#WeLDNs - Tuesday 24th May 2016 8:30pm (GMT Standard Time) Down's Syndrome Screening - The NIPT debate.

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As Learning disability nurses, we care for people across the lifespan and we do so with a strong emphasis on rights, choices and inclusion.  We work collaboratively with a range of professionals, carers, family and most importantly people who have learning disabilities to ensure that the care we provide has their needs at the heart.   The WeLDNurses network regularly demonstrates the diverse range of roles that people play in the life cycle of people with learning disabilities and the many areas that we work within. But what about before the person is born? 

WeLDNs has had the pleasure and honour of hearing the Goleniowska family speak on a number of occasions, including Mia and Natty herself (and fab they all are, too!). Hayley speaks passionately about the role of professionals in setting the scene for the life of a person with down’s syndrome, or sadly on more occasions than we would like, the decision to terminate.  The passion with which Hayley portrays this message inspired one of the WeLDNs team to study this topic for their dissertation. The literature was vast and the majority of studies showed the same results, when down syndrome is detected prenatally, only around 6% are recorded as live births.  This is an astonishingly low number of births, particularly considering that studies of both families of people with down syndrome and people who have down syndrome themselves state that they live a happy and fulfilling life, we see people with down syndrome who run their own businesses, who are successful models, actors, musicians, bloggers and campaigners, living highly successful and enjoyable lives, many independently and we have recently seen birthday celebrations for people in their 70’s!

We know that this is a highly emotive topic, and here at WeLDN’s we recognise the rights women and families have to make choices, after all this is central to our core method of practice.  However, choices go hand in hand with words such as ‘informed and balanced’.  Many of the research papers and published data reviewed suggest that women are not being given balanced information, and despite the NICE guidelines and recommendations for support to be given to families during the time a diagnosis is identified, women are still being told by telephone and many are offered no support at all, with only leaflets being provided with a range of co-morbidities documented.  However, research does show that the professionals that are involved in this process want to do more and recognise the need for additional support. Campaigns such as ‘Tell it Right, Start it Right’ are engaging with these professionals to increase the level of support and balance of informatio ngiven to new and expectant women to ensure they are able to make an informed choice,as without the right information, the choice cannot be appropriately informed.  There were a number of studies and guidelines (Bruce, 2013) that recommend a specially trained professional in this area should be involved in this process – does this sound like a professional we know?!?

All of these issues have existed for the past decade, whilst our screening process has been developed and changed along the way, however, a recent development in screening has opened up a further ethical issue, one which alongside the issues already raised, could have a profound impact on the decisions made by parents in the future.

Non-Invasive Prenatal Testing (NIPT) has been developed as away of testing for certain genetic conditions by checking the level of certain serum markers in a maternal blood test. This presents no risk to the unborn baby and is thought to be around 98% accurate with a very low false positive rate. It is worth noting that under the current guidelines, this is still not classified as a diagnostic test, with invasive testing still being required to provide a diagnosis.  However, invasive testing has a risk factor attached, there is a possibility of miscarriage and as the screening tests only provide a probability result, many parents are reluctant to put their child at risk on the strength of a possibility. 

There are growing concerns that the increased accuracy level of the NIPT will give people a sense that this test can replace the current invasive diagnostic tests and as such have a further impact on the number of people with down syndrome born, in 2012 689 people with down syndrome were born, many of these will have had no diagnosis and may not have had any screening, perhaps the probability was deemed too low to risk the invasive testing.  The issue that many are raising now is what if this new test becomes readily available?  What will this mean to the Down Syndrome community? What does the heralding of an innovation like NIPT say about our society and what is ‘normal’ enough to accede?  We have seen growing online campaigns such as ‘Don’t Screen Us Out’ attracting national coverage with a range of interviews recently including a radio interview with Sally Phillips, an actress known for her roles in Bridget Jones Diary and Miranda, who has a son, Ollie, with Down Syndrome.  Sally spoke beautifully of her son and his life and bravely about her experiences as a parent and of diagnosis, challenging the screening council to consider these issues before making any decisions. Click here to watch the BBC radio interview.

There are clear ethical issues surrounding this topic and we, as a group of people with a professional and personal interest, have an opportunity to input to some research being conducted by the University of East Anglia looking at the use of NIPT and the wider implications on society, particularly for people with learning disabilities.

So, this is our client group.  We have good links with other professionals and work well within teams, so what scope does the role of the learning disability nurse have in diagnosis and from birth?  If the people we care for are feeling vulnerable around this subject, it is our responsibility to advocate for them and support them to have their voice heard. How can we make sure choices are informed and support provided meets the needs of both the parent and the child? We know that early experiences shape a persons life and parent-child relationships effect development, so how can we ensure that we help to shape the way this is done to improve the quality of life that the people experience?  Language and terminology have a big role to play here #wordsmatter and we are at an important junction where we can help make a difference to the future of life experiences for people with down syndrome as well as people with a learning disability.

Join us on the 24/5 at 20:30 to share your thoughts and to help put together some views to submit towards the research.

Ross Wyatt @ross_6479

Sally Wilson @salsa442

Daniel Marsden @dmarsden49

Further Reading

Bruce, F. (2013) Parliamentary inquiry into abortion on the grounds of disability, London: House of Commons.

Gordon, O (2015) Living with Down’s syndrome: ‘He’s not a list of characteristics. He’s my son’ available ar

http://www.theguardian.com/society/2015/oct/17/living-with-downs-syndrome-hes-not-list-characteristics

Don’t Screen us Out http://dontscreenusout.org/

Downs SideUp. Campaigns for Change  http://www.downssideup.com/p/campaign-for-change.html

Down’s Syndrome Association.  About Down’s Syndrome: Tell it Right, Start it Right, http://www.downs-syndrome.org.uk/about/campaigns/tell-it-right-start-it-right/

Marsden, D. (2015). ‘Great news on Down’s syndrome screening?’ Nursing 4 the future, 6th June, http://nursing4thefuture.blogspot.co.uk/

National Down Syndrome Cytogenetic Register for England and Wales (NDSCR) (2014), 2012 Annual Report,London: NDSCR.

National Institute of Health and Care Excellence (NICE) (2008), Antenatal care for uncomplicatedpregnancies, London: NICE.

NHS Rapid Project (2014), NIPT for Down Syndrome.  www.rapid.nhs.uk/guides-to-nipd-nipt/nipt-for-down-syndrome/

http://www.dailymail.co.uk/debate/article-3580118/Would-world-better-place-without-people-like-daughter-DOMINIC-LAWSON-likens-new-test-s-Syndrome-State-sponsored-eugenics.html






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 Chat Summary

 

TheWeLDNurses chat results provided the basis for a thematic analysis where the below themes were arrived at.

Value for women/families

·        Although the test is not accurate enough to be referred to as  diagnostic, it was believed to offer a clearer indication of whether the foetus will have Down’s, Edward’s or Patau’s syndrome, without the risks associated with amniocentesis.

·        Participants acknowledged that NIPT afforded women and families swifter and more reliable information with which to make choices.

Economic

·        Question raised as to whether NIPT is a more cost effective process and easier to regulate compared to the identification processes currently in situ.

Service & practicedevelopment

·        For professionals to retain the distinction between the value for thelife and supporting women through the decision making process

·        In particular the commonalities and distinctions of having a child with Down’s, Edward’s or Patau’s syndrome and that it is not always useful to conflate the three conditions.

·        Challenges to obtain research funds currently to further develop ourunderstanding of Downs’ syndrome was identified

·        Questions around whether terminations are available after a positive NIPT test, and as such how many false positive tests could lead to terminations?

Affective

·        A question regarding feelings toward an increase to terminations elicited an overwhelming response of sadness and provided participants with an opportunity to reflect on their own values and beliefs as individuals and how these might align or contrast with those of a registered healthcare professional.

Wider ethical and societal questions

·        Participants questioning the value that society places on people with the aforementioned syndromes and their families. 

·        In a time of widening social integration with current generations having greater exposure and understanding of those with learning disabilities, the possibility of a UK population without the aforementioned groups of people based on their genetic make-up was a significant consideration.

Language & discourse

·        The use of language for framing and describing this area of work was picked up on as significant.

·        The use of words such as ‘screening’ and ‘risk’ and information providers observing foetuses as ‘abnormal’, along conversations starting with “I’m sorry…”, or “It’s bad news…’ could be observed as an indication of negativity, which can then be linked with termination.   

·        This discourse is also indicative of the pervasive medical model perspective through mainstream media. What is found to be absent from various reliable sources of data is how people with Down’s syndrome might function and contribute in UK society today.

·        Families continue to challenge this orthodoxy with publications, blogs and films (Goleniowska, 2014, Gordon, 2015) and ought to be supported to do so. 

·        Autonomy and women’s choice is very much dependant on the range of influencing factors, one parameter is the amount of time for decision making, while the information clarity, enabling this choice making is crucial.

Implications for Learning Disability Nurses/nursing

·        Whilst LDN’s might be able to contribute to the antenatal screening process, it was observed that LD services would be unlikely to be engaged/commissioned to do so. It was felt that LDN’s could offer an independent voice to the screening processes in a way that charities may find difficult.

·        It was of interest by all participants as to what reasonable adjustments Nuffield Bioethics had made to the consultation to enable people with learning disabilities and in particular the conditions to contribute.

Education and development of practice

·        Participants identified creative, engaging, and experiential education opportunities to support and enable staff to reflect on values and beliefs while identifying adjustments and improvements to care and support

·        It was observed that personal testimony was the most powerful tool

·        The promotion and implementation of the ‘Tell it Right’ education programme would also offer some assurance of local activity.

·        In acknowledging that education in pregnancy is ‘too late’ participants refer to a latent societal preconception about disability, which requires challenging

A response to the Nuffield Bioethics Consultation on the implementation of NIPT has been produced, by reviewing the WeLDNurse chat held on 24thMay 2016. A thematic analysis of the transcript has highlighted seven areas for further consideration and several recommendations for individual’s, healthcare professionals, local commissioners and national organisations. These highlighted the contribution that Learning Disability Nurses could make in this ethically thorny area of practice, as advocates, enablers, facilitators and practice developers.

This analysis is based primarily on the implementation of NIPT to test for Down’s,Edward’s and Patau’s syndromes, however it was acknowledged by participants in the chat that further discoveries in this technology will bring further significant ethical dilemmas that would be important to prepare for.

WeLDNurses recommend that this preparation must begin with ensuring the implementation of NIPT is careful and thoughtful while transformational research methodologies are employed to ensure evaluation is considered from all perspectives.

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A complete NIPT consultation report was generated and can be viewed/downloaded from here.





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 #WeLDNs transcript

 
@helen_laverty
24 May 2016 20:30
Slightly late sorry nail night! Waving though xxx #weldns
@WeLDnurses
24 May 2016 20:30
Evening all! Would all those attending and participating tonight like to say hello? #giveusawave #weldns
@AmyWixey
24 May 2016 20:31
RT @WeLDnurses: Evening all! Would all those attending and participating tonight like to say hello? #giveusawave #weldns
@ross_6479_RNLD
24 May 2016 20:31
@WeLDnurses evening all, Ross here #waves #WeLDNs
@ross_6479_RNLD
24 May 2016 20:31
RT @WeLDnurses: Evening all! Would all those attending and participating tonight like to say hello? #giveusawave #weldns
@WeLDnurses
24 May 2016 20:31
Reminders first off. Use the hashtag #weldns in all your tweets, otherwise you won't make the transcript!
@samabdulla
24 May 2016 20:31
@WeLDnurses evening all #weldns
@salsa442
24 May 2016 20:32
Hi all, Sal here #waves #weldns
@AmyWixey
24 May 2016 20:32
RT @WeLDnurses: Reminders first off. Use the hashtag #weldns in all your tweets, otherwise you won't make the transcript!
@WeLDnurses
24 May 2016 20:32
If you are linking to good practice or evidence - and please do - also use the #ebp in your #weldns tweets.
@Mermcm
24 May 2016 20:33
Don't have the brain power for tonight's @WeLDnurses chat (slight post-op fog still) but enjoy & be good :D #weLDNs
@ColetteLloyd
24 May 2016 20:33
Hi all, Colette here, impostor! As am mum and SLT in training, but very interested in the topic x #weldns
@AmyWixey
24 May 2016 20:33
RT @WeLDnurses: If you are linking to good practice or evidence - and please do - also use the #ebp in your #weldns tweets.
@SavingDowns1
24 May 2016 20:34
RT @dmarsden49: @Nuffbioethics @TommyShakes @WeMidwives are you able to join us for the next #weldns chat? https://t.co/zoWtXNzBup
@ross_6479_RNLD
24 May 2016 20:34
Hi #WeLDNs https://t.co/YRvRLKksGQ
@WeLDnurses
24 May 2016 20:34
Tonight's chat has been inspired by some of those family carers that have supported #ldnurses & is over 12 months in the making #weldns
@salsa442
24 May 2016 20:34
@Mermcm @WeLDnurses hope you're soon on the mend #WeLDNs
@DSRF_UK
24 May 2016 20:35
#WeLDNs hello all! I am Liz Corcoran from the #downsyndrome research foundation UK- thanks for doing a tweetchat on this
@samabdulla
24 May 2016 20:35
@ColetteLloyd no imposters, views of everyone always wanted #weldns
@WeLDnurses
24 May 2016 20:35
We must make you aware of @Nuffbioethics current consultation on this. #weldns have used some of their work https://t.co/wwPhW47Lfz
@salsa442
24 May 2016 20:35
@ColetteLloyd No imposters, everyone is welcome at #WeLDNs #togetherwearebetter
@AmyWixey
24 May 2016 20:35
RT @WeLDnurses: We must make you aware of @Nuffbioethics current consultation on this. #weldns have used some of their work https://t.co/ww…
@redincandescent
24 May 2016 20:35
Hi giving you a wave #weldns #nipt https://t.co/mdb7KMKHXz
@markdornan47
24 May 2016 20:35
@WeLDnurses good evening everyone! #weLDNs
@helen_laverty
24 May 2016 20:36
RT @DSRF_UK: #WeLDNs hello all! I am Liz Corcoran from the #downsyndrome research foundation UK- thanks for doing a tweetchat on this
@ross_6479_RNLD
24 May 2016 20:36
@ColetteLloyd good to have you here #WeLDNs :)
@WeLDnurses
24 May 2016 20:36
Tonight we are going to us a mixture of tweeted questions and twitter polls, with the #weldns results being submitted to the consultation
@ross_6479_RNLD
24 May 2016 20:36
RT @WeLDnurses: We must make you aware of @Nuffbioethics current consultation on this. #weldns have used some of their work https://t.co/ww…
@UoC_LD
24 May 2016 20:36
@WeLDnurses Hiya Sandy here! #weldns
@helen_laverty
24 May 2016 20:36
RT @redincandescent: Hi giving you a wave #weldns #nipt https://t.co/mdb7KMKHXz
@salsa442
24 May 2016 20:36
RT @WeLDnurses: We must make you aware of @Nuffbioethics current consultation on this. #weldns have used some of their work https://t.co/ww…
@AmyWixey
24 May 2016 20:36
@ColetteLloyd everyone is welcome ?? #WeLDNs
@UoC_LD
24 May 2016 20:36
RT @WeLDnurses: If you are linking to good practice or evidence - and please do - also use the #ebp in your #weldns tweets.
@ross_6479_RNLD
24 May 2016 20:36
Hi ?? #WeLDNs https://twitter.com/savingdowns1/status/735192604879519744
@ross_6479_RNLD
24 May 2016 20:37
RT @WeLDnurses: Tonight we are going to us a mixture of tweeted questions and twitter polls, with the #weldns results being submitted to th…
@AmyWixey
24 May 2016 20:37
RT @WeLDnurses: Tonight we are going to us a mixture of tweeted questions and twitter polls, with the #weldns results being submitted to th…
@salsa442
24 May 2016 20:37
RT @WeLDnurses: Tonight we are going to us a mixture of tweeted questions and twitter polls, with the #weldns results being submitted to th…
@DownsSideUp
24 May 2016 20:37
RT @samabdulla: @ColetteLloyd no imposters, views of everyone always wanted #weldns
@Llinda_P
24 May 2016 20:37
Hi, am lurking but will try and keep up #weldns
@DownsSideUp
24 May 2016 20:37
@UoC_LD @WeLDnurses Evening all #weldns
@S411Y100
24 May 2016 20:37
#WeLDNs #wave hello from me ??
@trumpetlill
24 May 2016 20:37
RT @WeLDnurses: Ten minutes until tonight's #weldns debate, if you've been before, ready yourself for some innovations! https://t.co/E6RPT9…
@costallsk
24 May 2016 20:38
RT @WeLDnurses: Reminders first off. Use the hashtag #weldns in all your tweets, otherwise you won't make the transcript!
@WeLDnurses
24 May 2016 20:38
So, first poll. What is your interest in this chat? #weldns
@WeLDnurses
24 May 2016 20:38
Q1 - NIPT will be offered to women at a high risk of having a child with Down's. What are the advantages of having this test? #weldns
@salsa442
24 May 2016 20:38
@Llinda_P We love a lurker at #WeLDNs - especially a noisy lurker ??
@HazelPowell11
24 May 2016 20:38
#Weldns Hi everyone :)
@AmyWixey
24 May 2016 20:39
RT @WeLDnurses: So, first poll. What is your interest in this chat? #weldns
@salsa442
24 May 2016 20:39
RT @WeLDnurses: So, first poll. What is your interest in this chat? #weldns
@DownsSideUp
24 May 2016 20:39
RT @WeLDnurses: We must make you aware of @Nuffbioethics current consultation on this. #weldns have used some of their work https://t.co/ww…
@ross_6479_RNLD
24 May 2016 20:39
#weldns https://twitter.com/costallsk/status/735193217046609920
@ross_6479_RNLD
24 May 2016 20:39
#weldns https://twitter.com/savingdowns1/status/735193033524682752
@DownsSideUp
24 May 2016 20:39
RT @WeLDnurses: So, first poll. What is your interest in this chat? #weldns
@KayeNicoll
24 May 2016 20:39
I'm a newbie to chat so will try to keep up!! #weldns
@costallsk
24 May 2016 20:40
@WeLDnurses I'm a RNLD who is also mum & carer to son with DS #weldns
@DownsSideUp
24 May 2016 20:40
@HazelPowell11 Hi Hazel #WeLDNS x
@dmarsden49
24 May 2016 20:40
Evening all, also trying to keep up! #weldns
@ColetteLloyd
24 May 2016 20:40
Q1 - still trying to work that out! Lots of money for the pharmaceutical companies, and possibly 5 typical babies saved? #weldns
@helen_laverty
24 May 2016 20:40
@WeLDnurses #WeLDNs for me it's about making sure everyone has all the information for a real positive choice
@DownsSideUp
24 May 2016 20:40
RT @costallsk: @WeLDnurses I'm a RNLD who is also mum & carer to son with DS #weldns
@costallsk
24 May 2016 20:41
@WeLDnurses Advantage is that it's non invasive so unlikely to cause miscarriage #weldns
@HazelPowell11
24 May 2016 20:41
RT @helen_laverty: @WeLDnurses #WeLDNs for me it's about making sure everyone has all the information for a real positive choice
@HazelPowell11
24 May 2016 20:41
RT @costallsk: @WeLDnurses Advantage is that it's non invasive so unlikely to cause miscarriage #weldns
@salsa442
24 May 2016 20:41
@WeLDnurses for me the advantages of #nipt is around timely referral to LDN for pre and post natal support #WeLDNs
@costallsk
24 May 2016 20:41
RT @WeLDnurses: We must make you aware of @Nuffbioethics current consultation on this. #weldns have used some of their work https://t.co/ww…
@WeLDnurses
24 May 2016 20:41
RT @helen_laverty: @WeLDnurses #WeLDNs for me it's about making sure everyone has all the information for a real positive choice
@HazelPowell11
24 May 2016 20:41
RT @salsa442: @WeLDnurses for me the advantages of #nipt is around timely referral to LDN for pre and post natal support #WeLDNs
@Facebruce
24 May 2016 20:41
#weldns #NIPT good to get as much detail as is possible about any baby....maybe?
@HazelPowell11
24 May 2016 20:42
@salsa442 @WeLDnurses Good point Sally #weldns
@WeLDnurses
24 May 2016 20:42
RT @costallsk: @WeLDnurses Advantage is that it's non invasive so unlikely to cause miscarriage #weldns
@salsa442
24 May 2016 20:42
@KayeNicoll Lovely to have you join us #WeLDNs
@samabdulla
24 May 2016 20:42
@WeLDnurses from a purely risk pov? less invasive, decrease risk of un-needed further invasive procedure #weldns
@redincandescent
24 May 2016 20:42
@WeLDnurses mother to beautiful daughter with ds hope for balanced information for parents partaking in screening #weldns
@DownsSideUp
24 May 2016 20:43
Time to prepare with support #NIPT #WeLDNS? https://twitter.com/salsa442/status/735194020608016384
@salsa442
24 May 2016 20:43
RT @helen_laverty: @WeLDnurses #WeLDNs for me it's about making sure everyone has all the information for a real positive choice
@ColetteLloyd
24 May 2016 20:43
Q1 - if it was 100% accurate would be great....but still need amnio to be sure, so still risk to baby if you want certainty #weldns
@samabdulla
24 May 2016 20:43
RT @DownsSideUp: Time to prepare with support #NIPT #WeLDNS? https://twitter.com/salsa442/status/735194020608016384
@salsa442
24 May 2016 20:43
RT @Facebruce: #weldns #NIPT good to get as much detail as is possible about any baby....maybe?
@dmarsden49
24 May 2016 20:43
@WeLDnurses To whom? The woman? The family? The foetus? The society? #weldns
@HazelPowell11
24 May 2016 20:43
@DownsSideUp #weldns the support is important and we could get better at this ?
@WeLDnurses
24 May 2016 20:44
RT @dmarsden49: @WeLDnurses To whom? The woman? The family? The foetus? The society? #weldns
@WeLDnurses
24 May 2016 20:44
Poll 2: To what extent have you been aware of the #NIPT proposals #WeLDNs
@helen_laverty
24 May 2016 20:44
@redincandescent @WeLDnurses #weldns that's what we need - get rid of the scare mongering- what's the fear?
@salsa442
24 May 2016 20:44
@S411Y100 @WeLDnurses Its not a usual pathway, but I believe it should be #earlyintervention #WeLDNs
@redincandescent
24 May 2016 20:44
RT @dmarsden49: @WeLDnurses To whom? The woman? The family? The foetus? The society? #weldns
@ross_6479_RNLD
24 May 2016 20:44
#WeLDNs https://twitter.com/savingdowns1/status/735194568111443968
@ross_6479_RNLD
24 May 2016 20:45
#WeLDNs https://twitter.com/s411y100/status/735194564726644737
@smclrk
24 May 2016 20:45
Hi I'm lurking & will try to contribute if can. Evening #weldns
@redincandescent
24 May 2016 20:45
RT @DownsSideUp: Time to prepare with support #NIPT #WeLDNS? https://twitter.com/salsa442/status/735194020608016384
@DownsSideUp
24 May 2016 20:45
@costallsk @WeLDnurses Parents need to be aware NIPT not a diagnostic test and would require invasive test as a follow up too #WeLDNS
@ross_6479_RNLD
24 May 2016 20:45
#Weldns https://twitter.com/dsrf_uk/status/735194457918836736
@DownsSideUp
24 May 2016 20:45
RT @helen_laverty: @WeLDnurses #WeLDNs for me it's about making sure everyone has all the information for a real positive choice
@ross_6479_RNLD
24 May 2016 20:46
#Weldns https://twitter.com/savingdowns1/status/735194790548152320
@ross_6479_RNLD
24 May 2016 20:46
RT @WeLDnurses: Poll 2: To what extent have you been aware of the #NIPT proposals #WeLDNs
@WeLDnurses
24 May 2016 20:46
Does this happen in your area? #weldns https://twitter.com/salsa442/status/735194020608016384
@ross_6479_RNLD
24 May 2016 20:46
#Weldns https://twitter.com/dsrf_uk/status/735194890699575296
@redincandescent
24 May 2016 20:46
@WeLDnurses value to mothers less stress than invasive procedure but concern about lack of consideration to results #weldns #nipt
@helen_laverty
24 May 2016 20:46
RT @costallsk: @WeLDnurses Advantage is that it's non invasive so unlikely to cause miscarriage #weldns
@ross_6479_RNLD
24 May 2016 20:46
RT @WeLDnurses: Does this happen in your area? #weldns https://twitter.com/salsa442/status/735194020608016384
@salsa442
24 May 2016 20:46
@HazelPowell11 @DownsSideUp I think we have a duty to get better at this Hazel #earlyintervention #WeLdNs
@HazelPowell11
24 May 2016 20:47
Me too #weldns https://twitter.com/salsa442/status/735195350579838976
@samabdulla
24 May 2016 20:47
@salsa442 @HazelPowell11 @DownsSideUp early education is the best #earlyintervention #weldns
@DownsSideUp
24 May 2016 20:47
Professional, balanced support at point of diagnosis is vital #NIPT #WeLDNS LDNs are best placed for this? https://twitter.com/HazelPowell11/status/735194615184121861
@ColetteLloyd
24 May 2016 20:47
#WeLDNs isn't usual pathway a) very expensive b) positive predictive value 90% in high risk much much lower in average risk @salsa442
@WeLDnurses
24 May 2016 20:48
Q2 What are your thoughts/feelings if #nipt led to an increase in terminations? #weldns
@ross_6479_RNLD
24 May 2016 20:48
@KayeNicoll @WeLDnurses great to have you here #weldns
@salsa442
24 May 2016 20:48
#WeLDNs https://twitter.com/trumpetlill/status/735195424428941314
@ross_6479_RNLD
24 May 2016 20:48
#weldns https://twitter.com/trumpetlill/status/735195424428941314
@ross_6479_RNLD
24 May 2016 20:48
RT @WeLDnurses: Q2 What are your thoughts/feelings if #nipt led to an increase in terminations? #weldns
@Facebruce
24 May 2016 20:48
@WeLDnurses #weldns I think its extremely unlikely that at this stage referral to an available/ appropriate RNLD or CTLD is available now?
@samabdulla
24 May 2016 20:48
@DownsSideUp interestingly a discussion with @FionaCMcQueen earlier today non-trad roles for LD/MHN as health Visitor were discussed #weldns
@DownsSideUp
24 May 2016 20:48
@dmarsden49 @WeLDnurses Very good point D #WeLDNS
@ColetteLloyd
24 May 2016 20:49
@DownsSideUp @HazelPowell11 I believe LDNS excellent for this support and info #WeLDNs
@DownsSideUp
24 May 2016 20:49
RT @HazelPowell11: Me too #weldns https://twitter.com/salsa442/status/735195350579838976
@samabdulla
24 May 2016 20:49
@Facebruce @WeLDnurses it wouldn't be standard practice in my board, but should be. #weldns
@helen_laverty
24 May 2016 20:49
@redincandescent @WeLDnurses it's also about fear factor language #loosethelabel #telltheteurh #realinformation #weldns #notmyth
@salsa442
24 May 2016 20:49
RT @WeLDnurses: Does this happen in your area? #weldns https://twitter.com/salsa442/status/735194020608016384
@i_stables
24 May 2016 20:49
#weldns evening all sorry I'm late
@helen_laverty
24 May 2016 20:49
RT @salsa442: @HazelPowell11 @DownsSideUp I think we have a duty to get better at this Hazel #earlyintervention #WeLdNs
@helen_laverty
24 May 2016 20:49
RT @HazelPowell11: Me too #weldns https://twitter.com/salsa442/status/735195350579838976
@meclke
24 May 2016 20:49
@WeLDnurses I'm a @WeCYPnurses working in Special School as Nurse for Children with Complex Health needs. #WeLDNS knowledge useful.
@WeLDnurses
24 May 2016 20:50
Please don't forget the #weldns hashtag. We will have to send the hashtag police round! https://t.co/gGcyMwIJaR
@ross_6479_RNLD
24 May 2016 20:50
@salsa442 @S411Y100 @WeLDnurses I agree, this would be a great way to support from an early stage, this is in recommendations #weldns
@salsa442
24 May 2016 20:50
RT @DownsSideUp: Professional, balanced support at point of diagnosis is vital #NIPT #WeLDNS LDNs are best placed for this? https://t.co/EV…
@salsa442
24 May 2016 20:50
RT @WeLDnurses: Q2 What are your thoughts/feelings if #nipt led to an increase in terminations? #weldns
@AmyWixey
24 May 2016 20:50
RT @WeLDnurses: Q2 What are your thoughts/feelings if #nipt led to an increase in terminations? #weldns
@samabdulla
24 May 2016 20:50
@helen_laverty @redincandescent @WeLDnurses the truth has to include everything. The positives and the potential risks though. #weldns
@DownsSideUp
24 May 2016 20:50
@ross_6479 is being the hashtag fairy. Please remember your hashtags folks #WeLDNS
@Facebruce
24 May 2016 20:50
#weldns Qs2 then we should ask, in general (after some time to analyse stats). Why???
@AmyWixey
24 May 2016 20:50
RT @WeLDnurses: Please don't forget the #weldns hashtag. We will have to send the hashtag police round! https://t.co/gGcyMwIJaR
@salsa442
24 May 2016 20:50
#WeLDNs https://twitter.com/trumpetlill/status/735195821357060096
@ColetteLloyd
24 May 2016 20:50
Q2 I think it would be sad, my life much richer for having my daughter. Also shrink her community #weldns
@DSRF_UK
24 May 2016 20:50
@WeLDnurses #WeLDNs v sad. The studies don't even consider them in the numbers. Only 'lives saved' by less miscarriages of 'normal' babies
@ross_6479_RNLD
24 May 2016 20:50
Great point #weldns https://twitter.com/savingdowns1/status/735196109216194560
@helen_laverty
24 May 2016 20:50
@WeLDnurses #weldns was that me?!
@AnneLovebug
24 May 2016 20:50
RT @WeLDnurses: It's #weldns chat night 8-30 BST chat on down's syndrome screening. Check the prechat at http://buff.ly/22lo27s https://t.…
@ross_6479_RNLD
24 May 2016 20:51
RT @WeLDnurses: Please don't forget the #weldns hashtag. We will have to send the hashtag police round! https://t.co/gGcyMwIJaR
@DownsSideUp
24 May 2016 20:51
#YourWordsCount Terminology matters #WeLDNS https://twitter.com/helen_laverty/status/735196078010699776
@costallsk
24 May 2016 20:51
@WeLDnurses Would reflect that not enough support and information is being provided. We had great support at our local hospital #weldns
@ross_6479_RNLD
24 May 2016 20:51
#weldns https://twitter.com/trumpetlill/status/735196333053726720
@smclrk
24 May 2016 20:51
RT @DownsSideUp: Professional, balanced support at point of diagnosis is vital #NIPT #WeLDNS LDNs are best placed for this? https://t.co/EV…
@DownsSideUp
24 May 2016 20:51
@HazelPowell11 #WeLDNS https://twitter.com/samabdulla/status/735195893574586368
@salsa442
24 May 2016 20:51
@Facebruce @WeLDnurses I agree, but it should be happening IMO early intervention and balanced information could be so supportive #WeLDNs
@helen_laverty
24 May 2016 20:52
@samabdulla @redincandescent @WeLDnurses I agree but if we only offer a one sided view we'd still be talking about the flat earth! #WeLDNs
@i_stables
24 May 2016 20:52
#weldns there is a balance here between supporting parents and the value of the life we are talking about
@helen_laverty
24 May 2016 20:52
RT @DownsSideUp: #YourWordsCount Terminology matters #WeLDNS https://twitter.com/helen_laverty/status/735196078010699776
@LisaFar34706367
24 May 2016 20:52
RT @DownsSideUp: #YourWordsCount Terminology matters #WeLDNS https://twitter.com/helen_laverty/status/735196078010699776
@helen_laverty
24 May 2016 20:52
RT @DownsSideUp: @ross_6479 is being the hashtag fairy. Please remember your hashtags folks #WeLDNS
@salsa442
24 May 2016 20:52
RT @WeLDnurses: Please don't forget the #weldns hashtag. We will have to send the hashtag police round! https://t.co/gGcyMwIJaR
@ross_6479_RNLD
24 May 2016 20:52
#weldns https://twitter.com/facebruce/status/735196770221883392
@helen_laverty
24 May 2016 20:53
RT @i_stables: #weldns there is a balance here between supporting parents and the value of the life we are talking about
@redincandescent
24 May 2016 20:53
@helen_laverty @WeLDnurses it was me... Off to tge naughty step #weldns https://t.co/jmeRcY9JCz
@WeLDnurses
24 May 2016 20:53
RT @ColetteLloyd: Q2 I think it would be sad, my life much richer for having my daughter. Also shrink her community #weldns
@DownsSideUp
24 May 2016 20:53
The joys and challenges of parenting a child with DS need to be discussed #NIPT #WeLDNS Not just co-morbidities https://twitter.com/samabdulla/status/735196281862262784
@redincandescent
24 May 2016 20:53
RT @DownsSideUp: #YourWordsCount Terminology matters #WeLDNS https://twitter.com/helen_laverty/status/735196078010699776
@helen_laverty
24 May 2016 20:53
RT @redincandescent: @helen_laverty @WeLDnurses it was me... Off to tge naughty step #weldns https://t.co/jmeRcY9JCz
@WeLDnurses
24 May 2016 20:53
@helen_laverty surprisingly not this time :) #weldns
@helen_laverty
24 May 2016 20:53
RT @DownsSideUp: The joys and challenges of parenting a child with DS need to be discussed #NIPT #WeLDNS Not just co-morbidities https://t.…
@costallsk
24 May 2016 20:53
RT @WeLDnurses: Please don't forget the #weldns hashtag. We will have to send the hashtag police round! https://t.co/gGcyMwIJaR
@DSRF_UK
24 May 2016 20:54
#WeLDNs due to underfunding into medical research for #downsyndrome there isn't biomedical interventions on offer early on
@salsa442
24 May 2016 20:54
@DownsSideUp @ross_6479 And a fabulous job he's doing too, me on the other hand... #hashtagpolice ?? #WeLDNs https://t.co/05MGCgs9cZ
@WeLDnurses
24 May 2016 20:54
RT @DownsSideUp: #YourWordsCount Terminology matters #WeLDNS https://twitter.com/helen_laverty/status/735196078010699776
@DownsSideUp
24 May 2016 20:54
@Facebruce @WeLDnurses It is slated to happen in one trust #WeLDNS #fingerscrossed
@salsa442
24 May 2016 20:54
RT @ColetteLloyd: Q2 I think it would be sad, my life much richer for having my daughter. Also shrink her community #weldns
@redincandescent
24 May 2016 20:54
RT @salsa442: @HazelPowell11 @DownsSideUp I think we have a duty to get better at this Hazel #earlyintervention #WeLdNs
@ross_6479_RNLD
24 May 2016 20:54
@WeLDnurses would be v sad, and reflect that appropriate support and balanced info may not be being given #weldns
@ColetteLloyd
24 May 2016 20:54
#WeLDNS lack of info, expectation to terminate by medics, 'responsible' thing to do, fear based on outdated perceptions of DS? @Facebruce
@salsa442
24 May 2016 20:54
@WeLDnurses The idea of this makes me very sad #WeLDNs
@ross_6479_RNLD
24 May 2016 20:54
#weldns https://t.co/gYzu5aS9kQ
@ChrisHardyRNLD
24 May 2016 20:54
@WeLDnurses that we would be living with the thoughts and beliefs of people from past history rather than the future #weldns
@AnneLovebug
24 May 2016 20:54
#weldns you are talking about a subject I'm very interested in, 3yr old on a mission so will have to catch up later. ?? Have a good one
@SavingDowns1
24 May 2016 20:54
RT @DSRF_UK: #WeLDNs due to underfunding into medical research for #downsyndrome there isn't biomedical interventions on offer early on
@helen_laverty
24 May 2016 20:54
@WeLDnurses #WeLDNs what are you suggesting! #capfits
@DSRF_UK
24 May 2016 20:55
#WeLDNs research supports time to process psychologically is beneficial, no doubt when given up to date information.
@WeLDnurses
24 May 2016 20:56
Interesting. How would @Nuffbioethics best elicit the thoughts and feelings of people with Down's syndrome? #weldns https://twitter.com/ross_6479/status/735196520379785217
@ross_6479_RNLD
24 May 2016 20:56
@AnneLovebug I know that feeling!, the transcript will be around too, good luck! #weldns
@LisaFar34706367
24 May 2016 20:56
Wish I had the conviction that I would have been counselled to keep had we known prenatally #weldns #WeLDNS
@ross_6479_RNLD
24 May 2016 20:57
#weldns https://twitter.com/facebruce/status/735197643752644608
@DownsSideUp
24 May 2016 20:57
@WeLDnurses It will. It makes me weep to think of what we will miss out on #WeLDNS what those with LD bring to our communities
@ross_6479_RNLD
24 May 2016 20:57
RT @WeLDnurses: Interesting. How would @Nuffbioethics best elicit the thoughts and feelings of people with Down's syndrome? #weldns https:…
@TimScottHR
24 May 2016 20:57
RT @DownsSideUp: The joys and challenges of parenting a child with DS need to be discussed #NIPT #WeLDNS Not just co-morbidities https://t.…
@salsa442
24 May 2016 20:57
@DownsSideUp @samabdulla @helen_laverty @redincandescent @WeLDnurses I absolutely agree,needs to be real and not 'medicalised' #WeLDNs
@ChrisHardyRNLD
24 May 2016 20:57
RT @DownsSideUp: @WeLDnurses It will. It makes me weep to think of what we will miss out on #WeLDNS what those with LD bring to our communi…
@i_stables
24 May 2016 20:58
RT @ColetteLloyd: Q2 I think it would be sad, my life much richer for having my daughter. Also shrink her community #weldns
@samabdulla
24 May 2016 20:58
@salsa442 @DownsSideUp @helen_laverty @redincandescent @WeLDnurses are services like Contact a Family used now? #weldns
@redincandescent
24 May 2016 20:58
@WeLDnurses i would feel sad that society hadn't embraced diversity but also that ds community have failed to encourage discussion #weldns
@ColetteLloyd
24 May 2016 20:58
#weldns possibly ARCs fault? Their Handbook to be given to all parents on diagnosis of Fetal anomaly -all about termination @Facebruce
@DownsSideUp
24 May 2016 20:58
@ChrisHardyRNLD @WeLDnurses Outdated notions of disability lead to fear and ignorance #WeLDNS
@salsa442
24 May 2016 20:58
RT @DSRF_UK: #WeLDNs research supports time to process psychologically is beneficial, no doubt when given up to date information.
@ross_6479_RNLD
24 May 2016 20:58
@salsa442 @DownsSideUp @samabdulla @helen_laverty @redincandescent @WeLDnurses totally, need to consider the person in this #weldns
@WeLDnurses
24 May 2016 20:58
Q3 What might be the disadvantages of having #nipt available in the UK? #weldns
@DSRF_UK
24 May 2016 20:58
@WeLDnurses @Nuffbioethics #WeLDNs REALLY hoping you guys can help? focus groups? help construct Qnaires? the @DSAInfo will not be timely
@ELIANATARDIO
24 May 2016 20:58
RT @DSRF_UK: #WeLDNs hello all! I am Liz Corcoran from the #downsyndrome research foundation UK- thanks for doing a tweetchat on this
@WeLDnurses
24 May 2016 20:58
RT @LisaFar34706367: Wish I had the conviction that I would have been counselled to keep had we known prenatally #weldns #WeLDNS
@ChrisHardyRNLD
24 May 2016 20:58
@DownsSideUp @WeLDnurses absolutely well said! #weldns
@AmyWixey
24 May 2016 20:58
RT @WeLDnurses: Q3 What might be the disadvantages of having #nipt available in the UK? #weldns
@ross_6479_RNLD
24 May 2016 20:59
RT @WeLDnurses: Q3 What might be the disadvantages of having #nipt available in the UK? #weldns
@Facebruce
24 May 2016 20:59
@ColetteLloyd #weldns Oh! Goodness that's not good
@i_stables
24 May 2016 20:59
RT @DownsSideUp: @WeLDnurses It will. It makes me weep to think of what we will miss out on #WeLDNS what those with LD bring to our communi…
@meclke
24 May 2016 20:59
RT @DownsSideUp: @ChrisHardyRNLD @WeLDnurses Outdated notions of disability lead to fear and ignorance #WeLDNS
@S411Y100
24 May 2016 20:59
@LisaFar34706367 #weLDNs very difficult as not sure LD professionals are in the right place to give an alternative view
@salsa442
24 May 2016 20:59
RT @WeLDnurses: Q3 What might be the disadvantages of having #nipt available in the UK? #weldns
@DownsSideUp
24 May 2016 20:59
RT @samabdulla: @salsa442 @DownsSideUp @helen_laverty @redincandescent @WeLDnurses are services like Contact a Family used now? #weldns
@DownsSideUp
24 May 2016 21:00
RT @WeLDnurses: Q3 What might be the disadvantages of having #nipt available in the UK? #weldns
@samabdulla
24 May 2016 21:00
@S411Y100 @LisaFar34706367 is this about giving an alternative view, or a balanced view? They are different things IMO #weldns
@SavingDowns1
24 May 2016 21:00
RT @LisaFar34706367: Wish I had the conviction that I would have been counselled to keep had we known prenatally #weldns #WeLDNS
@DSRF_UK
24 May 2016 21:00
@WeLDnurses #WeLDNs more #DisabilityDiscrimination less diversity in society and grieving parents who might regret their decisions
@samabdulla
24 May 2016 21:01
@DownsSideUp @salsa442 @helen_laverty @redincandescent @DSAInfo @DSScotland perhaps we need to look at how we can use these groups? #weldns
@salsa442
24 May 2016 21:01
@WeLDnurses That it increases ToPs & also continues to develop & extend to other conditions, & then where will it end?? #WeLDNs
@DownsSideUp
24 May 2016 21:01
RT @WeLDnurses: Interesting. How would @Nuffbioethics best elicit the thoughts and feelings of people with Down's syndrome? #weldns https:…
@ross_6479_RNLD
24 May 2016 21:01
@WeLDnurses worry that ppl will see this as diagnostic test, potentially increasing testing & the impact this will have on community #weldns
@DownsSideUp
24 May 2016 21:01
RT @DSRF_UK: #WeLDNs research supports time to process psychologically is beneficial, no doubt when given up to date information.
@leanne_rockers
24 May 2016 21:01
RT @DSRF_UK: #WeLDNs research supports time to process psychologically is beneficial, no doubt when given up to date information.
@redincandescent
24 May 2016 21:02
@WeLDnurses nipt is available privately and regulation is abysmal at least in nhs we could endeavour to ensure better practice #weldns
@ColetteLloyd
24 May 2016 21:02
Q3 - must have better tests as DS is so awful, lack of info around DS, non invasive test less thought to what if positive result #weldns
@DownsSideUp
24 May 2016 21:02
@AnneLovebug Thank goodness for the transcript #WeLDNS
@samabdulla
24 May 2016 21:02
@DownsSideUp @salsa442 @helen_laverty @redincandescent @DSAInfo @DSScotland no text book or lecture ever teaches as much as a person #weldns
@Facebruce
24 May 2016 21:02
@WeLDnurses #weldns forgive me if am wrong but the #NIPT in general sounds very advantageous. So disads are losing the differences 2 us all
@DSRF_UK
24 May 2016 21:02
#WeLDNs LD nurses are well placed to help people with #downsyndrome have a voice. The charities are seen as biased unfortunately @DSAInfo
@WeLDnurses
24 May 2016 21:02
Do you believe that #NIPT test will have an impact on future pop. of people with down syndrome #WeLDNs
@SavingDowns1
24 May 2016 21:03
@WeLDnurses Q2 if lives lost used as a measure, then increased terminations of DS babies is a negative for everyone #weLDns
@WeLDnurses
24 May 2016 21:03
@salsa442 That is one of the questions @Nuffbioethics have to advise on #weldns https://t.co/CuxyzBA0r1 #ebp
@ColetteLloyd
24 May 2016 21:03
@samabdulla @S411Y100 @LisaFar34706367 balanced view. See https://t.co/pw05lPPp3A for how is done in US #weldns
@DSRF_UK
24 May 2016 21:03
@ross_6479 @WeLDnurses #WeLDNs indeed people are proceeding to straight to TOP rather than confirming the results
@helen_laverty
24 May 2016 21:04
RT @ColetteLloyd: #weldns possibly ARCs fault? Their Handbook to be given to all parents on diagnosis of Fetal anomaly -all about terminati…
@SavingDowns1
24 May 2016 21:04
@WeLDnurses @Nuffbioethics @ross_6479 About what? #weLDns
@helen_laverty
24 May 2016 21:04
RT @DownsSideUp: @ChrisHardyRNLD @WeLDnurses Outdated notions of disability lead to fear and ignorance #WeLDNS
@TimScottHR
24 May 2016 21:04
RT @WeLDnurses: Do you believe that #NIPT test will have an impact on future pop. of people with down syndrome #WeLDNs
@samabdulla
24 May 2016 21:04
@WeLDnurses any answer to this is purely conjecture. A test on its own maybe, a test with support/education following maybe not #weldns
@SavingDowns1
24 May 2016 21:04
@WeLDnurses Q3 cost without health benefit may be an issue for NHS #weLDns
@helen_laverty
24 May 2016 21:04
@DownsSideUp @ChrisHardyRNLD @WeLDnurses same in relation to our career choice - disabled by association #WeLDNS
@DownsSideUp
24 May 2016 21:05
Person first. Made me think of you @SteveLaitner #WeLDNS https://twitter.com/samabdulla/status/735199288263905280
@poissonmerlot
24 May 2016 21:05
@ColetteLloyd @Facebruce #weldns ARC provide 2 booklets one for continues too
@DSRF_UK
24 May 2016 21:05
#WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@ChrisHardyRNLD
24 May 2016 21:06
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@DownsSideUp
24 May 2016 21:06
@helen_laverty @ChrisHardyRNLD @WeLDnurses The power of LD nurses of often overlooked. They play a vital role @Nuffbioethics #WeLDNS
@samabdulla
24 May 2016 21:06
@DownsSideUp @SteveLaitner oddly enough, I was thinking about you Hayley. Alongside a mum and son who spoke to us in my 1st year #weldns
@LisaFar34706367
24 May 2016 21:06
#WeLDNS #weldns glad my sonographers were rubbish #welcomedowns
@redincandescent
24 May 2016 21:06
@WeLDnurses if it is implemented in the current prenatal screening programme undoubtably yes. #weldns
@ColetteLloyd
24 May 2016 21:06
#weldns if woman with 1:150 chance told negative NIPT, and understood that was only 90% would she still choose amnio to be sure...?
@WeLDnurses
24 May 2016 21:06
@ColetteLloyd @samabdulla @S411Y100 @LisaFar34706367 Can you say more about this? #weldns
@ross_6479_RNLD
24 May 2016 21:06
Good point #WeLDNS https://twitter.com/junegreenway/status/735200226407895040
@S411Y100
24 May 2016 21:06
#weLDNs think current view indicates increased rate of TOP so a LD view would be alternative. Agree balance and realism is needed
@helen_laverty
24 May 2016 21:07
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@DownsSideUp
24 May 2016 21:07
@helen_laverty @samabdulla @salsa442 @redincandescent I too am thankful for all those I have worked alongside with #LD #WeLDNS
@salsa442
24 May 2016 21:07
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@helen_laverty
24 May 2016 21:07
@DSRF_UK not a student but count me in #weldns
@DownsSideUp
24 May 2016 21:07
@samabdulla @SteveLaitner There is nothing like seeing the white of the audiences eyes to make them remember you ;) #WeLDNS
@Bantha29
24 May 2016 21:07
RT @DownsSideUp: The joys and challenges of parenting a child with DS need to be discussed #NIPT #WeLDNS Not just co-morbidities https://t.…
@i_stables
24 May 2016 21:08
@ColetteLloyd @WeLDnurses interestingly there patent recently who's child had downs and she said that she saw downs as a culture #WeLDNS
@WeLDnurses
24 May 2016 21:08
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@DownsSideUp
24 May 2016 21:08
@helen_laverty @ChrisHardyRNLD @WeLDnurses Undervalued and misunderstood #WeLDNS Thank you all
@costallsk
24 May 2016 21:08
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@helen_laverty
24 May 2016 21:08
RT @DownsSideUp: @helen_laverty @ChrisHardyRNLD @WeLDnurses Undervalued and misunderstood #WeLDNS Thank you all
@ross_6479_RNLD
24 May 2016 21:08
@DSRF_UK sounds like an amazing opportunity #weldns
@IPDCarrie
24 May 2016 21:08
RT @SavingDowns1: @WeLDnurses Q3 cost without health benefit may be an issue for NHS #weLDns
@WeLDnurses
24 May 2016 21:08
RT @helen_laverty: @DSRF_UK not a student but count me in #weldns
@DownsSideUp
24 May 2016 21:09
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@IPDCarrie
24 May 2016 21:09
RT @DownsSideUp: Professional, balanced support at point of diagnosis is vital #NIPT #WeLDNS LDNs are best placed for this? https://t.co/EV…
@IPDCarrie
24 May 2016 21:09
RT @HazelPowell11: Me too #weldns https://twitter.com/salsa442/status/735195350579838976
@DSRF_UK
24 May 2016 21:09
@ross_6479 #WeLDNs I agree- know any keen students?
@LisaFar34706367
24 May 2016 21:09
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@WeLDnurses
24 May 2016 21:09
Q4 What information about #nipt & the conditions should be shared & by whom? #weldns
@IPDCarrie
24 May 2016 21:10
RT @costallsk: Have come so far since I was a student nurse in 2010 at Positive Choices! Aim high & succeed! #WeLDNs #WeNurses https://t.co…
@WeLDnurses
24 May 2016 21:10
Do you feel there is a place for the #NIPT test in the NHS screening program #WeLDNs
@IPDCarrie
24 May 2016 21:10
RT @ross_6479: I loved this chat and learned so much myself #thankyou #IND16 #fragilex #weldns https://twitter.com/fragilexuk/status/730699860236763138
@samabdulla
24 May 2016 21:10
@WeLDnurses what conditions? #weldns
@Facebruce
24 May 2016 21:10
#weldns Screening etc++big issue but isnt the real Qs how do we demonstrate DS is so vital to society & How DS is just normal? #NIPT
@ross_6479_RNLD
24 May 2016 21:10
RT @WeLDnurses: Q4 What information about #nipt & the conditions should be shared & by whom? #weldns
@salsa442
24 May 2016 21:10
RT @WeLDnurses: Q4 What information about #nipt & the conditions should be shared & by whom? #weldns
@DSRF_UK
24 May 2016 21:11
@DownsSideUp @helen_laverty @ChrisHardyRNLD @WeLDnurses #WeLDNs here here! You are valued professionals!
@redincandescent
24 May 2016 21:11
@DownsSideUp parents need realism about parenting not the ideal unattainable perfect child but the truth all children are perfect #weldns
@trumpetlill
24 May 2016 21:11
@ross_6479 @WeLDnurses Yes!!! You only have to look on pregnancy forums to see this #WeLDNs
@DownsSideUp
24 May 2016 21:11
I think @RCNSWComms is a supporter of lifelong support by #WeLDNS nurses @WeLDnurses #NIPT #diagnosis #downssyndrome
@WeLDnurses
24 May 2016 21:11
Apologies - Down's syndrome, Edward Syndrome & Patau's syndrome #weldns https://twitter.com/samabdulla/status/735201293136986112
@helen_laverty
24 May 2016 21:12
RT @DSRF_UK: @DownsSideUp @helen_laverty @ChrisHardyRNLD @WeLDnurses #WeLDNs here here! You are valued professionals!
@DownsSideUp
24 May 2016 21:12
Well said. Not sugar-coated ideals but acceptance of all our differences #WeLDNS https://twitter.com/redincandescent/status/735201546636402690
@helen_laverty
24 May 2016 21:12
RT @WeLDnurses: Apologies - Down's syndrome, Edward Syndrome & Patau's syndrome #weldns https://twitter.com/samabdulla/status/735201293136986112
@nancygedge
24 May 2016 21:12
RT @DownsSideUp: The joys and challenges of parenting a child with DS need to be discussed #NIPT #WeLDNS Not just co-morbidities https://t.…
@DownsSideUp
24 May 2016 21:12
RT @DSRF_UK: @DownsSideUp @helen_laverty @ChrisHardyRNLD @WeLDnurses #WeLDNs here here! You are valued professionals!
@ross_6479_RNLD
24 May 2016 21:12
RT @WeLDnurses: Apologies - Down's syndrome, Edward Syndrome & Patau's syndrome #weldns https://twitter.com/samabdulla/status/735201293136986112
@i_stables
24 May 2016 21:12
@samabdulla @DownsSideUp @SteveLaitner personal testimony can change attitudes and perceptions best learning our students get #WeLDNS
@DSRF_UK
24 May 2016 21:12
@WeLDnurses #WeLDNs currently the diagnosis is delivered in a haphazard and inconsistent way to parents.
@smclrk
24 May 2016 21:13
RT @DownsSideUp: @WeLDnurses It will. It makes me weep to think of what we will miss out on #WeLDNS what those with LD bring to our communi…
@redincandescent
24 May 2016 21:13
@poissonmerlot @ColetteLloyd @Facebruce yet you don't have peer counsellors with living children 1/2 the story #weldns
@helen_laverty
24 May 2016 21:13
@samabdulla @WeLDnurses where is the person in all of the labelling? #WeLDNS
@dmarsden49
24 May 2016 21:13
@Facebruce Does the #nipt innovation support this notion? #weldns
@SavingDowns1
24 May 2016 21:13
RT @DSRF_UK: @WeLDnurses #WeLDNs currently the diagnosis is delivered in a haphazard and inconsistent way to parents.
@S411Y100
24 May 2016 21:13
RT @DownsSideUp: Well said. Not sugar-coated ideals but acceptance of all our differences #WeLDNS https://t.co/AI92rvz2fv
@DSRF_UK
24 May 2016 21:13
#WeLDNs Nationally agreed resources that we can inform upon would be nice!
@nancygedge
24 May 2016 21:14
The problem with them coming from medics is its always worst case scenarios #weldns https://t.co/lkcU8hYITG
@samabdulla
24 May 2016 21:14
@helen_laverty @WeLDnurses giving something a name doesn't have to be a label and doesn't have to be a bad thing #weldns
@LynnAMurray
24 May 2016 21:14
RT @SavingDowns1: @WeLDnurses Q3 cost without health benefit may be an issue for NHS #weLDns
@OrangeJuiceSky
24 May 2016 21:14
RT @nancygedge: The problem with them coming from medics is its always worst case scenarios #weldns https://t.co/lkcU8hYITG
@DownsSideUp
24 May 2016 21:14
RT @nancygedge: The problem with them coming from medics is its always worst case scenarios #weldns https://t.co/lkcU8hYITG
@salsa442
24 May 2016 21:15
@WeLDnurses Hard in 140! Balanced info,challenges v gains,links to support, commissioners need to think re pre-natal refs to CLDTs #WeLDNs
@DSRF_UK
24 May 2016 21:15
#WeLDNs I've always thought a short video would be helpful for parents to watch
@ross_6479_RNLD
24 May 2016 21:15
@DSRF_UK @WeLDnurses some of the research documented diagnosis given over telephone leaving person with no support #weldns #ebp
@WeLDnurses
24 May 2016 21:15
RT @helen_laverty: @samabdulla @WeLDnurses where is the person in all of the labelling? #WeLDNS
@salsa442
24 May 2016 21:15
RT @DSRF_UK: @WeLDnurses #WeLDNs currently the diagnosis is delivered in a haphazard and inconsistent way to parents.
@DSRF_UK
24 May 2016 21:15
@nancygedge #WeLDNs totally agree, It's how we doctors are taught... lists of problems
@WeLDnurses
24 May 2016 21:15
RT @samabdulla: @helen_laverty @WeLDnurses giving something a name doesn't have to be a label and doesn't have to be a bad thing #weldns
@poissonmerlot
24 May 2016 21:16
@redincandescent @ColetteLloyd @Facebruce #weldns we support thru screening/diagnosis for all conditions so cannot do that - we signpost
@DownsSideUp
24 May 2016 21:16
For me this is the most important area. We need to rewrite the script, retell our narratives #Downsyndorme #WeLDNS https://twitter.com/Facebruce/status/735201337512755200
@WeLDnurses
24 May 2016 21:16
@DSRF_UK Do you know of any? #weldns
@samabdulla
24 May 2016 21:16
@WeLDnurses have we asked @WeMidwives what prep they get in supporting parents at point of diagnosis. #weldns
@salsa442
24 May 2016 21:16
RT @ross_6479: @DSRF_UK @WeLDnurses some of the research documented diagnosis given over telephone leaving person with no support #weldns #…
@HealthUKTD
24 May 2016 21:16
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@helen_laverty
24 May 2016 21:16
@samabdulla @WeLDnurses yes but if we miss the human element we turn it in to a list of clinical issues and maybes #WeLDNS
@ross_6479_RNLD
24 May 2016 21:17
@salsa442 @WeLDnurses good point, there are recoms for 'specialist' with knowledge of condition to be involved . #weldns #ebp
@i_stables
24 May 2016 21:17
#weldns people on here value people with an LD is it not about how we instil that value in others #weldns
@DownsSideUp
24 May 2016 21:17
@ross_6479 @DSRF_UK @WeLDnurses And on phone while in supermarket, notes shoved through doors, others at work. Terrible. #WeLDNS re #NIPT
@helen_laverty
24 May 2016 21:17
RT @nancygedge: The problem with them coming from medics is its always worst case scenarios #weldns https://twitter.com/samabdulla/status/735196281862262784
@S411Y100
24 May 2016 21:17
RT @DownsSideUp: For me this is the most important area. We need to rewrite the script, retell our narratives #Downsyndorme #WeLDNS https:/…
@helen_laverty
24 May 2016 21:17
RT @ross_6479: @salsa442 @WeLDnurses good point, there are recoms for 'specialist' with knowledge of condition to be involved . #weldns #ebp
@ChrisHardyRNLD
24 May 2016 21:18
RT @DSRF_UK: @DownsSideUp @helen_laverty @ChrisHardyRNLD @WeLDnurses #WeLDNs here here! You are valued professionals!
@DSRF_UK
24 May 2016 21:18
@WeLDnurses #WeLDNs not currently but my vision is of ppl with DS young in old, living life. facing challenges and enjoying themselves.
@ross_6479_RNLD
24 May 2016 21:18
@DSRF_UK @WeLDnurses it really is, this needs to improve to ensure info is balanced #weldns
@DownsSideUp
24 May 2016 21:18
@samabdulla @WeLDnurses @WeMidwives I know they are keen to be involved with perhaps a #WeMidwives chat. #WeLDNS Training is key
@dmarsden49
24 May 2016 21:18
@poissonmerlot @redincandescent @ColetteLloyd @Facebruce Is 'screening' the right word in this case? No services screen to keep in #weldns
@NHS_RobW
24 May 2016 21:18
RT @nancygedge: The problem with them coming from medics is its always worst case scenarios #weldns https://twitter.com/samabdulla/status/735196281862262784
@CharleeB3010
24 May 2016 21:18
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@NHS_RobW
24 May 2016 21:18
RT @DownsSideUp: @samabdulla @WeLDnurses @WeMidwives I know they are keen to be involved with perhaps a #WeMidwives chat. #WeLDNS Training…
@CalvinMoorley
24 May 2016 21:18
RT @DSRF_UK: #WeLDNs any LD students out there want to work with a supervisor to run a #focusgroup with adults with #downsyndrome #nipt ?
@redincandescent
24 May 2016 21:18
@poissonmerlot @ColetteLloyd @Facebruce I respect the work you do - there is a gap How many women jump the hurdle to be signposted? #weldns
@JuneGreenway
24 May 2016 21:19
@WeLDnurses how reliable is #nipt and what benefit?are we #weldns not about inclusion rather than potential exclusion? ??
@samabdulla
24 May 2016 21:19
@helen_laverty @WeLDnurses so switch it. Celebrate the positives & make the clinical the maybes but we can't erase them #weldns
@ross_6479_RNLD
24 May 2016 21:19
@DownsSideUp @DSRF_UK @WeLDnurses it's just not acceptable #weldns
@DSRF_UK
24 May 2016 21:19
@samabdulla @WeLDnurses @WeMidwives #WeLDNs hmm I think the media coverage is what the chair is going for- keeping TOP to full term avail.
@WeLDnurses
24 May 2016 21:20
Q5 What will the impact of #NIPT be for people with Down’s, Edwards, Patau's syndrome, their families & our society? #weldns
@NHS_RobW
24 May 2016 21:20
@DSRF_UK @WeLDnurses or doing what everyone does. My son doing GCSEs this week. Just like all his mates #weldns
@LisaFar34706367
24 May 2016 21:20
#weldns #WeLDNS is it too late to educate when pregnant? Should we start in schools? #welcomedowns
@DownsSideUp
24 May 2016 21:20
@samabdulla @WeLDnurses @WeMidwives Training for midwives, sonographers, ARC, consultants vital, poss via @DSA Tell it Right courses #WeLDNS
@ross_6479_RNLD
24 May 2016 21:20
RT @WeLDnurses: Q5 What will the impact of #NIPT be for people with Down’s, Edwards, Patau's syndrome, their families & our society? #weldns
@NHS_RobW
24 May 2016 21:20
RT @WeLDnurses: Q5 What will the impact of #NIPT be for people with Down’s, Edwards, Patau's syndrome, their families & our society? #weldns
@helen_laverty
24 May 2016 21:21
RT @LisaFar34706367: #weldns #WeLDNS is it too late to educate when pregnant? Should we start in schools? #welcomedowns
@helen_laverty
24 May 2016 21:21
RT @NHS_RobW: @DSRF_UK @WeLDnurses or doing what everyone does. My son doing GCSEs this week. Just like all his mates #weldns
@DSRF_UK
24 May 2016 21:21
@NHS_RobW @WeLDnurses #WeLDNs good luck to him :-)
@samabdulla
24 May 2016 21:21
@DownsSideUp @WeLDnurses @WeMidwives @DSA the problem with that is its opt in. it should be in mandatory learning. #weldns
@salsa442
24 May 2016 21:22
RT @samabdulla: @WeLDnurses have we asked @WeMidwives what prep they get in supporting parents at point of diagnosis. #weldns
@OrangeJuiceSky
24 May 2016 21:22
Celebrate diversity, provide good info, balance medical with actual real life - talk possibility not doom & gloom. #weLDNs
@salsa442
24 May 2016 21:22
RT @WeLDnurses: Q5 What will the impact of #NIPT be for people with Down’s, Edwards, Patau's syndrome, their families & our society? #weldns
@redincandescent
24 May 2016 21:22
@Facebruce true #weldns
@ross_6479_RNLD
24 May 2016 21:22
@trumpetlill @DSRF_UK @WeLDnurses I imagine it was, that just can't be helpful #weldns
@DSRF_UK
24 May 2016 21:22
@WeLDnurses #WeLDNs parents are NOW challenged (abet gently) "oh didn't you do the test?"...that will worsen.
@salsa442
24 May 2016 21:22
RT @LisaFar34706367: #weldns #WeLDNS is it too late to educate when pregnant? Should we start in schools? #welcomedowns
@DownsSideUp
24 May 2016 21:23
RT @NHS_RobW: @DSRF_UK @WeLDnurses or doing what everyone does. My son doing GCSEs this week. Just like all his mates #weldns
@KayeNicoll
24 May 2016 21:23
@i_stables @samabdulla @DownsSideUp @SteveLaitner Very true! Educating all nursing students in LD will help change attitudies in LD #weldns
@SavingDowns1
24 May 2016 21:23
@JuneGreenway @WeLDnurses NIPT reliability unknown in large population. No health benefit attached. Are we inclusive,therefore? #weLDns
@DownsSideUp
24 May 2016 21:23
RT @Facebruce: #weldns Screening etc++big issue but isnt the real Qs how do we demonstrate DS is so vital to society & How DS is just norma…
@OrangeJuiceSky
24 May 2016 21:23
Not all people with Down's syndrome live in "Holland". Some found Italy but most are livin it up in Vegas!! #WeLDNs
@DSRF_UK
24 May 2016 21:23
@WeLDnurses #WeLDNs we already struggle to fund #medicalresearch for ppl with #downsyndrome ---Some see screening as treatment for DS!!
@ross_6479_RNLD
24 May 2016 21:24
#weldns https://twitter.com/colettelloyd/status/735204510696677377
@poissonmerlot
24 May 2016 21:24
@redincandescent @ColetteLloyd @Facebruce #weldns yes we women/couples who end pregnancies. But We support ALL through pregnancy.
@redincandescent
24 May 2016 21:24
@LisaFar34706367 Yes an inclusive society where parents do not feel their child will be ostracized or disadvantaged by being born #weldns
@NHS_RobW
24 May 2016 21:24
.@OrangeJuiceSky - agree. Our lives have had more light and much less doom since G was born :) #weldns
@SavingDowns1
24 May 2016 21:24
RT @DSRF_UK: @WeLDnurses #WeLDNs we already struggle to fund #medicalresearch for ppl with #downsyndrome ---Some see screening as treatment…
@i_stables
24 May 2016 21:24
@KayeNicoll @samabdulla @DownsSideUp @SteveLaitner working with NES to embed LD content in all u/g programmes in scotland #weLDNs
@OrangeJuiceSky
24 May 2016 21:25
RT @NHS_RobW: .@OrangeJuiceSky - agree. Our lives have had more light and much less doom since G was born :) #weldns
@helen_laverty
24 May 2016 21:25
RT @OrangeJuiceSky: Not all people with Down's syndrome live in "Holland". Some found Italy but most are livin it up in Vegas!! #WeLDNs
@DSRF_UK
24 May 2016 21:25
@samabdulla @DownsSideUp @WeLDnurses @WeMidwives @dsa #WeLDNs agreed should be a core competency for doctors training
@DownsSideUp
24 May 2016 21:25
TY @PCConf @ScotLDAN @LDActionAware who change attitudes of nursing staff at the beginning of their careers #WeLDNS https://twitter.com/KayeNicoll/status/735204500374491137
@S411Y100
24 May 2016 21:25
RT @OrangeJuiceSky: Not all people with Down's syndrome live in "Holland". Some found Italy but most are livin it up in Vegas!! #WeLDNs
@ross_6479_RNLD
24 May 2016 21:25
Excellent point #weldns https://twitter.com/colettelloyd/status/735204899915501570
@OrangeJuiceSky
24 May 2016 21:25
@NHS_RobW Much much more #WeLDNs https://t.co/1ClLZdRcMj
@trumpetlill
24 May 2016 21:25
@ross_6479 @DSRF_UK @WeLDnurses it wasn't but this little beauty eventually changed all of that ?? #WeLDNs https://t.co/TFApCA2LBh
@WeLDnurses
24 May 2016 21:25
Q6 Do we think Learning Disability Nurses have a role in this area of work? #weldns
@helen_laverty
24 May 2016 21:26
RT @DownsSideUp: TY @PCConf @ScotLDAN @LDActionAware who change attitudes of nursing staff at the beginning of their careers #WeLDNS https:…
@NHS_RobW
24 May 2016 21:26
.@DSRF_UK @WeLDnurses - and essential research by @dseint needs adopting and implementing #weldns
@helen_laverty
24 May 2016 21:26
RT @trumpetlill: @ross_6479 @DSRF_UK @WeLDnurses it wasn't but this little beauty eventually changed all of that ?? #WeLDNs https://t.co/TFA…
@salsa442
24 May 2016 21:26
RT @WeLDnurses: Q6 Do we think Learning Disability Nurses have a role in this area of work? #weldns
@OrangeJuiceSky
24 May 2016 21:27
#WeLDNs Celebrate Down's syndrome https://t.co/dFu9pJN8xW
@salsa442
24 May 2016 21:27
@WeLDnurses YES we do #weldns
@ross_6479_RNLD
24 May 2016 21:27
@trumpetlill @DSRF_UK @WeLDnurses ah how gorgeous #beautifulbaby #weldns
@HazelPowell11
24 May 2016 21:27
RT @salsa442: @WeLDnurses YES we do #weldns
@DSRF_UK
24 May 2016 21:27
@trumpetlill @ross_6479 @WeLDnurses what a sweetheart! #WeLDNs
@ross_6479_RNLD
24 May 2016 21:27
RT @WeLDnurses: Q6 Do we think Learning Disability Nurses have a role in this area of work? #weldns
@babygarrett60
24 May 2016 21:27
??GET FREE 316 FOLLOWERS ??https://cards.twitter.com/cards/18ce54b1ot2/1rizd #weldns #GreenwichHour Need a Tuesday
@olaaba4luv
24 May 2016 21:27
??GET FREE 276 FOLLOWERS ??https://cards.twitter.com/cards/18ce54b1ot2/1rizd #weldns #BGT2016 #Blackwalltunnel
@redincandescent
24 May 2016 21:27
RT @DownsSideUp: TY @PCConf @ScotLDAN @LDActionAware who change attitudes of nursing staff at the beginning of their careers #WeLDNS https:…
@WeLDnurses
24 May 2016 21:27
Do learning disability nurses have a role in this? #WeLDNs
@S411Y100
24 May 2016 21:27
RT @OrangeJuiceSky: @NHS_RobW Much much more #WeLDNs https://t.co/1ClLZdRcMj
@samabdulla
24 May 2016 21:28
@WeLDnurses yes. Whether is frontline or supporting existing workforce. #weldns
@WeLDnurses
24 May 2016 21:28
Have you got an #ebp link? #weldns https://twitter.com/NHS_RobW/status/735205358931718144
@OrangeJuiceSky
24 May 2016 21:28
RT @NHS_RobW: @DSRF_UK @WeLDnurses or doing what everyone does. My son doing GCSEs this week. Just like all his mates #weldns
@helen_laverty
24 May 2016 21:28
RT @salsa442: @WeLDnurses YES we do #weldns
@OrangeJuiceSky
24 May 2016 21:28
RT @DownsSideUp: The joys and challenges of parenting a child with DS need to be discussed #NIPT #WeLDNS Not just co-morbidities https://t.…
@KayeNicoll
24 May 2016 21:28
@i_stables @samabdulla @DownsSideUp @SteveLaitner Trying to anyway!! #weldns
@LisaFar34706367
24 May 2016 21:28
@redincandescent next gen will know as our children are 'out there' beside them at school may not need counselling #weldns #WeLDNS
@salsa442
24 May 2016 21:28
RT @samabdulla: @WeLDnurses yes. Whether is frontline or supporting existing workforce. #weldns
@DSRF_UK
24 May 2016 21:28
@WeLDnurses #WeLDNs as mentioned HELP US to help ppl with #downsyndrome have a voice in this consultation and beyond.
@ross_6479_RNLD
24 May 2016 21:29
@WeLDnurses absolutely, yes. All the literature points to a specialist professional to support all during pre/post & early days #weldns
@ColetteLloyd
24 May 2016 21:29
Q6 yes you have a VIP role as you know DS better than most medics #weldns
@SagefemmeSB
24 May 2016 21:29
RT @OrangeJuiceSky: #WeLDNs Celebrate Down's syndrome https://t.co/dFu9pJN8xW
@WeLDnurses
24 May 2016 21:29
As we reach the end of tonight's #weldns chat, can I thank everyone for contributing and those special ones for organising & guiding.




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