17. Rachel @Rocking2Stomas

Today's guest, Rachel Jury, is winner of the National Diversity Award 2018 for positive role model for disability.

She tweets as @Rocking2Stomas, and refers to herself as one of the community of ‘Double Baggers’. 

I’m looking forward to helping break a few more taboos by hearing Rachel's story today. 

Lemon lightbulbs  🍋💡🍋s

• We all need purpose – it is not about ‘catastrophising’, it is about compassion and being supported to move on with our lives
• Don’t assume that because you have said the words, the other person has understood, processed the news, consented
• If people get given life-changing news, they deserve a follow up. How are they coping? Do they need any support?
• Some subjects are taboo and need to come out of the closet.
• Don’t just concentrate on the medical, the physical. Ask real questions like “how is your sex life?”
• Healthcare professionals are afraid of getting out of their depth if people ask ‘real’ questions and they don’t know how to answer / explore honestly. They need training to be able to support people properly.
• Healthcare professionals can assume they understand – but having lived experience brings a whole new perspective. You really can’t! Just listen!
• You need to meet people where they are. People will have a very different capacity for taking in  detail and engaging with it – different individuals, but also the same individual at different points in their life.
• Being bold makes an impact – people remember. Changing a stoma bag on stage!
• The importance of connecting with others and finding your tribe.
• Helping people walk in your shoes. They will remember the experience!
• Trust people. It is so humiliating when they do not believe what you are saying. 
• Don’t have assumptions and expect people to fit into your boxes.
• Unsung heroes. Remember the people in the NHS who are not doctors or nurses but make a huge difference to patient experience – the cleaners, the porters … anyone with compassion!
• Little things matter. Little acts of kindness. A bit of banter. Humanity.
• Talk to me! I can tell you how to improve. You don’t need a formal system, just come and chat to me. Listen.
• Coproduction - it matters. I can help you!
• Language and terminology. If you get it wrong, it is at best confusing, at worst dangerous!
• Good practice is catching. Let’s be generous in spreading the word about what works and what matters.
• A Wild Card party.  … Ooh, I like the sound of that! 

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