3NDWG Webinar - Our experiences of hospital care during a pandemic - Speaker view
Morning everyone :)
Good morning everyone
Morning to al!
Good morning all
Morning all hope you enjoy our webinar
Good morning everyone, I manage the Care Research and Technology Centre as part of the Dementia Research Institute in London (at Imperial), very pleased to be in attendance, interested to hear from all the panelists.
I run an Activity Group for Alzheimer's but since March I have no contact with any of the members. The people with dementia need contact at all times
Thank you for sharing Ceri
Hi Ceri, I'm so sorry to hear about your dad and your experiences. Five weeks is such a long time to be apart. From your experience, I was wondering what you would recommend hospitals do differently when someone living with dementia is in hospital at present? Thanks, Rachael
Thank you Ceri
Thank You Ceri
Thank you Ceri
Would they remember their dementia training in the Covid situation.
Good morning Claire, so nice to have you back
Thanks for sharing your story Ceri
Thank you Ceri. A fab start to the webinar.
Im so sorry for your loss Ceri. Definitely agree with you about ongoing communication with families as you know what's best in terms of what works best when caring for your loved one.
Hi Glenys - I hope that Queensland hospitals are better than our experience in parts of the UK
Please can we have copies of the slides
yes would be great to have Katie's email address so I can chase up some queries around her research findings
Hi Keith. Fortunately neither John nor I have needed to use them this year. However, I was interested in joining the webinar because we were involved in a Uni Qld research project’ Guidelines for People with a cognitive condition who require hospitalisation during the COVID-19 pandemic. It deliberately included a wider group then only dementia.
Its lovely to connect with you. I hope that you and John are keeping well
Yes, we have been very lucky here in Qld.
My friend's father (with Dementia) was in hospital last year and she went to visit him. A doctor and nurse were at his bedside and he was very upset and shouting. They didn't know what to do with him!! She calmed him and was so surprised by their attitude.
when my grandmother was in hospital last year, we completed a " This is Me" - we understood it was a busy ward however reminded staff that reading this would make providing care easier for them and make my grandmothers experience a better one. We continued to guide the staff towards the document .
Totally agree Katie. Very controlling care that strips the person of their humanity, choice, dignity, personhood. Absolutely frightening indeed!
I've asked Katie to get in touch Ali
I liked the rule to explain again and again! I was i hospital last month and when I came round form the emergency major op I had no idea why I was there! The nursed not understand !
Lorraine davies - I used this is me, but theres little recognition of it as it stays in the middle of files. I rang everyday and guided them constantly. I normally during respite or care write my own plan, my dad was moved around wards as positive negative and positive so there was little acceptance of anything I could write as we never knew hed moved ward. the biggest conversation was around them telling another family member they wouldn't be doing cpr, due to his conditions. I asked if that was dementia and requested a meeting/ conversation immediately.
All of these things are so important at the moment- especially as people living with dementias carers and family members- who know them best are not physically there to help to explain how a person with dementia non verbally explains there needs
nigel isn't access to sanitation or being able to use a toilet etc a human right???
Yes it is
the use of antipsychotics for my dad with lbd was potentially more fatal for him than anything
That was great Katie thank you - I would love the links to your research to share with colleaugues
Thank you Katie and Ceri for your talks - very interesting
Fab, thanks Katie
Excellent Katie and Ceri. Thank you both.
Nogales on the Webern I contact get Ito the meeting keith
Totally agree Nigel
its about knowledge and understanding that's a personal thing not a professional thing.
And we need nurses and carers to understand that emotional care is a strength and is necessary and that affording someone dignity and respect is a human right- not just a 'nice added extra'
Dementia care in hospital has to be seen as a priority
can we include people with lived experience in that katie...
Leadership, education , ongoing training and CARE.
Leila Costa Dobes Chillingirian
I work as a volunteer at Kingston Hospital in the dementia ward and they are doing a great job there.
Nigel: I have asked to become a member of the 3NDWG working group but had no reply. Is it only for people living with dementia?
No associate membership is available try www.3ndwg.org
Hi Julie anyone can become a member please go to www.3ndwg.org to register
I have registered but not had any reply to say that I was successful.
I have to leave as I have another meeting- will we get sent out a recording of it? it has been so interesting and useful so far
i am so sorry for your experiences chris
Recording will be available on the website in the next week.
communication is so important....hello my name is...….
Chris I'm so sorry to hear about this experience - again, communication is so important . If you had have had reassurance and good communication your experience could have been such a different one.
I am so sorry to hear about his horrific experience Chris. Thank you so much for sharing with us.
so sorry Chris thank you
Many thanks Chris and Ceri for your experiences, there is so much to learn from you both. We seem to have totally forgotten the basics of care or even basic human kindness, communication or interaction. How do we ensure this is less likely to happen?
thank you so much for sharing
so sorry your experience was so poor
Thank you for sharing Chris and so sorry for your experience
Hi Julie, everyone who registers becomes either an associate member (people who don’t have dementia) or Full Member (people who do have dementia) you will have been added to the database and will receive updates about webinars and our monthly newsletter
Chris, thank you so much for sharing, so powerful and heartbreaking to hear
Listening to people not just with your ears but with your eyes. Talking TIME - so important .
thankyou chris, im going to be working as had as I can in my area and across wales to to ensure such concerns are heard....thankyou so much for sharing...
You’re such a powerful advocate Chris. Your experience is heartbreaking.
Thank you Chris, there are so many things that could be easily fixed. It makes me wonder whether we need to collate and share people's experiences (such as yours and Ceri's) to make sure hospitals can learn from them.
Thank you for sharing Chris and allowing us to learn from your experience
Thank you for your answer, I look forward to that. Thanks Chris for sharing your experience and I am so sorry for your treatment.
Rachael Kelley - I have offered to a presentation to my local healthboard, as I am part of their dementia steering group, no uptake yet. we need to learn together …..
apologies to do …..
Nigel I can’t get through I’m on the webinar I’m sorry Keith Day
Absolutely agree Ceri - I'm very sorry to hear your offer hasn't been taken up. It sounds like there is a lot that can be learnt, and some simple changes that could be implemented during Covid which would really make a difference. I am due to contact our local Hospital Trust's dementia lead - I will ask her what is happening at the moment in the way of training/thinking about providing good quality care for people living with dementia and support for families during covid.
Keith, good point about ALL staff having awareness about dementia. Too often people only consider the nursing staff etc, but ‘forget about’ catering, cleaning staff, Allied Health etc.
my dads this me on a previous visit was ignored. it said hes afraid of noise and will rbd will hit out if not getting medication timely . they place him under the television and at the side of the double door. he was so frightened he tried to tell the nurse he was frightened and pushed the staff away as they told him not to worry about the noise. this is unacceptable
Thank you Keith good to hear you
thank you Keith
Thanks to all of you for your contributions today. your experiences need to be heard so that there is learning and change
Excellent point Chris and also the additional comments from Nigel.
This was great today, thanks a lot everyone.
Nigel you have been a brilliant affirmative chairman thank you!
I agree and more
im a qualified trainer and 30 yrs dementia experience, but ive learnt more from panel members than anything...as I did from my dad.
Apart for my one bad exepeince dating 9 days it was a very good stay!
Needless to say, dementia training for ALL staff, consultants to porters ….
Thank you everyone, very good session very inspiring
Thank you every one - an excellent webinar!
Thank you Nigel. An excellent webinar
Thank you for all your comments and feedback and joining us today
pleasure to have joined....