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What do young people want from their asthma care?

This article explores what young people want from their asthma care and highlights the importance of listening and adopting a personalized approach. It discusses the need to involve patients, families, and carers in decision-making, improve access to information, support self-management, and increase patient control over their care. The article emphasizes the significance of effective communication and understanding in providing quality asthma care.

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What do young people want from their asthma care?

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  1. What do young people want from their asthma care? • Chloe Binnington & Tom Holliday

  2. What do young people want from their asthma care? • PollEverywhere

  3. What do young people want from their healthcare? • What really matters? The only way to really find out is to listen Doing “for” vs doing “with”

  4. The Maze of Care…. Who’s the real expert here?

  5. The Maze of Care A fragmented & episodic experience? When work is split up, information falls between the gaps, we end up with no overall (integrated) view of the person or their context. (paraphrasing Richard Davis from Vanguard)

  6. The Maze of Care…. • Who has the overview?

  7. The real expert…. What matters?

  8. What do young people want from their healthcare? • What really matters? The only way to really find out is to listen Doing “for” vs doing “with” “The asthma is controlling them but we should be controlling their asthma” Who do we mean by “we” in this context?

  9. “People with long term conditions, who tend to be heavy users of the health service, are likely to spend less than 1% of their time in contact with health professionals. The rest of the time they, their carers and their families manage on their own. Personalised care will only happen when statutory services recognise that patients’ own life goals are what count; that services need to support families, carers and communities” The NHS 5 Year Forward View

  10. What life is really like…. CRISIS STABLE Asthma LIFE EVERYTHING ELSE (own life goals) How do we make this part just slightly bigger?

  11. Creating personalised health care Doing more “with” and less “for”… • Treat people as assets • – Recognise that patients, families and carers are “experts by experience” • “If you're constantly defining people by what they lack or need, it's not difficult for people to lose sense of what they have to give.” • - Edgar Cahn • 2. Improve information to which people have access • Education • Signposting • Trusting people! (power??)

  12. Creating personalised health care Doing more “with” and less “for”… • 3. Support people to manage their own health and make their own informed choices • Sharing of responsibility by patient and professional • Co-creating agendas / plans and outcomes • Self management programmes • 4. Increase control patients have over the design and delivery of care provided to them • Choice • Voice • Co-production

  13. Creating personalised health care (Actually) Listen All you have to do is listen… • Don’t work from a confirmation basis • Listen and enquire – be curious! • Pay attention to what people are telling you (harder to do than it sounds)

  14. If you listen, young people will tell you! https://www.youtube.com/watch?v=XfAz2bMOMYE

  15. Always make sure you have an Asthma Management Plan So you know how to manage your asthma Too much air pollution doesn’t help either Help your friends that have asthma by thinking about our environment Make sure you go to your doctors for your annual asthma review And remember we can all help by reducing air pollution

  16. https://www.youtube.com/watch?v=gDk04V6gbIA

  17. A series of three workshops listening to CYP around service provision and asthma care, February & March 2019

  18. Health My Way: Principles

  19. Health My Way How do young people want their care delivered? Blue sky thinking around service provision… anything goes! SETTING / LOGISTICS / STAFF / SERVICES

  20. Health My Way: Venue What should the venue be like? • Football pitches • Beanbag chairs • Open – lots of space, lots of windows • Trampoline park • Animals – fish • Music • Big and bright • Plants • TV that has a variety of shows • Better suited rooms

  21. Health My Way: Logistics What should the processes be like? • 5 minutes to travel • Equipment that works • Centres close to school • Quick travel from school • Books – book swap shelf • PlayStation – FIFA • Rather be somewhere else • Regular check-ups • No appointments during the day • Length of time for a diagnosis

  22. Health My Way: Staff What should the professionals be like? How should they treat you? • Less strict • Wellness • Inform YP about how they can manage their condition • Same member of staff • Don’t scare us by saying lots of medical terms • If staff aren’t demeaning

  23. Health My Way: Services How should services be provided? What else would you like? • Casual discussion • All in one place • A navigator? Someone who knows? • Interactive maps of hospital • Sports • Spa in the hospital • Robots • Online • Over the phone • Interactive • Skype

  24. Health My Way: Developing Themes

  25. Health My Way More accessible care, closer to home…

  26. Health My Way Continuity of care and staff…

  27. Health My Way Being talked to, and helped to understand…

  28. Health My Way Engaging makes a difference!

  29. In Summary What do young people want from their asthma care? What does anyone want from their care? To be spoken to and listened to Continuity Accessibility Respected as individuals But really, you’ll have to ask them! Remember who the real expert is…

  30. The Maze of Care…. • Who’s the real expert here?

  31. Thank You Questions? Comments? Reflections? Chloe Binnington, future pharmacist & Tom Holliday, Asthma Darzi Fellow – tom.holliday@nhs.net

  32. All the work we do with our partners moves us closer towards our goal to make London the healthiest global city. • www.healthylondon.org • england.healthylondon@nhs.net • @healthyLDN

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