Fabulous thank you Anne-Sophie

Really informative, thank you

Great talk - thank you

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?

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.

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!

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!

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

Advocacy for your relative / child with LD never stops - 28 years and counting - very important but demanding work.

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

Thank you

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?

Thank you so much Irene for sharing your work , experiences and thoughts - fantastic to hear

I think that often there is a perception that ‘difficult behaviour’ is part of the condition, rather than an expression of distress.

Which evokes a very different response from people

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.

I notice a lot of different language being used - what is Irenes advice / preference - learning disabilites / intellectual disability / neuro diversity- any consensus?

Thank you so much Irene

Thank you, excelnt presentation

Amazing Irene, so informative and empowering

Thank you

Thank you, really great session

Great talk - thank you Irene

Thank you Irene. A great session.

Brilliant presentation - fascinating discussion! Thank you both

Really interesting, thank you

Thank you irene really fantastic

Agree - really enjoyed the 'interview' format - thanks both :)

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?

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.

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

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!

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?

Great talks, Ranjana and Paul

Great work Ranjana and Paul. The Factographic project looks great

Great work, really interesting

Really interesting update on this project! Thanks, Ranjana and Paul!

Are you still looking for new parents to talk to?

Thanks for your answer Ranjana and Paul :)

I have a one year old so I will definitely get in touch.

Thank you for the talk.

Thanks everyone and for the comments :)

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!

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

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?

Really interesting Felicity

Thank you Felicity - really interesting and thought provoking.

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?

Thank you Heather -very intersting support your feedback on holistic assessment work of CCN'S and the impact on team work

thanks so much everyone - apologies as I have to go get my non-working computer sorted out - really enjoyed the event

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.

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.

Sorry got to go. Thanks everyone - really interesting.

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

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...

Thank you so much - so interesting. I need to pop to another meeting! Sorry!

Great talks about what's happening in practice - thank you

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

Thank you everyone , I this seminar has been so interesting. I am sorry I have to go to another meeting now.

Thank you for the interesting talks. I have to go to another meeting.

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! :)

Thank you, I agree from a student nurse perspective this has been really excellent and informative.

Really interesting and stimulating presentations. Thank you

Thanks so much for a great seminar. Fantastic presentations and speakers. V interesting and inspirational

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

A really useful set of presentations, thank you

Wonderful webinar, thank you!

Thank you , excellent seminar

Thanks Faith and everyone

Thank you

thank you everyone - fascinating talks