#WeLDNs - Tuesday 22nd October 2019 8:30pm (GMT Standard Time) Breaking down barriers to accessing palliative care

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Hosted by WeLDnurses using #WeLDNs

This chat is guest hosted by @PaulaHopes1 @ElizabethFair74

This week WeLDNurses are joined by Elizabeth who is a learning disability nurse of 23 years post qualification, Elizabeth is a lead community nurse in south wales with an interest in death and dying and ensuring a person with a learning disability has a person centred and dignified death.  

Elizabeth has completed a literature review on the barriers to screening, support and palliation in cancer and possible solutions for people with learning disabilities and wants to explore the recommendations from the dissertation through hosting a twitter chat to ascertain others experience in this area to help formulate future research proposal.

During the chat, Elizabeth is looking forward to exploring these issues with the community and generating some discussion about people’s views and experiences, some of the thoughts she would like to explore are as follows

What is your experience of people with learning disabilities being prepared for death and dying?

Tuffrey-Wijne, et al (2016) recommended that there should be a continuous focus on addressing the quality of services for end of life care including collaboration and training across services including palliative care and learning disability services to obtain robust person-centred end of life care.  What experience do learning disability nurses have when using advanced care plans for people with learning disabilities. Did it improve partnership working? Did it improve the quality of end of life care? What about for people without capacity? What is your experience of people with advanced care plans which is done in their best interest?

What is the experience of learning disability nurses using Tuffrey-Wijne ‘Breaking Bad News Model’?

 

Elizabeth is keen to discuss the ethical issues associated with breaking bad news, does using the breaking bad news model help with ethical decision making?  Can the model be used for other ethical decisions? Eg when to introduce discussions regarding advance care plans?

 

Has any learning disability nurses used the tool ‘PALLI’ to decide if palliative care is required?  How effective was it in practice?

Below is some further reading if people would like to review before the chat, we look forward to being joined by Elizabeth and the community to discuss this sensitive and important topic together.

Further Reading:

References: 

 

Brownrigg, S. 2018 Breaking bad news to people with learning disabilities: A literature review. British Journal of Learning Disabilities

 

Dunkley, S and Sales, R. 2014 The challenges of providing palliative care for people with intellectual disabilities: A literature review; international Journal of Palliative Nursing, 2014, Vol 20 No 6, P279 – 284

 

McLauglin, D, Barr, O, McIlfatrick, S and McConkey, R 2014 Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: A mixed methods study; Palliative Medicine, Vol. 28(10) 1213-1221, SAGE

 

Tuffrey-Wijne I 2013 A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine, 27(1), 5-12

 

Tuffrey-Wijne I and Rose, T 2017 Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study, Journal of Intellectual Disability Research, 61(8), pp 727-736

 

Vrijmoeth, C, Groot, CM, Christians, MGM, Assendelft, WJJ, Festen, DAM, Vad der Rijt, CCD, Van Schrojenstein Lantman-de Valk, HMJ, Vissers, KCP and Echteld, MA, 2018 Feasibility and validity of a tool for identification of People with intellectual disabilities in need of palliative care (PALLI). Research in developmental disabilities, 72, pp 67-78.





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 Chat Summary

 


Post chat summary provided by @elizabethfair74

My very first host of a web chat proved to be very popular.  The topic of palliative care is very emotive.  I wanted to explore the recommendations from my literature review of barriers for people with learning disabilities with cancer accessing palliative care.  Discussion regarding the use of advance care plans to encourage partnership working for person centred end of life care planning was very interesting.  It highlighted that further research and exploration in this area is required.   A quote regarding the use of ‘PALLI’ was

“the PALLI is innovative and needs further testing to see how accurate it is in the prognosis of death - but perhaps what we need is help to anticipate that dying might be possible not necessarily probable - we have used the Surprise Question in a recent research study”  Great recommendations for further research in just one quote. 

What was highlighted was the lack of opportunity for people with learning disabilities to be introduced to the concept of dying.  Also, the issue of ‘DNAR’ being routinely put in place for people with learning disabilities.  These issues can be explored in a further web chat.  Tonight, I was very proud to say that I am a learning disability nurse and to enable so many of us (stats: Total tweets: 343; Total contributors: 29, Total reach: 1,384,293) to share our personal and professional views.






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 #WeLDNs transcript

 
@WeLDnurses
22 October 2019 20:30
Evening all :) Let’s start tonight by welcoming @ElizabethFair74 and @PaulaHopes1 who will be co-hosting with us, how about a round of hello’s, lurking or chatting let us know you are with us #StatsMatter #WeLDNs
@WeLDnurses
22 October 2019 20:30
We’ll be using 2 hashtags tonight #weldns in all tweets so everyone can follow the great input you share and #ebp for any evidence you share :)
@ross_6479_RNLD
22 October 2019 20:31
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Evening all, Ross here, #Waves from up north! #weldns
@StaceyReesRNLD
22 October 2019 20:31
@ElizabethFair74 @WeLDnurses @PaulaHopes1 Hello y’all ?? #WeLDNs
@chris_dlamini
22 October 2019 20:32
Hello yours truly, lurking tonite #weldns
@WeLDnurses
22 October 2019 20:32
Hi Paula #weldns https://twitter.com/paularich1977/status/1186726678405496832
@HazelPowell11
22 October 2019 20:32
#WeLDNs Good evening all! Will be more lurking tonight but looking forward to following tweets. https://twitter.com/WeLDnurses/status/1186726487195619328
@carlyannedavies
22 October 2019 20:33
@WeLDnurses @ElizabethFair74 @PaulaHopes1 @WeLDnurses #weldns
@WeLDnurses
22 October 2019 20:33
We welcome all contributions :) #weldns https://twitter.com/elizabethfair74/status/1186726762602024962
@paularich1977
22 October 2019 20:33
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Sorry over excited there ?? #weldns
@WeLDnurses
22 October 2019 20:33
Hi Victoria :) #weldns https://twitter.com/vickig1086/status/1186726986842103808
@LucyAnn_Spencer
22 October 2019 20:33
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Waving here from North Wales #WeLDNs
@Cathy_55555
22 October 2019 20:33
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Good evening. Happy to join this important chat. @WeLDnurses #weLDNs
@PaulaHopes1
22 October 2019 20:33
@paularich1977 @WeLDnurses @ElizabethFair74 Hi everyone! Great to see friends old & new joining the chat tonight #weldns
@WeLDnurses
22 October 2019 20:33
@chris_dlamini We love a lurker, feel free to be a noisy one ;) #weldns
@Shaun_LDNurse
22 October 2019 20:33
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Hello, Shaun here from my sofa in Birmingham [decaf] tea in hand. ?? ?? #WeLDNs #StatsMatter
@WeLDnurses
22 October 2019 20:34
@HazelPowell11 Good to have you here Hazel :) #weldns
@StephanieRossLN
22 October 2019 20:34
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Hi there all, #WeLDNs
@PaulaHopes1
22 October 2019 20:34
RT @Cathy_55555: @WeLDnurses @ElizabethFair74 @PaulaHopes1 Good evening. Happy to join this important chat. @WeLDnurses #weLDNs
@WeLDnurses
22 October 2019 20:34
@paularich1977 @ElizabethFair74 @PaulaHopes1 Lots to be excited about, must be driving you crazy ;) #weldns
@chris_dlamini
22 October 2019 20:34
@PaulaHopes1 @paularich1977 @WeLDnurses @ElizabethFair74 Hello friend #weldns
@WeLDnurses
22 October 2019 20:35
@LastDaysoflifeR @ElizabethFair74 @PaulaHopes1 Great to have you here #WeLDNs
@chris_dlamini
22 October 2019 20:35
@paularich1977 @WeLDnurses @ElizabethFair74 @PaulaHopes1 What did l miss? #weldns https://t.co/TGW4QaEHpd
@PaulaHopes1
22 October 2019 20:35
RT @WeLDnurses: @LastDaysoflifeR @ElizabethFair74 @PaulaHopes1 Great to have you here #WeLDNs
@LiamFreeman1991
22 October 2019 20:36
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Hey everyone, Liam from Smethwick. Third year of my course. #statmatters #weLDNs
@WeLDnurses
22 October 2019 20:36
So here we go with question 1, What is your experience as learning disability nurses of using advanced care planning to support people with learning disabilities who have cancer? #WeLDNs
@ChurcherClare
22 October 2019 20:36
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Hi Everyone, I'm Clare and I'm a lecturer in USW #WeLDNs
@WeLDnurses
22 October 2019 20:37
@PedroTomisin @ElizabethFair74 @PaulaHopes1 Hi :) #weldns
@WeLDnurses
22 October 2019 20:37
@SarahPr57058520 @LiamFreeman1991 Hi Sarah #weldns
@WelchySquelchy
22 October 2019 20:37
Hi am here lurking away @WeLDnurses #WeLDNs
@Victori13020597
22 October 2019 20:37
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Hello @PaulaHopes1 @ElizabethFair74 #WeLDNs ??
@kwelsh1
22 October 2019 20:37
@WeLDnurses @ElizabethFair74 @PaulaHopes1 #weldns Hello from Devon ??????
@PaulaHopes1
22 October 2019 20:37
RT @Victori13020597: @WeLDnurses @ElizabethFair74 @PaulaHopes1 Hello @PaulaHopes1 @ElizabethFair74 #WeLDNs ??
@chris_dlamini
22 October 2019 20:37
@WeLDnurses None, hence my lurkiness lurkushiousness lurkuring lurking #weldns
@WeLDnurses
22 October 2019 20:38
Remember to add #WeLDNs in all your tweets so we can all see what each of us share :)
@HazelPowell11
22 October 2019 20:38
RT @chris_dlamini: @WeLDnurses None, hence my lurkiness lurkushiousness lurkuring lurking #weldns
@paularich1977
22 October 2019 20:38
@WeLDnurses @ElizabethFair74 @PaulaHopes1 Something like that #weldns https://t.co/bxTdV0dUVR
@WeLDnurses
22 October 2019 20:38
@chris_dlamini That’s some creative lurking ;) all experience including limited experience is useful for us to chat through :) #weldns
@chris_dlamini
22 October 2019 20:39
@ChurcherClare @WeLDnurses @ElizabethFair74 @PaulaHopes1 Hello Clare #weldns
@PaulaHopes1
22 October 2019 20:39
@Victori13020597 @WeLDnurses @ElizabethFair74 Hi thx for joining, lovely to see the support from @SwanseabayNHS @USWCareSciences @TeesUniSOHSC & @MHLD_SBUHB #WeLDNs best community there is
@LiamFreeman1991
22 October 2019 20:39
@SarahPr57058520 @WeLDnurses Nice to see you again @SarahPr57058520 #weLDNs
@LucyAnn_Spencer
22 October 2019 20:39
@WeLDnurses I have some experience of supporting a person with learning disabilities who had cancer, however it was before I started my learning disability student nurse journey. #WeLDNs
@salsa442
22 October 2019 20:39
Hi all. Sorry I’m late... in my experience care planning happens as diagnosis and treatment progress, @macmillancancer have some excellent resources to support #WeLDNs https://twitter.com/weldnurses/status/1186727973606608896
@WeLDnurses
22 October 2019 20:39
@ElizabethFair74 What experience do people have? #WeLDNs
@PaulaHopes1
22 October 2019 20:39
RT @HazelPowell11: #WeLDNs Good evening all! Will be more lurking tonight but looking forward to following tweets. https://twitter.com/WeLDnurses/status/1186726487195619328
@PaulaHopes1
22 October 2019 20:40
RT @WeLDnurses: Remember to add #WeLDNs in all your tweets so we can all see what each of us share :)
@PaulaHopes1
22 October 2019 20:40
RT @WeLDnurses: @chris_dlamini We love a lurker, feel free to be a noisy one ;) #weldns
@Shaun_LDNurse
22 October 2019 20:40
@WeLDnurses It’s not something I have experienced as a #StudentNurse so far (having completed second). I have supported people with cancer in clinic and ward settings (but not someone with a learning disability. Is this a typically part of CLDN role? #WeLDNs
@StephanieRossLN
22 October 2019 20:40
@WeLDnurses Very little. I have spent more time talking with families and carers about what is important for a person. #WeLDNs
@PaulaHopes1
22 October 2019 20:40
@LydiaWilliams91 @Victori13020597 @WeLDnurses @ElizabethFair74 Hiya Lydia #weldns
@WeLDnurses
22 October 2019 20:40
@salsa442 @macmillancancer Hi Sally, good to have you with us, is there a link to these resources you could share with us? #weldns
@LastDaysoflifeR
22 October 2019 20:41
#WeLDNs I wonder if there are many who have that experience - given ACPs may still not be widely used- should involve the person with LD but people not told and cancer is not as common as in the wider population
@HazelPowell11
22 October 2019 20:41
RT @LastDaysoflifeR: #WeLDNs I wonder if there are many who have that experience - given ACPs may still not be widely used- should invol…
@PaulaHopes1
22 October 2019 20:41
RT @LastDaysoflifeR: #WeLDNs I wonder if there are many who have that experience - given ACPs may still not be widely used- should invol…
@LiamFreeman1991
22 October 2019 20:41
@PedroTomisin @WeLDnurses @ElizabethFair74 @PaulaHopes1 It's to see you on a chat @PedroTomisin #weLDns #statsmatter
@PaulaHopes1
22 October 2019 20:41
RT @WeLDnurses: @ElizabethFair74 What experience do people have? #WeLDNs
@HazelPowell11
22 October 2019 20:41
#WeLDNs https://twitter.com/SarahPr57058520/status/1186729334574403587
@kwelsh1
22 October 2019 20:42
@WeLDnurses Mixed! More often end up as EOL plans as opposed to Advanced Care Plans due to nature of late diagnosis / prognosis #weldns
@WeLDnurses
22 October 2019 20:42
Sounds like a vital part of the process Stephanie, one i know is really valued. Was there a theme in the responses you have had that you could share with us? #WeLDNs https://twitter.com/stephanierossln/status/1186729084489011208
@chris_dlamini
22 October 2019 20:42
@Shaun_LDNurse @WeLDnurses Shaun as an LD nurse, you might work with a patient who has cancer either in the community or inpatient. So your experience is transferrable. #weldns
@WeLDnurses
22 October 2019 20:42
RT @LastDaysoflifeR: #WeLDNs I wonder if there are many who have that experience - given ACPs may still not be widely used- should invol…
@PaulaHopes1
22 October 2019 20:42
@MParry442 @WeLDnurses @Victori13020597 @ElizabethFair74 @SwanseabayNHS @USWCareSciences @TeesUniSOHSC @MHLD_SBUHB Great to have you with us, you have so much to bring to the discussion #weldns
@salsa442
22 October 2019 20:43
@WeLDnurses @macmillancancer https://www.macmillan.org.uk/information-and-support/resources-and-publications/other-formats/easy-read.html Here’s one #WeLDNs
@Victori13020597
22 October 2019 20:43
@WeLDnurses Advanced care planning used previously and currently being used to support in place progression for individuals who have Down Syndrome and Dementia with Positive outcomes for all involved! #ep #WeLDNs
@WeLDnurses
22 October 2019 20:43
Great stuff Sarah, how well was it received, did they find them useful? #WeLDNs https://twitter.com/sarahpr57058520/status/1186729334574403587
@chris_dlamini
22 October 2019 20:43
@kwelsh1 @WeLDnurses What are ALP please Katy? #weldns
@salsa442
22 October 2019 20:43
@WeLDnurses @macmillancancer https://www.macmillan.org.uk/information-and-support/resources-and-publications/videos/coping-with-cancer/cancer-and-disabilities And here’s another! Really useful resources #WeLDNs
@PaulaHopes1
22 October 2019 20:44
@StephanieRossLN @WeLDnurses That’s a really important part of the role & not everyone gets that support at #EOL great to hear that you have been able to offer personalised support at such an important time #weldns
@HazelPowell11
22 October 2019 20:44
RT @salsa442: @WeLDnurses @macmillancancer https://www.macmillan.org.uk/information-and-support/resources-and-publications/videos/coping-with-cancer/cancer-and-disabilities And here’s another! Really useful resources #WeLDNs
@WeLDnurses
22 October 2019 20:44
Thanks so much Sally, check out this link for some great useful resources #WeLDNs #EBP https://twitter.com/salsa442/status/1186729687478951936
@StephanieRossLN
22 October 2019 20:44
@LastDaysoflifeR I think sometimes the thinking is there and the questions may be asked but it is not documented as a ACP or talked about as an ACP. #WeLDNs
@salsa442
22 October 2019 20:44
@kwelsh1 @WeLDnurses I’ve experienced this too #WeLDNs
@WeLDnurses
22 October 2019 20:44
RT @salsa442: @WeLDnurses @macmillancancer https://www.macmillan.org.uk/information-and-support/resources-and-publications/videos/coping-with-cancer/cancer-and-disabilities And here’s another! Really useful resources #WeLDNs
@PaulaHopes1
22 October 2019 20:44
RT @WeLDnurses: Thanks so much Sally, check out this link for some great useful resources #WeLDNs #EBP https://twitter.com/salsa442/status/1186729687478951936
@PaulaHopes1
22 October 2019 20:44
RT @salsa442: @WeLDnurses @macmillancancer https://www.macmillan.org.uk/information-and-support/resources-and-publications/videos/coping-with-cancer/cancer-and-disabilities And here’s another! Really useful resources #WeLDNs
@PaulaHopes1
22 October 2019 20:44
RT @chris_dlamini: @kwelsh1 @WeLDnurses What are ALP please Katy? #weldns
@ChurcherClare
22 October 2019 20:44
@WeLDnurses Although I've not written any with people with learning disabilities, I have seen them come into Velindre with them and they were extremely helpful in planning care and discussing options #WeLDNs
@PaulaHopes1
22 October 2019 20:44
RT @WeLDnurses: Great stuff Sarah, how well was it received, did they find them useful? #WeLDNs https://twitter.com/sarahpr57058520/status/1186729334574403587
@chris_dlamini
22 October 2019 20:45
Methinks there are too many acronyms and abbreviations already, and it's not even 15mins in ?????#weldns
@kwelsh1
22 October 2019 20:45
@chris_dlamini @WeLDnurses ? EOL - end of life. Not sure about ALP? #weldns
@PaulaHopes1
22 October 2019 20:45
RT @salsa442: @WeLDnurses @macmillancancer https://www.macmillan.org.uk/information-and-support/resources-and-publications/other-formats/easy-read.html Here’s one #WeLDNs
@MParry442
22 October 2019 20:45
@WeLDnurses #weldns Does late diagnosis hamper advance care plans in LD patients?
@Shaun_LDNurse
22 October 2019 20:46
@chris_dlamini @WeLDnurses Sure. I don’t dispute that. I’m just wondering who’s responsible for the plan (professionally speaking)?.. or am I thinking way off?..#WeLDNs
@WeLDnurses
22 October 2019 20:46
@Louise90999815 @PaulaHopes1 @Victori13020597 @ElizabethFair74 @SwanseabayNHS @USWCareSciences @TeesUniSOHSC @MHLD_SBUHB Congratulations ?? #WeLDNs
@WeLDnurses
22 October 2019 20:46
Great to hear :) #weldns https://twitter.com/sarahpr57058520/status/1186730142288285700
@WeLDnurses
22 October 2019 20:46
RT @MParry442: @WeLDnurses #weldns Does late diagnosis hamper advance care plans in LD patients?
@Mariejwills
22 October 2019 20:47
#EOL #WeLDNs being a RMN, limited experience of LD, but have in MH! Locally in HB had a lot of support from palliative care team, CNS’s supported us with the patient, ensuring that he had a #DignifiedDeath and remained with us on the unit with familiar staff and surroundings!
@ChurcherClare
22 October 2019 20:47
@LucyAnn_Spencer @WeLDnurses This experience is invaluable and you are able to transfer skills and you an build on these as a student nurse and then registered LD nurse #WeLDNs
@LastDaysoflifeR
22 October 2019 20:47
@Victori13020597 @WeLDnurses #WeLDNs really interesting to hear that it has been used with people with DS
@salsa442
22 October 2019 20:47
@MParry442 @WeLDnurses In my experience late diagnosis can really impair advanced care plans as there’s often more urgency to treat or palliate symptoms which can lead to reactive care plans and/or end of life care plans #WeLDNs
@PaulaHopes1
22 October 2019 20:47
@Shaun_LDNurse @WeLDnurses Your role as an #LDnurse will have huge cross overs with primary & secondary care for some people, being able to support a person with an LD to access the right healthcare is vital in reducing #HealthInequalities & promoting positive outcomes #WeLDNs
@carlyannedavies
22 October 2019 20:47
@WeLDnurses I don't have any experience with this but I think the way in which we share information is very important. It is important that we make reasonable adjustments so that the individual understands what is happening to them and what the treatment options are. #weldns @WeLDnurses
@chris_dlamini
22 October 2019 20:47
@kwelsh1 @WeLDnurses Advanced Care Plans and how do they differ from the atandard care plans? Excuse typo earlier #weldns
@WeLDnurses
22 October 2019 20:47
Where they’ve been used, has using advanced care plans improved the end of life experience for the person? Were they person centred? #WeLDNs
@WeLDnurses
22 October 2019 20:48
RT @chris_dlamini: @kwelsh1 @WeLDnurses Advanced Care Plans and how do they differ from the atandard care plans? Excuse typo earlier #weldns
@WeLDnurses
22 October 2019 20:48
RT @LastDaysoflifeR: @Victori13020597 @WeLDnurses #WeLDNs really interesting to hear that it has been used with people with DS
@WeLDnurses
22 October 2019 20:48
RT @Mariejwills: #EOL #WeLDNs being a RMN, limited experience of LD, but have in MH! Locally in HB had a lot of support from palliative car…
@PaulaHopes1
22 October 2019 20:48
@Louise90999815 @WeLDnurses @Victori13020597 @ElizabethFair74 @SwanseabayNHS @USWCareSciences @TeesUniSOHSC @MHLD_SBUHB Yay! #Weldns https://t.co/dSvhzHmHTO
@StephanieRossLN
22 October 2019 20:49
@kwelsh1 @WeLDnurses I think that's an important point. Opportunity to plan ahead is missed and then the support is offered at 'end of life'. We do want to be better equipped to be supportive earlier and recognise when the right time to start conversations is. #WeLDNs
@salsa442
22 October 2019 20:49
Absolutely - there is always opportunity to involve the person at every stage #WeLDNs https://twitter.com/elizabethfair74/status/1186731036568424449
@Shaun_LDNurse
22 October 2019 20:49
@ElizabethFair74 @WeLDnurses So, on the assumption that it falls within the #RNLDs remit and on form, it’s largely around co-ordination of the plan?.. #WeLDNs
@PaulaHopes1
22 October 2019 20:49
RT @chris_dlamini: @kwelsh1 @WeLDnurses Advanced Care Plans and how do they differ from the atandard care plans? Excuse typo earlier #weldns
@LiamFreeman1991
22 October 2019 20:49
@WeLDnurses I would say, I have not had any experience but I am hoping on my community placements will let me gain knowledge of best policies in supporting people with learning disability with person centred plan #weLDns
@WeLDnurses
22 October 2019 20:49
RT @salsa442: Absolutely - there is always opportunity to involve the person at every stage #WeLDNs https://twitter.com/elizabethfair74/status/1186731036568424449
@LucyAnn_Spencer
22 October 2019 20:50
@WeLDnurses @ElizabethFair74 The lady I was in contact with did not have and end of life plan. It was not something I agreed with and it was something that I raised at the time. Its something which still upsets me to this day. #WeLDNs
@LastDaysoflifeR
22 October 2019 20:50
@salsa442 @MParry442 @WeLDnurses #WeLDNs not just late diagnosis of cancer but probably late recognition that someone might be dying with any illness
@WeLDnurses
22 October 2019 20:50
RT @LastDaysoflifeR: @salsa442 @MParry442 @WeLDnurses #WeLDNs not just late diagnosis of cancer but probably late recognition that someone…
@HazelPowell11
22 October 2019 20:51
RT @LastDaysoflifeR: @salsa442 @MParry442 @WeLDnurses #WeLDNs not just late diagnosis of cancer but probably late recognition that someone…
@WeLDnurses
22 October 2019 20:51
#WeLDNs https://twitter.com/mparry442/status/1186731593785839616
@ChurcherClare
22 October 2019 20:51
@Mariejwills @WeLDnurses This is lovely to hear #WeLDNs
@StaceyReesRNLD
22 October 2019 20:51
RT @MParry442: @WeLDnurses #weldns Does late diagnosis hamper advance care plans in LD patients?
@Mariejwills
22 October 2019 20:51
#EOL #WeLDNs Q1 again I’m not so sure that in the inpatient settings they are seen as ACP’s? This term is not common practice or routinely used by the team! This doesn’t necessarily mean that these discussions are not had by the team and the patient, as i believe they are!
@salsa442
22 October 2019 20:51
My experience with advanced care plans is that they are always person centred and empower the person during their treatment as well as those delivering care and treatment, and also support a dignified death #WeLDNs https://twitter.com/weldnurses/status/1186730891621609472
@ermate
22 October 2019 20:51
@WeLDnurses community learning disability nursing in my experience has been absolutely gold dust in terms of ensuring rights,understanding treatment&assisting with both reasonable adjustments&feelings #WeLDNs Have also helped me understand what’s happening & what I need to do in my own role
@PaulaHopes1
22 October 2019 20:51
@LucyAnn_Spencer @WeLDnurses @ElizabethFair74 I think that we do often see staff who feel that the people we have cared for have not had a good death and that can be really upsetting, reflecting, debriefing & looking for ways to share the learning from these experiences is really important #weldns
@Cathy_55555
22 October 2019 20:51
@salsa442 @MParry442 @WeLDnurses I totally agree. I witnessed exactly this 2 years ago. Awful experience. #edp #weldns @WeLDnurses
@kwelsh1
22 October 2019 20:51
@chris_dlamini @WeLDnurses Advanced care plans consider not just views about future care & treatment but also wider issues including what music someone may like, who they want with them, where they want to be, likes / dislikes, spiritual needs. #weldns #morethanafuneralplan
@PaulaHopes1
22 October 2019 20:52
RT @Cathy_55555: @salsa442 @MParry442 @WeLDnurses I totally agree. I witnessed exactly this 2 years ago. Awful experience. #edp #weldns @We…
@StaceyReesRNLD
22 October 2019 20:52
#weLDNs https://twitter.com/elizabethfair74/status/1186731936334733315
@PaulaHopes1
22 October 2019 20:52
RT @Mariejwills: #EOL #WeLDNs Q1 again I’m not so sure that in the inpatient settings they are seen as ACP’s? This term is not common pract…
@MParry442
22 October 2019 20:52
@LastDaysoflifeR @salsa442 @WeLDnurses Sorry #weldns
@PaulaHopes1
22 October 2019 20:52
RT @Mariejwills: #EOL #WeLDNs being a RMN, limited experience of LD, but have in MH! Locally in HB had a lot of support from palliative car…
@Shaun_LDNurse
22 October 2019 20:52
@PaulaHopes1 @WeLDnurses I understand this. My point being, which I thinks being referred to is around the coordination of the plan for the person being supported? #WeLDNs *NB: I’ve experienced care giving within general ward based setting, which is a bit removed from wider logistics.
@WeLDnurses
22 October 2019 20:53
@Mariejwills How are these discussions documented and people’s hopes/preferences and decisions documented on inpatient settings? It’s great for us all to understand what is happening in all areas so we can work across settings :) #WeLDNs
@salsa442
22 October 2019 20:53
@Cathy_55555 @MParry442 @WeLDnurses Late diagnosis and urgent treatment has in my experience always required significant additional work to ensure it is delivered in a person centred way #WeLDNs
@chris_dlamini
22 October 2019 20:53
@ElizabethFair74 @StaceyReesRNLD @kwelsh1 @WeLDnurses @ABUHB_ACP Thank you #weldns
@PaulaHopes1
22 October 2019 20:53
RT @WeLDnurses: #WeLDNs https://twitter.com/mparry442/status/1186731593785839616
@PaulaHopes1
22 October 2019 20:53
RT @LastDaysoflifeR: @salsa442 @MParry442 @WeLDnurses #WeLDNs not just late diagnosis of cancer but probably late recognition that someone…
@salsa442
22 October 2019 20:54
@MParry442 @LastDaysoflifeR @WeLDnurses Can be a mixture of both #WeLDNs
@PedroTomisin
22 October 2019 20:54
RT @LastDaysoflifeR: @salsa442 @MParry442 @WeLDnurses #WeLDNs not just late diagnosis of cancer but probably late recognition that someone…
@WeLDnurses
22 October 2019 20:54
RT @StaceyReesRNLD: #weLDNs https://twitter.com/elizabethfair74/status/1186731936334733315
@StaceyReesRNLD
22 October 2019 20:54
RT @LastDaysoflifeR: @salsa442 @MParry442 @WeLDnurses #WeLDNs not just late diagnosis of cancer but probably late recognition that someone…
@LucyAnn_Spencer
22 October 2019 20:54
@PaulaHopes1 @WeLDnurses @ElizabethFair74 Yes it’s definitely important to learn from. She was supported by a brilliant staff team and I have no doubt that she felt loved in the weeks and days leading up to her death. There were issues though which I have definitely learnt from. #WeLDNs
@WeLDnurses
22 October 2019 20:55
@MParry442 @LastDaysoflifeR @salsa442 Don’t worry, we’re happy to share your great thoughts :) #Weldns
@PaulaHopes1
22 October 2019 20:55
@LiamFreeman1991 @WeLDnurses & asking the question is important Liam, for some areas ACP is still fairly new, we know that people with learning disabilities are living longer with increasingly complex conditions & the #CTLD can be integral to ensuring they get the best possible support in preparing #Weldns
@HazelPowell11
22 October 2019 20:55
#WeLDNs https://twitter.com/BowandMerlin/status/1186732797446242306
@PedroTomisin
22 October 2019 20:55
RT @salsa442: Absolutely - there is always opportunity to involve the person at every stage #WeLDNs https://twitter.com/elizabethfair74/status/1186731036568424449
@PedroTomisin
22 October 2019 20:56
RT @HazelPowell11: #WeLDNs https://twitter.com/BowandMerlin/status/1186732797446242306
@carlyannedavies
22 October 2019 20:56
@LastDaysoflifeR @WeLDnurses @salsa442 @MParry442 Sorry for the abbreviation I run out of words. #weldns @WeLDnurses @PaulaHopes1 @ElizabethFair74
@WeLDnurses
22 October 2019 20:56
Great to hear #WeLDNs https://twitter.com/bowandmerlin/status/1186732797446242306
@StaceyReesRNLD
22 October 2019 20:56
Another example of the CNLD working across settings #weldns https://twitter.com/ermate/status/1186731864125517826
@Mariejwills
22 October 2019 20:57
@WeLDnurses #WeLDNs the discussions documented as part of the reviews in the main case notes, these discussions would inform the care plan, but what i am questioning is whether they are referred to as advanced care plans? Care planning is meaningful and relevant but not called ACP’s
@WeLDnurses
22 October 2019 20:57
RT @StaceyReesRNLD: Another example of the CNLD working across settings #weldns https://twitter.com/ermate/status/1186731864125517826
@WeLDnurses
22 October 2019 20:57
RT @Mariejwills: @WeLDnurses #WeLDNs the discussions documented as part of the reviews in the main case notes, these discussions would info…
@Cathy_55555
22 October 2019 20:57
@GordonHill1 @ClaireW_UK When visiting 'main stream NHS hospitals'. The service is generally good...but at times there are no ajustments in place and distressing for not only the patient, but to those also waiting to be seen. Recipie for disaster in some cases! @WeLDnurses #weldns #ebp
@TuffreyWijne
22 October 2019 20:57
#weldns Hi everyone, this is my first ever twitter chat so bear with me! Obviously, end of life care for people with LD, including advance care planning (ACP) is a topic I'm keen to hear everyone's experience and opinions about, so I'm following with interest
@TuffreyWijne
22 October 2019 20:57
#weldns It seems to me that there is a lot of confusion about what ACP is, who it involves, and when it is important. It's not so much a specific plan or document, but a conversation between people with LD, families, carers, and those looking after them (incl healthcare staff)...
@TuffreyWijne
22 October 2019 20:57
#weldns ...about their future wishes and priorities for care. Documenting this is important of course but how you document it is not set in stone (or indeed in any particular format, easy-read or otherwise). Whatever suits everyone involved! http://www.goldstandardsframework.org.uk/advance-care-planning
@PedroTomisin
22 October 2019 20:58
#weLdns https://twitter.com/tuffreywijne/status/1186733320199163904
@salsa442
22 October 2019 20:58
@carlyannedavies @LastDaysoflifeR @WeLDnurses @MParry442 So true, there’s still a lot of work to do to support people to talk about how they want to die. Where I am @KristyEoLC has run several amazing #GoodDeathCafe events for all local people to encourage talking about hopes/fears/wishes #WeLDNs
@PedroTomisin
22 October 2019 20:58
RT @TuffreyWijne: #weldns ...about their future wishes and priorities for care. Documenting this is important of course but how you documen…
@PaulaHopes1
22 October 2019 20:58
@Shaun_LDNurse @WeLDnurses If u r a key person in the individuals life then it could be that u, acting in the persons best interest co-ordinate & advocate for the individual to get advanced care plan as well as appropriate care & treatment, sadly not all ppl with LD get their rights upheld at EOL #Weldns
@StaceyReesRNLD
22 October 2019 20:58
RT @TuffreyWijne: #weldns ...about their future wishes and priorities for care. Documenting this is important of course but how you documen…
@StaceyReesRNLD
22 October 2019 20:58
RT @TuffreyWijne: #weldns It seems to me that there is a lot of confusion about what ACP is, who it involves, and when it is important. It'…
@HazelPowell11
22 October 2019 20:58
RT @TuffreyWijne: #weldns It seems to me that there is a lot of confusion about what ACP is, who it involves, and when it is important. It'…
@WeLDnurses
22 October 2019 20:58
@TuffreyWijne Thank you for joining us, it’s good to have you with us :) thank you for sharing some great #ebp #weldns
@StephanieRossLN
22 October 2019 20:58
@MParry442 @LastDaysoflifeR @salsa442 @WeLDnurses competence but also we have not made an OK thing to talk about. I feel it is ok to talk about if someone is very unwell and clearly they will not get better; but not so ok if someone may die in next year. #WeLDNs
@WeLDnurses
22 October 2019 20:59
#WeLDNs https://twitter.com/sarahpr57058520/status/1186733441615826945
@MParry442
22 October 2019 20:59
@salsa442 @carlyannedavies @LastDaysoflifeR @WeLDnurses @KristyEoLC #WeLDns yes we had a great @DeathCafe event @USWCareSciences encouraging local community to talk. We need more
@kwelsh1
22 October 2019 20:59
RT @TuffreyWijne: #weldns ...about their future wishes and priorities for care. Documenting this is important of course but how you documen…
@WeLDnurses
22 October 2019 20:59
#WeLDNs https://twitter.com/elizabethfair74/status/1186733620440027137
@WeLDnurses
22 October 2019 21:00
Has any learning disability nurses used the tool ‘PALLI’ to decide if palliative care is required? How effective was it in practice? #WeLDNs
@BronwynHemsley
22 October 2019 21:00
RT @TuffreyWijne: #weldns Hi everyone, this is my first ever twitter chat so bear with me! Obviously, end of life care for people with LD,…
@LastDaysoflifeR
22 October 2019 21:00
@MParry442 @salsa442 @WeLDnurses #WeLDNs yes I think that but maybe there is degree of caution given the historical association between 'death wish and learning disability - and the new concerns of premature mortality - it's complicated educational emotional and morality
@BronwynHemsley
22 October 2019 21:00
RT @TuffreyWijne: #weldns It seems to me that there is a lot of confusion about what ACP is, who it involves, and when it is important. It'…
@salsa442
22 October 2019 21:00
RT @TuffreyWijne: #weldns Hi everyone, this is my first ever twitter chat so bear with me! Obviously, end of life care for people with LD,…
@PaulaHopes1
22 October 2019 21:00
@ElizabethFair74 @Shaun_LDNurse @WeLDnurses Completely agree that we might be the best placed ppl to do that, advocating with & empowering the person as much as possible in the process @WeLDnurses #weldns
@WeLDnurses
22 October 2019 21:00
RT @LastDaysoflifeR: @MParry442 @salsa442 @WeLDnurses #WeLDNs yes I think that but maybe there is degree of caution given the historical a…
@Mariejwills
22 October 2019 21:01
@SarahPr57058520 @WeLDnurses #WeLDNs #EOL its about capturing the salient points, but most importantly capturing the patient voice!
@WeLDnurses
22 October 2019 21:01
Great to hear :) #weldns https://twitter.com/elizabethfair74/status/1186734109231636480
@PaulaHopes1
22 October 2019 21:01
RT @MParry442: @WeLDnurses #weldns Does late diagnosis hamper advance care plans in LD patients?
@Cathy_55555
22 October 2019 21:01
@salsa442 @MParry442 @WeLDnurses Why the late diagnosis? I guess to lack of communication of symptoms? Do the GP's not see any symptoms if the service user can't express? If so, how do we combat this. How do we detect the signs?#weldns #ebp @WeLDnurses
@MParry442
22 October 2019 21:01
@StephanieRossLN @LastDaysoflifeR @salsa442 @WeLDnurses To be honest we have to make it ok to talk about death and dying and what someone wants all the time, a normal conversation #WeLDns
@StephanieRossLN
22 October 2019 21:02
@salsa442 @carlyannedavies @LastDaysoflifeR @WeLDnurses @MParry442 @KristyEoLC Does any one else have any experiences of running #GoodDeathCafe events? #WeLDNs
@TuffreyWijne
22 October 2019 21:02
@WeLDnurses #weldns It's really interesting to hear how LD nurses see their role in these conversations about people's wishes and priorities towards the end of life. E.g. how much do you work together with palliative care professionals? They help people with those discussions all the time
@WeLDnurses
22 October 2019 21:02
Absolutely! #weldns https://twitter.com/mariejwills/status/1186734298273079296
@StaceyReesRNLD
22 October 2019 21:02
@ElizabethFair74 @Shaun_LDNurse @WeLDnurses @PaulaHopes1 Totally agree. Research suggests the CNLD is the key constant and best placed to coordinate #weldns
@ChurcherClare
22 October 2019 21:02
@WeLDnurses We have to remember EOL is extremely important to get right, but do we diagnose dying too late to put plans in place, or is lack of confidence or competence to diagnose dying as they may have multiple problems? #WeLDNs
@WeLDnurses
22 October 2019 21:02
RT @TuffreyWijne: @WeLDnurses #weldns It's really interesting to hear how LD nurses see their role in these conversations about people's wi…
@kwelsh1
22 October 2019 21:02
RT @salsa442: @WeLDnurses @macmillancancer https://www.macmillan.org.uk/information-and-support/resources-and-publications/videos/coping-with-cancer/cancer-and-disabilities And here’s another! Really useful resources #WeLDNs
@PaulaHopes1
22 October 2019 21:03
@MParry442 @WeLDnurses I think as well that ppl with LD do often experience late diagnosis due to a number of barriers #healthliteracy #communication #diagnosticovershadowing lack of education in the staff team or lack of access to appropriate support for physical health #weldns
@ChurcherClare
22 October 2019 21:03
@StephanieRossLN @WeLDnurses @salsa442 @carlyannedavies @LastDaysoflifeR @MParry442 @KristyEoLC We ran one in USW and it was a phenomenal success @MParry442 #WeLDNs
@livingwelldying
22 October 2019 21:03
RT @TuffreyWijne: #weldns ...about their future wishes and priorities for care. Documenting this is important of course but how you documen…
@aroomofmyown1
22 October 2019 21:03
RT @TuffreyWijne: #weldns Hi everyone, this is my first ever twitter chat so bear with me! Obviously, end of life care for people with LD,…
@chris_dlamini
22 October 2019 21:04
#WeLDNs l hope l am not jumping the gun here but where are the children with learning disabilities here? Seems to be mostly adult based. How is EOL care managed in children's services?
@salsa442
22 October 2019 21:04
@Cathy_55555 @MParry442 @WeLDnurses Late diagnoses can happen for a variety of reasons, lower uptake on screening programmes, dare I say if diagnostic overshadowing in addition to your reasons, training and education in primary care maybe? More primary care LD liaison nurses? #WeLDNs
@PaulaHopes1
22 October 2019 21:04
RT @TuffreyWijne: @WeLDnurses #weldns It's really interesting to hear how LD nurses see their role in these conversations about people's wi…
@Mariejwills
22 October 2019 21:04
@PaulaHopes1 @ElizabethFair74 @Shaun_LDNurse @WeLDnurses #EOL #WeLDNs it is about ensuring that the patient voice is heard/included. Advocating, empowering, enabling and fulfilling their wishes in ensuring a #DignifiedDeath
@paularich1977
22 October 2019 21:04
@MParry442 @WeLDnurses @StephanieRossLN @LastDaysoflifeR @salsa442 I agree, I think it’s a conversation that we are all scared of having, but especially with someone with a learning disability.... are we assuming they won’t understand? Trying to protect them, by taking their right to plan their death away? #weldns
@LucyAnn_Spencer
22 October 2019 21:04
@WeLDnurses I've never used it and never heard of it up until now. Interested to hear other peoples views who have used it. #WeLDNs
@WeLDnurses
22 October 2019 21:04
Good question Chris, any experience from anyone? #weldns https://twitter.com/chris_dlamini/status/1186734976345280514
@WeLDnurses
22 October 2019 21:05
RT @Mariejwills: @PaulaHopes1 @ElizabethFair74 @Shaun_LDNurse @WeLDnurses #EOL #WeLDNs it is about ensuring that the patient voice is heard…
@PaulaHopes1
22 October 2019 21:05
@ChurcherClare & @MParry442 might be able to answer this @WeLDnurses #weldns https://twitter.com/stephanierossln/status/1186734497246658563
@ElizabethFair74
22 October 2019 21:05
RT @TuffreyWijne: #weldns It seems to me that there is a lot of confusion about what ACP is, who it involves, and when it is important. It'…
@WeLDnurses
22 October 2019 21:05
#weldns https://twitter.com/sarahpr57058520/status/1186734880820023297
@PaulaHopes1
22 October 2019 21:05
RT @Mariejwills: @PaulaHopes1 @ElizabethFair74 @Shaun_LDNurse @WeLDnurses #EOL #WeLDNs it is about ensuring that the patient voice is heard…
@ElizabethFair74
22 October 2019 21:05
RT @TuffreyWijne: #weldns ...about their future wishes and priorities for care. Documenting this is important of course but how you documen…
@ElizabethFair74
22 October 2019 21:05
RT @Mariejwills: @PaulaHopes1 @ElizabethFair74 @Shaun_LDNurse @WeLDnurses #EOL #WeLDNs it is about ensuring that the patient voice is heard…
@WeLDnurses
22 October 2019 21:06
Great to hear, does this happen in other areas? #weldns https://twitter.com/stephanierossln/status/1186734890819182597
@TuffreyWijne
22 October 2019 21:06
@LastDaysoflifeR @MParry442 @salsa442 @WeLDnurses #weldns Yes I agree, it is complicated. I'm also somewhat alarmed to hear that some LD services have been told by CQC inspectors that EVERYONE should have an end of life plan... including young healthy people. Is this true?? or just hearsay?
@WeLDnurses
22 October 2019 21:06
#WeLDNs
@Cathy_55555
22 October 2019 21:06
@salsa442 @MParry442 @WeLDnurses It is a tricky one. Especially in the LD field. I wonder what we can do to try and initiate a way that perhaps screening can be done routinely? #weldns @WeLDnurses #ebp
@salsa442
22 October 2019 21:06
RT @TuffreyWijne: @LastDaysoflifeR @MParry442 @salsa442 @WeLDnurses #weldns Yes I agree, it is complicated. I'm also somewhat alarmed to he…
@WeLDnurses
22 October 2019 21:06
RT @TuffreyWijne: @LastDaysoflifeR @MParry442 @salsa442 @WeLDnurses #weldns Yes I agree, it is complicated. I'm also somewhat alarmed to he…
@PaulaHopes1
22 October 2019 21:06
RT @TuffreyWijne: @LastDaysoflifeR @MParry442 @salsa442 @WeLDnurses #weldns Yes I agree, it is complicated. I'm also somewhat alarmed to he…
@StaceyReesRNLD
22 October 2019 21:06
@chris_dlamini Is this because health appears to be more coordinated in children’s services i.e by the paediatrician compared to diff specialists??#WeLDns
@PaulaHopes1
22 October 2019 21:06
RT @WeLDnurses: Great to hear, does this happen in other areas? #weldns https://twitter.com/stephanierossln/status/1186734890819182597
@Mariejwills
22 October 2019 21:07
@Cathy_55555 @salsa442 @MParry442 @WeLDnurses #EOL #WeLDNs it is often seen how the physical health needs of individuals are overlooked, a lack of adherence to physical health checks and the need for parity in physical health needs of the individuals
@chris_dlamini
22 October 2019 21:07
@TuffreyWijne @LastDaysoflifeR @MParry442 @salsa442 @WeLDnurses I am not aware of this #weldns
@StephanieRossLN
22 October 2019 21:07
@ChurcherClare @WeLDnurses @salsa442 @carlyannedavies @LastDaysoflifeR @MParry442 @KristyEoLC Thank you, I would be interested to hear more about it, is the best way to message you? #WeLDNs
@PaulaHopes1
22 October 2019 21:07
RT @TuffreyWijne: #weldns ...about their future wishes and priorities for care. Documenting this is important of course but how you documen…
@WeLDnurses
22 October 2019 21:07
RT @Mariejwills: @Cathy_55555 @salsa442 @MParry442 @WeLDnurses #EOL #WeLDNs it is often seen how the physical health needs of individuals…
@TuffreyWijne
22 October 2019 21:07
@StephanieRossLN @WeLDnurses #weldns Best practice in action! So good to hear.
@salsa442
22 October 2019 21:07
@TuffreyWijne @LastDaysoflifeR @MParry442 @WeLDnurses I really hope this is just hearsay #WeLDNs
@ChurcherClare
22 October 2019 21:07
@paularich1977 @WeLDnurses @MParry442 @StephanieRossLN @LastDaysoflifeR @salsa442 We should never assume, however this is a constant problem whoever you speak to, not just a person with learning disabilities. We need to make the conversation about death and dying as normal as we talk about birth #WeLDNs
@chris_dlamini
22 October 2019 21:08
@StaceyReesRNLD Maybe, maybe not. But what is the role of the LD nurse? #weldns
@WeLDnurses
22 October 2019 21:08
#weldns https://twitter.com/lastdaysoflifer/status/1186735690295468034
@kwelsh1
22 October 2019 21:08
@TuffreyWijne @WeLDnurses #weldns In Devon we co-facilitate an Advanced Care Planning session with @RowcroftHospice & the session included a lady with learning disabilities who had been supported by a PCLN to do her ACP sharing it with everyone. So helpful to have the voice in the room ??
@LiamFreeman1991
22 October 2019 21:09
@LucyAnn_Spencer @WeLDnurses I am with @LucyAnn_Spencer on this one. Is there any 'PALLI' experts out there? @WeLDnurses #weLDNs
@WeLDnurses
22 October 2019 21:09
We agree too Tomisin #weldns https://twitter.com/pedrotomisin/status/1186735701498515456
@chris_dlamini
22 October 2019 21:09
@LiamFreeman1991 @LucyAnn_Spencer @WeLDnurses Not me #weldns
@LastDaysoflifeR
22 October 2019 21:09
@TuffreyWijne #WeLDNs good points - maybe the key problem doesn't have to be the format or following a recipe or immediately involving the immediately maybe its when to start thinking it might be necessary
@WeLDnurses
22 October 2019 21:10
#WeLDNs https://twitter.com/elizabethfair74/status/1186736140369518593
@PaulaHopes1
22 October 2019 21:10
@paularich1977 @MParry442 @WeLDnurses @StephanieRossLN @LastDaysoflifeR @salsa442 Sometimes ppl with LD r supported by very young staff teams who do not have language or experience to support discussions around death & dying, there can be assumptions about lack of understanding & people can be uncomfortable with the concepts #weldns
@WeLDnurses
22 October 2019 21:10
RT @kwelsh1: @TuffreyWijne @WeLDnurses #weldns In Devon we co-facilitate an Advanced Care Planning session with @RowcroftHospice & the sess…
@StaceyReesRNLD
22 October 2019 21:10
RT @kwelsh1: @TuffreyWijne @WeLDnurses #weldns In Devon we co-facilitate an Advanced Care Planning session with @RowcroftHospice & the sess…
@livingwelldying
22 October 2019 21:10
Good evening here to learn so thank you #weldns https://twitter.com/tuffreywijne/status/1186734500576976900
@salsa442
22 October 2019 21:10
@WeLDnurses It was a long time ago but when I worked with children with LD who had life-limiting conditions they had good access to hospice care and supportive care plans (essentially EoL care plans under a different name) #WeLDNs
@WeLDnurses
22 October 2019 21:10
RT @LastDaysoflifeR: @TuffreyWijne #WeLDNs good points - maybe the key problem doesn't have to be the format or following a recipe or imme…
@Mariejwills
22 October 2019 21:10
@MParry442 @StephanieRossLN @LastDaysoflifeR @salsa442 @WeLDnurses #EOL #WeLDNs we must enable these conversations with the individuals through supporting and empowering them to discuss their wishes for a #DignifiedDeath
@PaulaHopes1
22 October 2019 21:10
RT @livingwelldying: Good evening here to learn so thank you #weldns https://twitter.com/tuffreywijne/status/1186734500576976900
@salsa442
22 October 2019 21:11
@WeLDnurses Yes where I am there are great links with the LD team and the palliative care team, both in acute and community services #WeLDNs
@StaceyReesRNLD
22 October 2019 21:11
@LastDaysoflifeR @Cathy_55555 @salsa442 @MParry442 @WeLDnurses Interesting. So now we have people with LD that are living longer what does this mean for them? #weldns
@WeLDnurses
22 October 2019 21:11
Lots of great discussion here tonight...next question. What ethical issues have you debated with regards to people with learning disabilities being told they are dying? #WeLDNs
@WeLDnurses
22 October 2019 21:11
RT @Mariejwills: @MParry442 @StephanieRossLN @LastDaysoflifeR @salsa442 @WeLDnurses #EOL #WeLDNs we must enable these conversations with th…
@PaulaHopes1
22 October 2019 21:11
@livingwelldying It’s good to have you with us, great to see lots of questions coming up, I think we could have a few more chats about this, so much for us all to learn and improve TVs to be made all round #weldns
@kwelsh1
22 October 2019 21:12
@chris_dlamini I would think if children have life limited conditions they are likely to have core team around them & possibly Hospice / Hospital services involved who should be well placed to have these discussions. @CHSW do you have any thoughts? @LucyAlexandria is an expert too. ?? #weldns
@Victori13020597
22 October 2019 21:12
@TuffreyWijne @WeLDnurses Swansea CTLD are currently joint working with Ty Olwen Hospice, this includes desensitisation work and monthly reviews of a lady who choses to remain living independently #WeLDNs @ElizabethFair74
@PaulaHopes1
22 October 2019 21:12
#weldns https://twitter.com/lastdaysoflifer/status/1186735690295468034
@ChurcherClare
22 October 2019 21:12
@salsa442 @Cathy_55555 @MParry442 @WeLDnurses this is difficult, as the screening programs do not know who they are sending the letters to. Therefore is you are looking after someone with a LD, you need to let the screening service know they can offer double appts & visits prior to the screening taking place #WeLDNs
@LucyAnn_Spencer
22 October 2019 21:12
@WeLDnurses It was felt that it wasn't in the lady's best interests to be told that she was dying. #WeLDNs
@Cathy_55555
22 October 2019 21:12
@Mariejwills @salsa442 @MParry442 @WeLDnurses Definitely. I wonder how we can shout louder for these vulnerable people? Politics are crazy now so i guess these people will put back on the back burner and be overshadowed in our current state of government affairs. I wonder what we can do?? @WeLDnurses #weldns
@StephanieRossLN
22 October 2019 21:12
@TuffreyWijne Yes, thank you. A good reminder. I think the desire for a tool comes from worrying about doing it wrong.. (personal reflection). #WeLDNs
@PedroTomisin
22 October 2019 21:13
RT @Mariejwills: @MParry442 @StephanieRossLN @LastDaysoflifeR @salsa442 @WeLDnurses #EOL #WeLDNs we must enable these conversations with th…
@WeLDnurses
22 October 2019 21:13
@PaulaHopes1 @livingwelldying Yes we agree!! So much great stuff coming through my fingers are on fire!!! Love it!!! #weldns
@PaulaHopes1
22 October 2019 21:13
This is not what ACP is about, where is the individualised, person centred approach. These things rely on good relationships and developing an approach to gathering information, knowing what is meaningful and helpful for someone #Weldns https://twitter.com/tuffreywijne/status/1186737023329157120
@kwelsh1
22 October 2019 21:13
#weldns Useful resource before I forget. https://www.england.nhs.uk/wp-content/uploads/2017/08/delivering-end-of-life-care-for-people-with-learning-disability.pdf
@PaulaHopes1
22 October 2019 21:13
RT @WeLDnurses: @PaulaHopes1 @livingwelldying Yes we agree!! So much great stuff coming through my fingers are on fire!!! Love it!!! #weldns
@chris_dlamini
22 October 2019 21:13
@WeLDnurses If there are communication and capacity issues, l know the headaches it presents. Who delivers the message and how? #weldns
@WeLDnurses
22 October 2019 21:14
Thanks for sharing Katy :) #ebp #weldns https://twitter.com/kwelsh1/status/1186737400082587651
@PaulaHopes1
22 October 2019 21:14
RT @kwelsh1: #weldns Useful resource before I forget. https://www.england.nhs.uk/wp-content/uploads/2017/08/delivering-end-of-life-care-for-people-with-learning-disability.pdf
@PaulaHopes1
22 October 2019 21:14
@kwelsh1 Thx #Weldns
@LiamFreeman1991
22 October 2019 21:14
@VickiG1086 @LucyAnn_Spencer @WeLDnurses https://www.ncbi.nlm.nih.gov/m/pubmed/29107852/ Here is #edp link to development of the tool. Hopefully it works #weldns
@salsa442
22 October 2019 21:14
@TuffreyWijne @LastDaysoflifeR @MParry442 @WeLDnurses That’s really distressing, it shouldn’t be generically applied to everyone with no reason or rationale, especially not fit healthy young people #WeLDNs
@Shaun_LDNurse
22 October 2019 21:14
@salsa442 @WeLDnurses @Cathy_55555 @MParry442 ... we can’t forget #HealthAnxiety as well. People and families may not wish [or too anxious] to interact with #Healthcare services or #HCPs becuase of previous negative experiences or simply becuase it’s too stressful. #WeLDNs
@Mariejwills
22 October 2019 21:15
@PaulaHopes1 @paularich1977 @MParry442 @WeLDnurses @StephanieRossLN @LastDaysoflifeR @salsa442 #EOL #WeLDNs it is also about having the necessary skills, whether this be through life experience, or through exploration and awareness building with peers/training etc. But we need to have the confirdence to be able to have these difficult discussions
@StaceyReesRNLD
22 October 2019 21:15
@TuffreyWijne @WeLDnurses LD nurses should be working with palliative care nurses, and it does happen. However, not enough. #weldns
@Cathy_55555
22 October 2019 21:15
@WeLDnurses Wow. I have a strong opinion regarding this. I feel that there is not adequate advocacy in place sometimes. (In my experience) @WeLDnurses #weldns
@PaulaHopes1
22 October 2019 21:15
RT @Mariejwills: @PaulaHopes1 @paularich1977 @MParry442 @WeLDnurses @StephanieRossLN @LastDaysoflifeR @salsa442 #EOL #WeLDNs it is also abo…
@WeLDnurses
22 October 2019 21:16
Communication is always a must, but even more vital in these cases #WeLDNs https://twitter.com/vickig1086/status/1186737895140478977
@chris_dlamini
22 October 2019 21:16
@WeLDnurses One big ethical issue l have seen in practice is actually determining when to put EoL in place. Some staff appear to struggle with the concept. #weldns
@PaulaHopes1
22 October 2019 21:16
RT @WeLDnurses: Communication is always a must, but even more vital in these cases #WeLDNs https://twitter.com/vickig1086/status/1186737895140478977
@ChurcherClare
22 October 2019 21:16
@VickiG1086 @salsa442 @Cathy_55555 @MParry442 @WeLDnurses definitely #WeLDNs
@PaulaHopes1
22 October 2019 21:17
RT @ChurcherClare: @VickiG1086 @salsa442 @Cathy_55555 @MParry442 @WeLDnurses definitely #WeLDNs
@LucyAnn_Spencer
22 October 2019 21:17
@ElizabethFair74 @WeLDnurses I wasn't involved in any of the meetings and wasn't supporting the lady directly. I believe that it was felt that she would become very anxious if she knew that she was dying. I didn't agree with this. I felt that she had a right to know. #WeLDNs
@WeLDnurses
22 October 2019 21:17
What are your experiences of learning disability nurses using Tuffrey-Wijne ‘Breaking Bad News Model’? #WeLDNs #EbP
@StephanieRossLN
22 October 2019 21:17
@WeLDnurses When a family member felt it would be harmful to tell but others felt it was their right I used a really helpful article with a model.. and right now have no idea of title!! #WeLDNs
@WeLDnurses
22 October 2019 21:17
#WeLDNs https://twitter.com/sarahpr57058520/status/1186738096064356355
@kwelsh1
22 October 2019 21:17
@TuffreyWijne @LastDaysoflifeR @MParry442 @salsa442 @WeLDnurses #weldns I have also heard this too. Whilst I consider it’s a conversation to be had should someone’s health begin to deteriorate, it should be what is considered right for the person in any circumstance as opposed to ‘everyone has to have one’. ??
@StaceyReesRNLD
22 October 2019 21:17
@LastDaysoflifeR @Cathy_55555 @salsa442 @MParry442 @WeLDnurses #weldns @LastDaysoflifeR I think this is another chat in itself
@WeLDnurses
22 October 2019 21:18
RT @kwelsh1: @TuffreyWijne @LastDaysoflifeR @MParry442 @salsa442 @WeLDnurses #weldns I have also heard this too. Whilst I consider it’s a c…
@TuffreyWijne
22 October 2019 21:18
@PaulaHopes1 #weldns Absolutely right! As I said, I think there's a lot of misunderstanding about what end of life care (and advance care planning) is. Definitely not a tick box exercise! This is why I'm always somewhat hesitant when people ask me about tools, e.g. easy-read end of life plans
@WeLDnurses
22 October 2019 21:18
#weldns https://twitter.com/elizabethfair74/status/1186738468535328771
@PedroTomisin
22 October 2019 21:18
RT @TuffreyWijne: @PaulaHopes1 #weldns Absolutely right! As I said, I think there's a lot of misunderstanding about what end of life care (…
@Mariejwills
22 October 2019 21:18
@Victori13020597 @TuffreyWijne @WeLDnurses @ElizabethFair74 A true example of #WorkingTogether o meet the needs and a person centred approach for the individuals in our care! #EOL #WeLDNs
@PaulaHopes1
22 October 2019 21:19
RT @TuffreyWijne: @PaulaHopes1 #weldns Absolutely right! As I said, I think there's a lot of misunderstanding about what end of life care (…
@Cathy_55555
22 October 2019 21:19
@ElizabethFair74 @WeLDnurses Agreed. Not ethical always though right? ?? @WeLDnurses #weldns
@WeLDnurses
22 October 2019 21:19
Yes, we’d be happy to host one again #weldns https://twitter.com/staceyreesrnld/status/1186738476307365893
@salsa442
22 October 2019 21:19
RT @WeLDnurses: Yes, we’d be happy to host one again #weldns https://twitter.com/staceyreesrnld/status/1186738476307365893
@WeLDnurses
22 October 2019 21:19
Are other people experiencing this? #weldns https://twitter.com/elizabethfair74/status/1186738828490543104
@WeLDnurses
22 October 2019 21:20
RT @Cathy_55555: @ElizabethFair74 @WeLDnurses Agreed. Not ethical always though right? ?? @WeLDnurses #weldns
@WeLDnurses
22 October 2019 21:20
RT @TuffreyWijne: @PaulaHopes1 #weldns Absolutely right! As I said, I think there's a lot of misunderstanding about what end of life care (…
@chris_dlamini
22 October 2019 21:20
@TuffreyWijne @PaulaHopes1 Yes. Just because we know someone is dying, it does not mean we give EoL care. There is more to it. Do people actually understand EoL care? #weldns
@Cathy_55555
22 October 2019 21:20
@VickiG1086 @ChurcherClare @salsa442 @MParry442 @WeLDnurses Definitely the 'person' first...@WeLDnurses #weldns
@Shaun_LDNurse
22 October 2019 21:20
@WeLDnurses May I draw attention to a wider [but related] ethical issue #WeLDNs? Becuase of the way services [typically] are, and access to them is restricted, there are many individuals with #LearningDisabilities and #Autism who have difficulties getting support at #EOL.
@WeLDnurses
22 October 2019 21:21
RT @Cathy_55555: @VickiG1086 @ChurcherClare @salsa442 @MParry442 @WeLDnurses Definitely the 'person' first...@WeLDnurses #weldns
@PaulaHopes1
22 October 2019 21:21
@TuffreyWijne There are some great tools out there, so much thought, research and feedback from #PWLD has facilitated the development of them but one size does not meet all needs & a therapeutic relationship/person centred approach has to inform the discussions re #ACP & #EOL #weldns
@MParry442
22 October 2019 21:21
@BowandMerlin @WeLDnurses #WeLDns brilliant ??
@StephanieRossLN
22 October 2019 21:21
@WeLDnurses This has been a really helpful tool when talking with our palliative care specialists as to how they can support meaningful communication for people with learning disabilities #WeLDNs
@StaceyReesRNLD
22 October 2019 21:21
RT @WeLDnurses: Yes, we’d be happy to host one again #weldns https://twitter.com/staceyreesrnld/status/1186738476307365893
@LiamFreeman1991
22 October 2019 21:22
@WeLDnurses It depends on the nursing ethics as the whole, from remembering that they should have control of their choices even in end of life care (autonomy). To justice where everyone has the right to be treated fairly and Equal to general population. #weldns
@kwelsh1
22 October 2019 21:22
@WeLDnurses I feel that the way in which news is delivered to someone that they are dying can be given in a ‘softer’ way by saying that the Doctors can’t make you better but they can help you not feel any pain and be comfortable. Again depends on the individual #weldns
@WeLDnurses
22 October 2019 21:22
Important to consider, are these people able to access support, are we supporting our colleagues in other areas indirectly? #weldns https://twitter.com/shaun_ldnurse/status/1186739241268760576
@WeLDnurses
22 October 2019 21:22
RT @MParry442: @BowandMerlin @WeLDnurses #WeLDns brilliant ??
@Mariejwills
22 October 2019 21:23
@ChurcherClare @salsa442 @Cathy_55555 @MParry442 @WeLDnurses #EOL #WeLDNs I’m involved in a #QI initiative with a CLDT in our HB looking at how to improve the uptake of individuals with LD in screening! This requires a whole system approach, including primary and secondary care services as well as specialist services too.
@WeLDnurses
22 October 2019 21:23
RT @Mariejwills: @ChurcherClare @salsa442 @Cathy_55555 @MParry442 @WeLDnurses #EOL #WeLDNs I’m involved in a #QI initiative with a CLDT in…
@PaulaHopes1
22 October 2019 21:23
#weldns https://twitter.com/elizabethfair74/status/1186736140369518593
@PaulaHopes1
22 October 2019 21:23
#weldns https://twitter.com/elizabethfair74/status/1186734984230588416
@WeLDnurses
22 October 2019 21:24
@Mariejwills @ChurcherClare @salsa442 @Cathy_55555 @MParry442 Another great chat topic, we’d love to support you to host one #weldns
@WeLDnurses
22 October 2019 21:24
RT @PaulaHopes1: #weldns https://twitter.com/elizabethfair74/status/1186736140369518593
@PaulaHopes1
22 October 2019 21:24
#weldns https://twitter.com/elizabethfair74/status/1186730502453108737
@WeLDnurses
22 October 2019 21:24
RT @PaulaHopes1: #weldns https://twitter.com/elizabethfair74/status/1186734984230588416
@WeLDnurses
22 October 2019 21:24
RT @PaulaHopes1: #weldns https://twitter.com/elizabethfair74/status/1186730502453108737
@TuffreyWijne
22 October 2019 21:24
@ElizabethFair74 @salsa442 @LastDaysoflifeR @MParry442 @WeLDnurses #weldns Oh dear
@LastDaysoflifeR
22 October 2019 21:24
@LiamFreeman1991 @LucyAnn_Spencer @WeLDnurses #WeLDNs the PALLI is innovative and needs further testing to see how accurate it is in the prognosis of death - but perhaps what we need is help to anticipate that dying might be possible not necessarily probable - we have used the Surprise Question in a recent research study
@PaulaHopes1
22 October 2019 21:24
#weldns https://twitter.com/vickig1086/status/1186740051054616578
@WeLDnurses
22 October 2019 21:25
#weldns https://twitter.com/elizabethfair74/status/1186740047510413312
@PaulaHopes1
22 October 2019 21:25
#weldns https://twitter.com/elizabethfair74/status/1186730502453108737
@ChurcherClare
22 October 2019 21:25
@Mariejwills @WeLDnurses @salsa442 @Cathy_55555 @MParry442 This is fabulous news #WeLDNs
@WeLDnurses
22 October 2019 21:25
RT @LastDaysoflifeR: @LiamFreeman1991 @LucyAnn_Spencer @WeLDnurses #WeLDNs the PALLI is innovative and needs further testing to see how ac…
@Mariejwills
22 October 2019 21:25
@LucyAnn_Spencer @WeLDnurses #EOL #WeLDNs I agreed the rights of individuals must be safeguarded. She had a right to know as you say!
@PaulaHopes1
22 October 2019 21:25
RT @Mariejwills: @ChurcherClare @salsa442 @Cathy_55555 @MParry442 @WeLDnurses #EOL #WeLDNs I’m involved in a #QI initiative with a CLDT in…
@WeLDnurses
22 October 2019 21:25
Wow!! What a fast and informative chat!! With 5 minutes to go, what will you take away from tonight’s discussion? #WeLDNs
@PaulaHopes1
22 October 2019 21:25
RT @ChurcherClare: @Mariejwills @WeLDnurses @salsa442 @Cathy_55555 @MParry442 This is fabulous news #WeLDNs
@kwelsh1
22 October 2019 21:26
A useful guide? #weldns https://www.stlukes-hospice.org.uk/wp-content/uploads/2017/11/Easy-Read-Future-Care-Plan-Guidance-for-Support-Staff-feb-2016.pdf
@WeLDnurses
22 October 2019 21:26
RT @PaulaHopes1: #weldns https://twitter.com/vickig1086/status/1186740051054616578
@StaceyReesRNLD
22 October 2019 21:26
RT @Mariejwills: @ChurcherClare @salsa442 @Cathy_55555 @MParry442 @WeLDnurses #EOL #WeLDNs I’m involved in a #QI initiative with a CLDT in…
@MParry442
22 October 2019 21:26
@kwelsh1 @TuffreyWijne @LastDaysoflifeR @salsa442 @WeLDnurses #WeLDns there is a lot to be said for people to have the discussion of what they may or not want at Eof L when they are well. However this is a drip drip / long approach and should never be forced on anyone LD or otherwise
@WeLDnurses
22 October 2019 21:26
RT @PaulaHopes1: #weldns https://twitter.com/elizabethfair74/status/1186730502453108737
@PaulaHopes1
22 October 2019 21:26
RT @MParry442: @kwelsh1 @TuffreyWijne @LastDaysoflifeR @salsa442 @WeLDnurses #WeLDns there is a lot to be said for people to have the discu…
@PaulaHopes1
22 October 2019 21:26
RT @kwelsh1: A useful guide? #weldns https://www.stlukes-hospice.org.uk/wp-content/uploads/2017/11/Easy-Read-Future-Care-Plan-Guidance-for-Support-Staff-feb-2016.pdf
@WeLDnurses
22 October 2019 21:26
More great #ebp here to check out #WeLDNs https://twitter.com/kwelsh1/status/1186740508816752643
@PaulaHopes1
22 October 2019 21:26
RT @WeLDnurses: Wow!! What a fast and informative chat!! With 5 minutes to go, what will you take away from tonight’s discussion? #WeLDNs
@PaulaHopes1
22 October 2019 21:26
RT @Mariejwills: @LucyAnn_Spencer @WeLDnurses #EOL #WeLDNs I agreed the rights of individuals must be safeguarded. She had a right to know…
@TuffreyWijne
22 October 2019 21:26
@PaulaHopes1 #weldns Yes I agree, lots of great work going on and some of it resulting in great resources, but the most important tool is the person using it. My worry is that tools are used as an end in itself rather than a means, e.g. a way of documenting
@WeLDnurses
22 October 2019 21:27
RT @Mariejwills: @LucyAnn_Spencer @WeLDnurses #EOL #WeLDNs I agreed the rights of individuals must be safeguarded. She had a right to know…
@PaulaHopes1
22 October 2019 21:27
RT @TuffreyWijne: @PaulaHopes1 #weldns Yes I agree, lots of great work going on and some of it resulting in great resources, but the most i…
@Mariejwills
22 October 2019 21:27
@Cathy_55555 @salsa442 @MParry442 @WeLDnurses I made a comment on another tweet, but I’m currently involved in a #QI initative looking at increasing the uptake of screening. This is so important! #EOL #WeLDNs
@WeLDnurses
22 October 2019 21:27
What are people’s thoughts on this? #weldns https://twitter.com/elizabethfair74/status/1186740674881822720
@LiamFreeman1991
22 October 2019 21:27
@VickiG1086 @WeLDnurses Exactly! #weldns
@chris_dlamini
22 October 2019 21:28
@WeLDnurses Fabulous and experienced ldns out there doing an amazing job. I am nowhere near a novice in this area and l have learnt more in an hour than l ever did training. Thank you #weldns
@AWolke
22 October 2019 21:28
RT @kwelsh1: A useful guide? #weldns https://www.stlukes-hospice.org.uk/wp-content/uploads/2017/11/Easy-Read-Future-Care-Plan-Guidance-for-Support-Staff-feb-2016.pdf
@WeLDnurses
22 October 2019 21:28
@Mariejwills @Cathy_55555 @salsa442 @MParry442 We’d love to hear more about this :) #weldns
@PaulaHopes1
22 October 2019 21:28
@TuffreyWijne Completely agree the skill in building a relationship & finding out what the person needs & wants to know, so important #EOL #Weldns
@WeLDnurses
22 October 2019 21:28
RT @TuffreyWijne: @PaulaHopes1 #weldns Yes I agree, lots of great work going on and some of it resulting in great resources, but the most i…
@ElizabethFair74
22 October 2019 21:28
RT @LastDaysoflifeR: @LiamFreeman1991 @LucyAnn_Spencer @WeLDnurses #WeLDNs the PALLI is innovative and needs further testing to see how ac…
@AWolke
22 October 2019 21:28
RT @kwelsh1: #weldns Useful resource before I forget. https://www.england.nhs.uk/wp-content/uploads/2017/08/delivering-end-of-life-care-for-people-with-learning-disability.pdf
@kwelsh1
22 October 2019 21:28
@WeLDnurses #weldns Continue to have the conversation re: ACP / EOL Care with people with learning disabilities & work with our fabulous @RowcroftHospice teams who have provided excellent support to people with learning disabilities & their families ?? #keeptalking
@StephanieRossLN
22 October 2019 21:29
RT @TuffreyWijne: @PaulaHopes1 #weldns Yes I agree, lots of great work going on and some of it resulting in great resources, but the most i…
@chris_dlamini
22 October 2019 21:29
@kwelsh1 @WeLDnurses @RowcroftHospice Katy you are fab #weldns
@WeLDnurses
22 October 2019 21:29
@chris_dlamini This is what we love to hear, it’s great when as a community we can help to build each other’s knowledge #WeLDNs #SharedLearning
@WeLDnurses
22 October 2019 21:29
RT @kwelsh1: @WeLDnurses #weldns Continue to have the conversation re: ACP / EOL Care with people with learning disabilities & work with ou…
@livingwelldying
22 October 2019 21:29
RT @TuffreyWijne: @PaulaHopes1 #weldns Yes I agree, lots of great work going on and some of it resulting in great resources, but the most i…




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