Learning from parents and carers

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Listening and learning from parents and carers

I've enjoyed meeting parents and carers at our bimonthly coffee mornings. I've felt very moved by their stories, and it's also been a lovely opportunity to celebrate their amazing loved ones. I've also got really good information about what we're doing right at Share, and what we need to do more.

At the last meeting, we talked about the difficulties some students have with doing everyday things, like washing and changing clothes, when they're out of their normal home environment. This tells me that we need to do some work in our independent living skills groups about doing the same thing in different places.

Sometimes we've talked about things that are quite worrying. At our November meeting, several carers talked about their sons, daughters or siblings seeming not to feel pain, and this has got me wanting to know more. The National Autistic Society is a good source of information, and they talk about some people with autism who are undersensitive to touch having very high pain thresholds. There's research to show that some autistic people can show abnormal brain responses when a hot object is placed on their leg. There's clearly a need for more research into how people with autism experience pain. This is important because pain is there for a reason: it tells us that something is wrong.

I've asked Dr William Howie, Consultant in the Psychiatry of Intellectual Disabilities at South West London & St George's MH NHS Trust, to talk about this very topic when he comes to our parents/carers' coffee morning in January 2018. Our healthy living coordinator is also working with one of our student learning disability nurses to find out more about how our students experience pain and what would help them to know when they need to get help.

Dates for our parents/carers' coffee mornings in 2018 have now been set. Please do tell us who you would like to hear from and what kind of subjects you'd like us to focus on. Everything you say in the parents/carers' group is confidential (unless someone's life or wellbeing is at risk) and it's a nice way of meeting other people in similar situations.

I look forward to seeing you there.

Annie McDowall, Share Chief Executive

 

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