Hi Everyone. thanks to all for arranging this event

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.

Really informative, thank you!!

that was really interesting thankyou

Great to actually "see" it all Keith, thanks. Very well explained.

thankyou, that was great!

That was really informative: thank you very much.

Thank you very interesting

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?

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

Link from Dr Mercer’s talk:https://www.nhsinform.scot/care-support-and-rights/decisions-about-care/anticipatory-care-planning-acp-thinking-ahead

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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

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

So important to remember that not everyone has a diagnosis

good to have 'normal ' weight for reference when dehydration may affect this dramatically but for children this will need frequent updating

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

Really interesting, hard to achieve, but will be well worth it!!

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.

PAMIS digital passport has the potential for the

Great presentations thank you very much for this important collaborative session

PAMIS really good.

thankyou, this was very interesting. I have another meeting to join im afraid x

Great initiative Jo, thank you to everyone

thank you for a very informative event!

Thank you so much - really interesting! Need to go to another meeting...

Thank you Keith, Dani and Jo...all great presentations

And thank you Martina!