-19] is a different situation that none of us have faced before.”

During the current COVID crisis, James*, one of the men became very anxious as his routine was disrupted and kept shouting and swearing loudly.

Olive says, “My usual strategies to help him calm down were not available. Normally he goes for long walks** and to the swimming pool which seem to help and speaks to his sister most days. But she is working extra shifts work as a nurse and is not able to speak to him at the usual times, so he couldn’t do that either.”

She was very worried about how she would cope if James becomes more anxious and the neighbours complained about his shouting too. In the past, before he came to live with Olive, he had hit out at people when he was very frustrated and she worried he might start to do that again, “It was in the back of my mind”.

“I also worried that people would think I wasn’t a good carer if I can’t support James through this. It was thanks to the regular calls of my Shared Lives scheme worker, they could tell my worry about the situation was rising – as was James’ anxiety. My mother is also in a care home and I can’t visit her at the moment, so that was on my mind too.” Olive’s scheme worker suggested she gave the new helpline for positive behaviour support a try.

“I was reluctant to ask for help but I asked for a call.” Shared Lives Plus’ membership team, put Olive in touch with Josie*, an adviser from bild the next day.

“Josie called me when it was convenient and she was friendly and understanding. It was a weight off my mind, just to talk to someone independent about my concerns.”

“During the call we talked about some possible ways to give James additional support and strategies I could try. Together we agreed to make a daily routine for James that didn’t have to be the same as his day centre, but something that could work well for the whole family and that James could design. It included a specific time for James to get up in the morning and predictable activities each day.

Josie, the bild advisor reflects, ” I felt that James was doing very well under very difficult circumstances,  Olive was doing an excellent job but it is sometimes hard to see this when there are so many restrictions and concerns.” Josie also highlighted to Olive the importance of looking after herself so she could continue to support James through this difficult time.

Olive adds, “We’ve agreed to talk again next week, to see how James is doing. I think that will be helpful to talk again and know there’s back up when I need it.”

Lynne Harrison, Shared Lives Plus Head of Membership, encourages more Shared Lives carers to get in touch: “We’ve had a lot of calls from carers worried about how they and the people they support are getting through the lockdown. It’s not easy for anyone being at home, and our new positive behaviour support helpline will support Shared Lives carers without judgement, and maybe give some new ideas to make it a little bit easier day to day.”

If anyone would like a call with an adviser, please email and we will link you up with a bild adviser by telephone the next day. Or if you prefer you can contact bild directly to book a session online. This support is free of charge, funded by government in England and Wales for the next few weeks and available to anyone, no matter how small or big a worry you have.

*All names have been changed to protect confidentiality

** Government have now changed their advice so that people with a learning disability or autism can go out for exercise more than once a day).

Take ten minutes to chill out with Steve from bild, British Institute of Learning Disabilities