together for short lives representatives stood at their exhibition stand

This post has been written by Julia at Together for Short Lives.

During 2016, a Together for Short Lives stand was a regular feature at the Kidz to Adultz events – sharing our resources and delivering seminars on supporting transition for those with the most complex health needs.

However, we know that many families were reluctant to come and talk to us. Why? Because we support families who live with the devastating knowledge that their child may die before them.

During 2017/18 we reflected on how best to reach those families who found it hard to reach out for support. We heard from families that they often feel isolated and lonely as people didn’t always know how to talk to them and they were exhausted by the intensive effort – physical and emotional – it takes to care for a child with a complex health condition.

julia on the telephone

Julia (author of this article) on the telephone

Thanks to the Department for Digital, Culture, Media and Sport and the National Lottery players, we have been fortunate to receive funding through the Building Connections Fund to ensure that families feel more connected to each other and to the support on offer from services. Returning to Kidz to Adultz events and speaking directly to families was a priority for us!

We know that many professionals find having ‘difficult conversations’ hard. We know that coming to terms with your child’s life-limiting prognosis is almost impossible. However, we also know that accessing information and support at the right time can allow families to really appreciate the time they have together. Our Family Support Hub offers support and information to families and can help families connect with others.

Kidz to Adultz events are high energy, exciting and busy occasions

We love being there – meeting families, professionals and other support organisations. However, we appreciate that they may not be a good time to speak to one of our friendly members of staff. We’ll be at Kidz to Adultz South on stand V19 at Farnborough. But if you don’t get a chance to visit do call 0808 8088 100 to chat about how we can support you.

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