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32. What is more precious than time?

Written by Jordan Smith, Quality Consultant at Dimensions and member of the All Together Group on The Victoria & Stuart Project.

The most important thing that we can give someone is time.

Let’s give people time to complete their advance care plans in the way that they want to.

I also believe training in End of Life should be mandatory for support teams. Full stop. Why would we make training on something like GDPR mandatory, but End of Life (which will affect everyone) isn’t?

With the Advance Care Plan, yes it might need to be made shorter, but we need to have the easyread. We cannot lose easyread, as it is right for some people. I don’t think the All Together Group are saying they don’t like easyread. The suggestions have been to change the words, maybe even change the pictures. For me, isn’t that what easyread is all about – using pictures to help make things easier for people to understand? I don’t think that is what the group is saying, get rid of easyread.

Easyread won’t be suitable for everyone, but it should be there for those that want to use it. The easyread itself is a template; what you put inside should be person-centred. We would be there all night if we tried to please everyone with one document. If we give people more of a selection, they might pick the answer that is for them.

Easyread works for a majority of people with learning disabilities and/or people with autism that I know and work with; for those that it doesn’t work for – that is where we need to throw in the Talking Mats, gestures, the Eye Gaze.

There is a reason when you go into a restaurant and there is a menu: people like the freedom to choose what they want from that menu. If you only had one starter, one main, one dessert – people wouldn’t want to attend, so this project is thinking of new ways for people to be involved and know their choices. For the easyread, if we put down everyone’s preferred choices from the All Together Group, the menu would be 100 pages long. How do we cater for the masses? Rather than the few? Easyread is for the many and not the few, and it is there to guide support workers/families on topics discussed.

Who knows you the best? Yourself? People who support you? With the End of Life resources we are trialling, we are just giving people the football pitch and the ball. We don’t know how they’re going to play on that pitch – everyone is going to play differently. There is no right or wrong answers in this. If you throw something in the bin for you, it means it won’t be in your End of Life plan and that is good for you. It doesn’t mean I will throw it in the bin too for me. This relates to death and dying – every choice is individual.

This isn’t a one size fits all approach, is it? The framework might be one size fits all. The approaches and our toolkit about how you support me may be different to how you support someone else.

For people who don’t use words: if we get it right for them, then we get it right for everyone. A controversial point is that everyone in our All Together Monday Group can use words and there are not too many of us not from the research team, just four. How can be sure that me, David, Sui-Ling, and the other David represent all people with learning disabilities and/or people with autism? We don’t.

If we gave people more time, the world would be a better place.

You have more than one tool in the toolkit!


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