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3NDWG Webinar - Our experiences of hospital care during a pandemic - Speaker view
Alison Johnstone
31:33
Morning everyone :)
Julie Thomas
32:03
Good morning everyone
Jennifer Bute
32:15
Morning to al!
Chris Maddocks
34:29
Good morning all
Nigel Hullah
35:39
Morning all hope you enjoy our webinar
danielle wilson
35:46
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.
Julie Thomas
36:45
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
Chris Maddocks
38:41
Thank you for sharing Ceri
Rachael Kelley
38:50
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
Rachael Kelley
40:45
Thank you Ceri
Siobhan Waring
40:55
Thank You Ceri
Alison Locke
40:58
Thank you Ceri
Julie Thomas
40:59
Would they remember their dementia training in the Covid situation.
Chris Maddocks
41:24
Good morning Claire, so nice to have you back
Glenys Petrie
41:25
Thanks for sharing your story Ceri
Keith Oliver
42:15
Thank you Ceri. A fab start to the webinar.
REBECCA DORRIAN
42:32
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.
Keith Oliver
43:15
Hi Glenys - I hope that Queensland hospitals are better than our experience in parts of the UK
Julie Thomas
43:30
Please can we have copies of the slides
Alison Johnstone
44:59
yes would be great to have Katie's email address so I can chase up some queries around her research findings
Glenys Petrie
46:49
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.
Keith Oliver
48:16
Its lovely to connect with you. I hope that you and John are keeping well
Glenys Petrie
48:50
Yes, we have been very lucky here in Qld.
Julie Thomas
48:54
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.
REBECCA DORRIAN
49:19
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 .
Lesley Butcher
49:30
Totally agree Katie. Very controlling care that strips the person of their humanity, choice, dignity, personhood. Absolutely frightening indeed!
Nigel Hullah
49:38
I've asked Katie to get in touch Ali
Jennifer Bute
50:28
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 !
Ceri Higgins
51:31
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.
claire lawson
52:26
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
Ceri Higgins
53:24
nigel isn't access to sanitation or being able to use a toilet etc a human right???
Nigel Hullah
53:44
Yes it is
Ceri Higgins
55:40
the use of antipsychotics for my dad with lbd was potentially more fatal for him than anything
Siobhan Waring
57:33
That was great Katie thank you - I would love the links to your research to share with colleaugues
Julie Thomas
58:28
Thank you Katie and Ceri for your talks - very interesting
Lesley Butcher
58:30
Fab, thanks Katie
REBECCA DORRIAN
59:02
Excellent Katie and Ceri. Thank you both.
James Erskine
59:10
Nogales on the Webern I contact get Ito the meeting keith
REBECCA DORRIAN
59:45
Totally agree Nigel
Ceri Higgins
59:52
its about knowledge and understanding that's a personal thing not a professional thing.
Lesley Butcher
01:00:54
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'
Duncan Jones
01:00:58
Dementia care in hospital has to be seen as a priority
Ceri Higgins
01:01:20
can we include people with lived experience in that katie...
REBECCA DORRIAN
01:01:26
Leadership, education , ongoing training and CARE.
Leila Costa Dobes Chillingirian
01:01:47
I work as a volunteer at Kingston Hospital in the dementia ward and they are doing a great job there.
Julie Thomas
01:06:10
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?
Nigel Hullah
01:08:12
No associate membership is available try www.3ndwg.org
Dementia Voice
01:08:29
Hi Julie anyone can become a member please go to www.3ndwg.org to register
Julie Thomas
01:09:10
I have registered but not had any reply to say that I was successful.
claire lawson
01:10:13
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
claire lawson
01:11:01
i am so sorry for your experiences chris
Dementia Voice
01:11:50
Recording will be available on the website in the next week.
Ceri Higgins
01:12:09
communication is so important....hello my name is...….
REBECCA DORRIAN
01:12:12
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.
Lesley Butcher
01:13:23
I am so sorry to hear about his horrific experience Chris. Thank you so much for sharing with us.
Jennifer Bute
01:13:27
so sorry Chris thank you
danielle wilson
01:13:31
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?
Amy O'Donnell
01:13:35
thank you so much for sharing
Amy O'Donnell
01:13:44
so sorry your experience was so poor
Siobhan Waring
01:13:51
Thank you for sharing Chris and so sorry for your experience
Dementia Voice
01:13:52
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
Alison Locke
01:13:59
Chris, thank you so much for sharing, so powerful and heartbreaking to hear
REBECCA DORRIAN
01:14:23
Listening to people not just with your ears but with your eyes. Talking TIME - so important .
Ceri Higgins
01:14:25
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...
Duncan Jones
01:14:49
You’re such a powerful advocate Chris. Your experience is heartbreaking.
Rachael Kelley
01:14:59
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.
Emma Sweeney
01:15:00
Thank you for sharing Chris and allowing us to learn from your experience
Julie Thomas
01:15:37
Thank you for your answer, I look forward to that. Thanks Chris for sharing your experience and I am so sorry for your treatment.
Ceri Higgins
01:16:24
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 …..
Ceri Higgins
01:16:53
apologies to do …..
James Erskine
01:17:15
Nigel I can’t get through I’m on the webinar I’m sorry Keith Day
Rachael Kelley
01:19:02
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.
Glenys Petrie
01:23:00
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.
Ceri Higgins
01:23:14
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
Jennifer Bute
01:23:30
Thank you Keith good to hear you
Ceri Higgins
01:23:48
thankyou keith..
Alison Locke
01:23:59
thank you Keith
REBECCA DORRIAN
01:24:52
Thanks to all of you for your contributions today. your experiences need to be heard so that there is learning and change
Glenys Petrie
01:24:54
Excellent point Chris and also the additional comments from Nigel.
Julie Thomas
01:25:24
This was great today, thanks a lot everyone.
Jennifer Bute
01:25:30
Nigel you have been a brilliant affirmative chairman thank you!
REBECCA DORRIAN
01:26:07
I agree and more
Ceri Higgins
01:26:56
im a qualified trainer and 30 yrs dementia experience, but ive learnt more from panel members than anything...as I did from my dad.
Jennifer Bute
01:27:44
Apart for my one bad exepeince dating 9 days it was a very good stay!
Susan Collins
01:27:58
Needless to say, dementia training for ALL staff, consultants to porters ….
Siobhan Waring
01:27:59
Thank you everyone, very good session very inspiring
Alison Locke
01:28:00
Thank you every one - an excellent webinar!
Duncan Jones
01:28:25
Thank you Nigel. An excellent webinar
Chris Maddocks
01:28:30
Thank you for all your comments and feedback and joining us today
Ceri Higgins
01:28:32
pleasure to have joined....