23. Angela Cornwall - Speedy Boarding. The passport to top health care

Wild Card - Whose Shoes?

Today I'm talking to Angela Cornwall, with thanks to Carol Munt (Episode 7) for introducing us!
Angela uses her experience as a family carer to make great things happen. She designed a ‘passport to care’ to make sure clinicians have exactly the information they need to deal with a rare condition, such as Diamond Blackfam anaemia which Angela’s daughter has.
I love it when people come up with simple ideas that would be useful for other families. But they often find it difficult to get their solutions adopted -
Angela's 'Speedy boarding' makes sense!
Angela is practical and proactive and, like Carol, full of common sense and wanting care to be the best it can be AND cost effective.
Lemon lightbulbs (lots!) 🍋💡🍋

• With rare conditions, patients and family carers are taught by expert clinicians. Don’t underestimate them or dismiss them as ‘anxious’
• If you have a rare condition or specialised needs, a ‘passport of care’ is a great way to record your needs so there is no confusion or time wasted: Speedy Boarding!
• Pathways and protocols are often inflexible. “We don’t do transfusions at the weekends” can be dangerous
• Family carers are very experienced! They care for the person 24/7 and learn what is required. Listen to them
• Give patients and family carers the training they require to manage their own conditions and minimise hospital stays
• Personalised care is not only good for the patient but can be highly cost-effective for the NHS and more rewarding for staff. Try it. Some great examples here!
• Collaboration is key and can remove the trauma!
• Don’t overcomplicate things - simply listen and respect the expertise of patients and family carers. Be open to simple solutions.
• Examples – a clinical passport of care, invented by a family carer after having to save her daughter‘s life when the protocol was inflexible, or practical ways to avoid sensory overload and meltdowns
• It can be a sign of strength, not weakness, for clinicians to say they don’t know
• You can’t be expected to know everything about rare conditions, but the person with the condition and their family know all about it!
• Peer support is key! Check out DBA UK charity for Diamond Blackman Anaemia
• Help children with complex medical needs have normal experiences – rafting, kayaking and marshmallows around the bonfire!
• Environment matters! What a great idea to design a children’s hospital with glass walls so children can see out, stay connected to the real world and heal!
• Fresh air, going outdoors, having fun - helps speedy discharge!
• Building the confidence of patients/ family carers - help them feel in control and able to manage medical needs
• Holistic therapies - good for everybody!
• People with autism can find it very hard to access healthcare. Design care to make it possible for them to have a good experience.
• A reminder to respect and value the expertise and dedication of family carers!

Who can help Angela spread her ‘passport to care’ to more families who would benefit?

Further resources:
Speedy Boarding passport to care
Support and benefits for carers
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Hoofdstukken

1. 23. Angela Cornwall - Speedy Boarding. The passport to top health care (00:00:00)

2. Angela is a family carer. Angela‘s daughter has Diamond Blackfan Anaemia, a very rare condition. (00:01:57)

3. Angela designed a ‘passport of care’ to ensure the right care was delivered effectively: Speedy Boarding! (00:02:46)

4. Pathways and protocols are inflexible. “We don’t do transfusions at the weekend,” (00:03:35)

5. Family carers are very experienced! They care for the person 24/7 and learn what is required (00:04:24)

6. Let’s develop the expertise so that we spend as little time in hospital as possible! Shared decision-making. (00:04:45)

7. This is specialist clinical information – yes we want to know about it! (00:06:14)

8. With rare conditions, family carers are taught by expert clinicians. Don’t underestimate them or dismiss them as anxious. (00:06:31)

9. So, why the passport? What is it? (00:09:04)

10. Cost effective personalised care. Collaboration is key. (00:10:00)

11. Let’s remove the trauma! (00:11:35)

12. Simply brilliant! The power of simple solutions. (00:13:13)

13. Examples – a clinical passport of care. (00:14:27)

14. It can be a sign of strength, not weakness, to say that you don’t know. Be honest I (00:16:30)

15. Peer support is key! Diamond Blackfan Anaemia - DBA UK charity is born! (00:17:24)

16. Helping children have normal experiences – rafting, kayaking and marshmallows around the bonfire! (00:20:17)

17. Special work and connections happening around order a Children’s Hospital in Liverpool (00:21:58)

18. Designing a Children’s Hospital – with glass instead of walls, so that children can see out and heal ! (00:22:39)

19. Fresh air, going outdoors, having fun - the way to maximise health and go home! (00:27:46)

20. Building confidence with parents of sick children (00:29:49)

21. Taking control of, and managing your own condition (00:31:12)

22. Holistic therapies - good for everybody! (00:33:59)

23. People with autism can find it very hard to access healthcare (00:34:31)

24. A masterclass in personalised care. It’s not rocket science! (00:35:59)

25. Good for the patient – but also extremely cost-effective for the NHS! (00:44:37)

26. A plea to respect and value the expertise and dedication of family carers! (00:45:26)

27. Angela Cornwall moves to… Cornwall. A new chapter begins! (00:48:22)