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Patient Passport webinar - Shared screen with gallery view
Lynn Shields - Contact
15:27
Hi Everyone. thanks to all for arranging this event
Carole Scrafton
22:03
Good afternoon, looking forward to this session. Important topic. I think - Having the choice to have it at the front of your medical files is a great idea to begin with. But having something people can carry with them all time also a useful must. I think having the choice of options to suit needs might be welcomed.
julie
55:41
Really informative, thank you!!
vicki
56:15
that was really interesting thankyou
Liz Dougan
56:42
Great to actually "see" it all Keith, thanks. Very well explained.
Amy and Friends
56:48
thankyou, that was great!
Dr Amina Alani
58:32
That was really informative: thank you very much.
Carole Scrafton
58:39
Thank you very interesting
Una
01:01:18
Our CEN Experts by Experience group highlight the issue of having to repeat all the details of their child's past medical history with every health professional when they know it has been documented by all the previous health professionals so can the passport include a once and for all past history and should we change the way we teach undergraduates and trainees that they do not need to go into all that detail every time?
Natalie Frankish, Genetic Alliance UK
01:04:05
Thank you for sharing the findings of the Rare Disease UK Alert Cards report Danielle - if anyone would like to read more, it can be downloaded from here - https://www.raredisease.org.uk/wp-content/uploads/sites/7/2020/02/Alert-cards-report-online.pdf
Martina Rodie
01:07:42
Link from Dr Mercer’s talk:https://www.nhsinform.scot/care-support-and-rights/decisions-about-care/anticipatory-care-planning-acp-thinking-ahead
Una
01:12:04
👍
Una
01:20:38
Parents described how traumatic it is to have to revisit distressing details of the past history when diag osis or disability was identified in the past
Una
01:24:03
I kicked myself for not realising how painful this could be for parents, seemed so obvious when they said this but I have never heard it stated so clearly before
Martina Rodie
01:27:00
So important to remember that not everyone has a diagnosis
Una
01:31:56
good to have 'normal ' weight for reference when dehydration may affect this dramatically but for children this will need frequent updating
Una
01:33:43
this document could be incorporated into a personal passport that has the key facts for the person as a person leaving the healthcare facts in an identified section
julie
01:36:02
Really interesting, hard to achieve, but will be well worth it!!
Sally Majid
01:38:15
Jo, great talk, thank you. I love your passport, with my paeds nurse hat on I'd be thankful and welcome a parent handing this to me on admission. I'm currently developing a parent health care organiser which is very similar.
Una
01:38:42
PAMIS digital passport has the potential for the
Una
01:39:18
Great presentations thank you very much for this important collaborative session
julie
01:39:25
PAMIS really good.
Amy and Friends
01:39:58
thankyou, this was very interesting. I have another meeting to join im afraid x
Carole Scrafton
01:40:48
Great initiative Jo, thank you to everyone
Natalie Frankish, Genetic Alliance UK
01:41:05
thank you for a very informative event!
julie
01:41:06
Thank you so much - really interesting! Need to go to another meeting...
Liz Dougan
01:41:17
Thank you Keith, Dani and Jo...all great presentations
Liz Dougan
01:41:27
And thank you Martina!