Zoom Logo

Maternal, Child and Family Health Cluster Seminar - School of Health Sciences - Shared screen with speaker view
Tara Kerr-Elliott
Fabulous thank you Anne-Sophie
Emma Moore
Really informative, thank you
Jill Maben
Great talk - thank you
Tara Kerr-Elliott
I work in children's palliative care and there are many parallels . Am also currently thinking a lot about the use of language and terminology - I think society in general lacks the language which adds to confusion and isolation for patients and families.
Has there been any studies with people who have learning disabilities and have to deal with their carers dying before them and how they deal with grief?
Heather Lane
As Tara has just said there are strong parallels with end of life care with children and young people. From my experience children are comfortable talking about dying and prefer honesty and transparency. It was the parents that found it more difficult using direct language around death. However some parents preferred that death was directly referred to out of respect and acknowledgement of the situation. Thank you Irene, your work is very interesting.
Jill Maben
Thanks Irene - such helpful observations - having just buried our cat this week with my son with learning disabilities and had him present as my mum - his grandmother -was dying the inclusion is SO important - he learns by seeing and if it is not concrete it is not real for him. He is very open about death and talks about it often - which I can see makes others uncomfortable!
Anna Nicolle
This is a really interesting subject from a cultural as well as the humanistic points of view. I am a student paediatric nurse originally from a culture where direct conversations about death are more acceptable and are in fact expected from healthcare professionals, so it's quite difficult for me to judge how to have these conversations here in the UK, especially when children are concerned. Thank you so much for this lecture, it is very interesting and extremely relevant!
Emma Moore
As a community nurse, I visit pts with LD and a palliative diagnosis, I find that GP's and consultants don't have those honest conversations with the patient or their support workers, which can make my role challenging at times
Jill Maben
Advocacy for your relative / child with LD never stops - 28 years and counting - very important but demanding work.
Paula Kelly
Irene thank you for your discussion -very intersting -do you think that there is a general sense amongst health care professionals and in general that distress or upset is the worse thing that can happen to a person with learning disability -that affects both their inclusion, access to information and access to care and treatment
G.Damla KAYA
Thank you
G.Damla KAYA
Thanks Irene, I have indeed heard from you, or rather from your blog, that people with learning disabilities are six times more likely to die from Covid-19.You explained the reasons for this, but what I wonder is how long people with learning disabilities need to be hospitalized due to Covid 19.Actually, I mean, did this group need more hospitalization after they became covid, compared to other groups.Do you know any data on this subject?Or why do they were not taken as a priority group in vaccination despite these statistics? I think people with mild learning disabilities are not a priority for vaccination.How could they statistically ignore people with mild learning disabilities, how was this decided, what is your opinion?
Tara Kerr-Elliott
Thank you so much Irene for sharing your work , experiences and thoughts - fantastic to hear
Liz Langley
I think that often there is a perception that ‘difficult behaviour’ is part of the condition, rather than an expression of distress.
Liz Langley
Which evokes a very different response from people
Karen Cook
Thank you Irene. I think using the words death, dying etc. can be challenging for so many people and that dying is distressing for everyone. so true that you can't remove that distress but you can talk openly and offer empathy and support.
Jill Maben
I notice a lot of different language being used - what is Irenes advice / preference - learning disabilites / intellectual disability / neuro diversity- any consensus?
Jennifer Mance
Thank you so much Irene
Liz Langley
Thank you, excelnt presentation
Emma Moore
Amazing Irene, so informative and empowering
Nicola Dallimore
Thank you
Dawn Brenchley
Thank you, really great session
Jo Armes
Great talk - thank you Irene
Freda Mold
Thank you Irene. A great session.
Brilliant presentation - fascinating discussion! Thank you both
Really interesting, thank you
Sophie - Adult Nursing
Thank you irene really fantastic
Jill Maben
Agree - really enjoyed the 'interview' format - thanks both :)
Joanne Bosanquet
Health and digital literacy is definitely something I feel should be included throughout the curricula for all health and care professionals, let alone at a post graduate stage when we are developing our advanced skills and knowledge to be autonomous practitioners. Another side issue here is why Health Visitors were redeployed in the first place? Are we looking at the damage this may have caused amongst this population?
Heather Lane
I think visual cues are so important and non verbal body language for community health care professionals to gauge the whole picture, which you would lose with digital/online appointments.
Paula Kelly
Echo's in the provision of video consutations for children with cancer as a replacement for some home visits. in addition as other have suggested being managed by professionals whose training has been focused on the use of the technology rather than communitcation with families in this medium
Anna Nicolle
Ranjana, Paul, thank you for sharing the results of your very interesting research. I wonder how you managed to recruit participants for your studies, particularly new fathers prepared to talk about their mental health? Thank you!
Serena Peddle
Thank you for sharing your work! How can we apply learnings about the effect of Covid-19 on new parenthood to life after Covid-19 and the space of perinatal mental health more broadly?
Helen Cowie
Great talks, Ranjana and Paul
Dawn Brenchley
Great work Ranjana and Paul. The Factographic project looks great
Nicola Dallimore
Great work, really interesting
Really interesting update on this project! Thanks, Ranjana and Paul!
joshua reding
Are you still looking for new parents to talk to?
Serena Peddle
Thanks for your answer Ranjana and Paul :)
joshua reding
I have a one year old so I will definitely get in touch.
joshua reding
Thank you for the talk.
Ranjana Das
Thanks everyone and for the comments :)
Joanne Bosanquet
Hi Felicity, is there an open door back to NHSE/I to feed back on your experiences over the last year? Was a risk assessment undertaken by NHSE/I prior to redeployment? A year's gap in your vital work with families and communities is bound to have a significant impact on health inequalities and social determinants. Thank you for everything you are doing. It has not gone un-noticed :-)
Apologies, but I need to leave for another meeting - this was really fascinating - thank you so much for organising this!
Dawn Brenchley
Thank you for highlighting this Felicity. The impact of the lockdown and stepping down of Health Visiting and School Nursing services has had a dramatic effect on caseloads with higher levels of safeguarding seen
Penny Franklin
I've encountered some Grandparents who struggle to either provide support bubbles for their children and grandchildren. Often these grandparents are carers for children of parents who are key workers. Is there any support for these grandparents?
Liz Langley
Really interesting Felicity
Cath Taylor
Thank you Felicity - really interesting and thought provoking.
Howard Wiley
Thank you for your informative and insightful presentations, The things we don't know? Who'd have imagined that no-one ever formally considered how children with learning disabilities thought or dealt with death?
Paula Kelly
Thank you Heather -very intersting support your feedback on holistic assessment work of CCN'S and the impact on team work
Paul Hodkinson
thanks so much everyone - apologies as I have to go get my non-working computer sorted out - really enjoyed the event
Anne Francis
The general paediatric ward has been quite a traumatic place to work throughout the last year. So much self harm and mental health of CYP.
Elizabeth Barley
really interesting Laurence. we so often pathologise normal suffering which can be very harmful - links back to what Irene was saying about people not being willing just to sit with people with LD as they display distress.
Sarah Roberts
Sorry got to go. Thanks everyone - really interesting.
Anne-Sophie Darlington
Some of our learning from children who have had their development disrupted through illness, e.g. cancer, should be around how long it takes for things to be back to ‘normal’ ish, and what the long-lasting effects are, and the knowledge that for a large group the outcomes are ok.
Thank you! - I have another call to join at 2pm but from a student nurse perspective this has been a really interesting and informative session
Ranjana Das
Thanks for having me and for all these excellent talks - i need to see a student at 2 now on Teams, so will need to leave...
Anne-Sophie Darlington
Thank you so much - so interesting. I need to pop to another meeting! Sorry!
Jo Armes
Great talks about what's happening in practice - thank you
Clive Tobutt
Two questions...Was a risk assessment undertaken by the NHS re redeployment HV? Q 2 Any support or grand parents of children whose parents ae key workers who work? Sorry have another meeting that I have to go to...Clive
Deanna Hodge
Thank you everyone , I this seminar has been so interesting. I am sorry I have to go to another meeting now.
Nicola Dallimore
Thank you for the interesting talks. I have to go to another meeting.
Nicole Mcleod
Thank you to all that have presented over the course of this session - very thought provoking. i have another call to join now. Thank you for your time! :)
Rachel Connolly
Thank you, I agree from a student nurse perspective this has been really excellent and informative.
Michelle Leeman
Really interesting and stimulating presentations. Thank you
Debbie Cooke
Thanks so much for a great seminar. Fantastic presentations and speakers. V interesting and inspirational
Paula Kelly
Thank you so much to all of the contributors -really intersting afternoon. Zoe and the other children's nurses may be intersted in some research strating in North Central London on children's services -re cofiguration
Liz Langley
A really useful set of presentations, thank you
Joanne Bosanquet
Wonderful webinar, thank you!
Dawn Brenchley
Thank you , excellent seminar
Amy Dopson
Thanks Faith and everyone
Lisa Mohebati
Thank you
Cath Taylor
thank you everyone - fascinating talks