Here are the questions asked during the tweetchat and some on the answers that resonated most with @WeNurses:

QUESTION 1

So here is the first questions: Where and how are learning disability nurses having a positive impact on the lives of people with a learning disability and their families?#WeLDNs @WeLDnurses

— FoNS (@FoNScharity) May 22, 2018

We have so much anecdotal evidence but just not enough written down. Probably the best example of your looking at evidence is the acute liaison role #Weldns

— sam abdulla (@samabdulla) May 22, 2018

My team are currently working hard to increase cancer screening rates in my local area through education for both PWLD, families/carers & primary care staff on the screening process,reasonable adjustments & the importance of PWLD having access to and completing screening #weLDNs

— Catherine Magee (@CatherineMage25) May 22, 2018

Just about everywhere and anywhere. LD nurses are versatile, adaptable and dynamic. They work with children, adults and older people in generic and specialist health and social care, in education and forensic etc. etc

— Gwen Moulster (@GwenMoulster) May 22, 2018

QUESTION 2

Question 2: Why is learning disability nursing an essential role to sustain in primary care above and beyond other people and professionals who deliver services? #WeLDNs @WeLDnurses

— FoNS (@FoNScharity) May 22, 2018

#WeLDNs because we have to do something about increased morbidity and premature death and primary care need help to change things for the better. LD nurses are often the best reasonable adjustment there is.

— Gwen Moulster (@GwenMoulster) May 22, 2018

People with learning disabilities may need additional support to access primary healthcare and the RNLD can assist through working with them, their families and Primary Care Teams to make sure that there is equitable access #WeLDNs

— Ruth Northway RN(LD) (@NorthwayRuth) May 22, 2018

People with LD are the most vulnerable people society! And our prone to be diagnositically overshadowed and over medicated! We must all work together to prevent this from happening #WeLDNs 🐝

— LDstudentbuzz (@LDstudentbuzz) May 22, 2018

QUESTION 3

Ready for another question? Question 3: To what extent is the role of learning disability nursing understood in primary care and how can this be strengthened? #WeLDNs

— FoNS (@FoNScharity) May 22, 2018

I don't believe the role is understood, at recent appointment with a nurse, I was talking about training as an LD nurse, she knew very little about the role which completely shocked me. #weLDNs

— Emma Campbell (@emma_c20) May 22, 2018

Primary care arent as aware of Comm. LD teams as they should be. This link could and should be strengthened by visibility of CNLDs #weLDNs

— Stacey Rees RN(LD) (@StaceyReesRNLD) May 22, 2018

#weLDNS Very fortunate that in Devon we have been doing a Primary Care Liaison role informally since 2009 & formally redesigned services in 2015 so Primary Care aware of how we can help them. Find a way in to each practice. Attend meetings, do a joint clinic with nurse

— Katy Welsh (@kwelsh1) May 22, 2018

QUESTION 4

Thinking about all the comments so far, Question 4: What support do learning disability nurses working at the frontline of services in primary care need to strengthen their role? #WeLDNs

— FoNS (@FoNScharity) May 22, 2018

Would national benchmarking of the role be useful? #weLDNs

— Jonathan Beebee (@JonathanBeebee) May 22, 2018

There has to be strategic support within the organisation and buy-in. The role cannot be an afterthought and the LDN must be involved in improving services overall as well as supporting individual cases #WeLDNs

— Joshua Kernohan (@HabitualJoshing) May 22, 2018

We need strong leadership at the top, within NMC, govt, etc unfortunately even standards are written in unLD language and more for other fields, decisions esp in England affect our future existence. Good leaders would be aware of this.

— Chris Dlamini (@chris_dlamini) May 22, 2018

QUESTION 5

Linked to support, Question 5: Is the current educational provision for learning disability nursing fit for purpose and what needs to change to enhance this? #WeLDNs

— FoNS (@FoNScharity) May 22, 2018

This is a hard question when there is such wide variation. I think more and more LDNs are working autonomously, or in isolation, and training in leadership skills, managing conflict and practice change is essential #weLDNs

— Joshua Kernohan (@HabitualJoshing) May 22, 2018

#weLDNS I think there's also a lot of misinformation being peddled not only to stn's but also about what we do teach

— Helen Laverty (@helen_laverty) May 22, 2018

As a student LD nurse/social worker I feel the course is teaching me up to date skills and knowledge which have been relevant on placement. I am also a support worker for mencap and i also have found this teaching beneficial in making changes in my work place

— Polly Allison (@_pollyallison) May 22, 2018

QUESTION 6

So we think the final two questions are really important! Here is Question 6: Programmes for educating and training future learning disability nurses are under threat – how would you articulate the importance of sustaining programmes to universities etc? #WeLDNs

— FoNS (@FoNScharity) May 22, 2018

This is tricky, but we are a vital branch of nursing and we have so many transferable skills, maybe we should be looking at supporting all people with cognitive impairment? change the model somewhat? #WeLDNs

— Sally Wilson (@salsa442) May 22, 2018

As a Mum to a daughter with a profound LD and complex health problems I cannot express how concerned I am about the future of LD nursing. Nia will need specialist LD support for further Cardiac surgery and other health challenges she faces #weLDNs

— Linda Phillips (@Llinda_P) May 22, 2018

As a #RNLD and as a parent of children with learning disabilities I think it’s imperative we secure these courses, the skills and knowledge that have made the difference to my children’s lives have come from #RNLD without which they would still be struggling #WeLDNs @WeLDnurses

— ross (@ross_6479_RNLD) May 22, 2018

QUESTION 7 asked for an elevator pitch to government and policy makers, there were some great pitches ... all shared below:

Finally, Question 7: What would your ‘elevator pitch’ to government and policy makers be about the importance of learning disability nursing? #WeLDNs

— FoNS (@FoNScharity) May 22, 2018

#WeLDNs in history our society will be judged by how well we care for our most vulnerable citizens. In a modern civilized society we need LD nurses to be the reasonable adjustment that mitigates against poor health outcomes and premature deaths

— Gwen Moulster (@GwenMoulster) May 22, 2018

This is a growing population who are living longer and enjoying life, it’s so important that access to health does not continue to be the reason this enjoyed life ends at a much earlier rate than the gen pop - Learning Disability Nurses play a role in being this change #WeLDNs

— ross (@ross_6479_RNLD) May 22, 2018

Instead of finding a solution, why so quick to cut places or course! This had been talked about before 2018 Why havent solutions been put in place previously #WeLDNs

— Amy Wixey (RNLD) (@AmyWixey) May 22, 2018

People with LD are some of the most vulnerable in society, they deserve better, equitable access to health with specialist nurses is a must! #WeLDNs

— HelloMyNameIsPaula (@paularich1977) May 22, 2018

'Just look at the #LeDeR document this just screams at the government to make change!! These deaths cannot and shall not go unnoticed! LD nurses use their specialist expertise to prevent these premature and avoidable deaths its would be a bad idea to not create more!' #WeLDNs

— LDstudentbuzz (@LDstudentbuzz) May 22, 2018

RNLDs across the lifespan. ?? RNLDs needed in children’s services, lots of work to be done around ACEs and proactive interventions. #WeLDNs

— Stacey Rees RN(LD) (@StaceyReesRNLD) May 22, 2018

we are developing a 'Learning Disability Act' to ensure people get the right support #weldns

— LD Community Nurse (@CommunityLd) May 22, 2018

With the continued push for integration for people with a LD into society and with the continued health inequalities we have seen and continue to see the need for RNLDs to be with both health and social care is so important. The are many papers and campaigns showing this #WeLDNS

— Ross Sheridan (@rsheridan2390) May 22, 2018

Stop cutting funding for university training programmes. We can't make a difference without your support! #weldns

— Becca Hammond (@BeccaHammondENU) May 22, 2018

Specialist skill set available for all healthcare settings to tackle a very particular set of healthcare issues. No specialist skills, limited response to tackle the issues.#WELDNs

— Stephanie Ross (@StephanieRossLN) May 22, 2018

People with LD are part of the electorate too. LD Nursing roles are truly holistic, and promoting political engagement amongst LD population is extremely important. We have the means and abilities to promote and support social inclusion.

— Cllr. Emma Louise Rapier (@cwtchkitten) May 23, 2018

Evidence such as mortality review and recent high profile deaths and Winterbourbe view demonstrates that change is not happening quick enough.RNLDs and disability education need to be embedded within health care education to at least attempt to minimise inequalities #WeLDNs

— Gareth Jones (@GarethJ29931527) May 22, 2018

Identify the significant inequalities that our clients face daily and support us in changing this. Our clients are living longer yet you only have to look at CIPOLD to see how common deaths. We do an amazing job, imagine how amazing we'd be with your support! #weldns

— Becca Hammond (@BeccaHammondENU) May 22, 2018

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WeLDNurses chat blog

WeLDNurses, was, is and always will be a collaborative effort; both internally and in conjunction and partnership with the community members. To reflect this we used the FoNS values clarification tool as part of recognising five years of existence to refocus where the community saw us

The reduction in Learning Disability Nurses in England over the last few years has been spoken about and explored at length, and the implications and resulting turbulence of the 2015 Spending Review has reinvigorated the discussions and narrative about the future of the profession. Media attention relating to health inequalities of people with learning disabilities only has served to place focus our minds on people dying prematurely now Based on this the opportunity to work closely with WeCommunities and FoNS on a project to develop a new narrative for learning disability nursing was welcomed.

To establish who was participating the chat we ran several polls,

Poll 1 – Participants Role

In addition to the responses provided, we also had a gentleman who has autism and is interested in the issues discussed, a joint Learning Disability Nurse and Social Work student and two family/carers who were Learning Disability Nurses.

Whilst the majority of the respondents have identified as Learning Disability nurses, it is encouraging to see that there was representatives from other health and social care professions. It is vital that we incorporate the views and needs of our colleagues, family carers and people who have a learning disability.

 Poll 2 – Participants Geographical Location

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This poll was incorporated to give an overview of the geographical location of the respondents.  The majority of the respondents were based from within England, with a percentage joining from Scotland and Wales.  It is unfortunate that there was no representation from Northern Ireland or Republic of Ireland. There was an additional respondent who noted they were tweeting from Guernsey. 

Poll 3 – Professional Location

The majority of the participants that voted in this poll identified as working within the NHS, with the next largest group identifying as within education, this would include both academics and students. A smaller proportion selected the 3^rd Sector/Charity option.  This spread helps us to see that we are collecting the views and experiences of people from a range of working environments, which is important considering the widespread location of Learning Disability Service.

Poll 4 – Learning Disability Services – Breakdown of participants working area

The results of this poll are interesting in understanding where the participants in the current workforce are situated, as we are working towards a new narrative for Learning Disability Nursing it is important for all areas to be represented.  We recognised that this wasn’t an exhaustive list of working areas and could only include four options in the poll due to twitter limits, however the poll did include representation from all options

In summary, the polls were really useful in collecting some quantitative data to support the rich qualitative and lived experience that was shared and to detail the varied experience and views of the people participating. 

Central to the project and the chat was an exploration of the idea of narratives, with various questions posed relating to whose narrative are we considering and are a plurality of narratives at play and who controlled and shaped these.

The wide variety of participants on the chat (Link to poll) from students to consultants, across the lifespan, generalist and specialists all had something to contribute to the when asked what a difference they made in primary and community care, and that surely is the first vital phase of building the individual narrative. Be it with people with learning disabilities, advocating for families, supporting GP’s, practice nurses and receptionists. These success stories, your success stories are more valuable than any box of chocolates.

The conversation moved into aggregating data, considering outcomes frameworks including the much-recommended Health Equalities Framework. These tools that we input into can be a significant help to us in sharing our worth with the world,however even they require interpretation. This sort of data interpretation linked with passionate personal testimony is a heady combination, that is difficult to ignore and can be persuasive to commissioners.

Dissemination of these powerful mixes of data and stories is so important; @WeLDNurses has always pushed for more writing from our members both across new and more traditional media. Blog posts, opinion pieces, vlogs. All can be used to share the good work of learning disabilities nurses

Like any good three-part story, it would only be proper to leave this interpretation on a positive note, the intention, methods and approach to tonight’s chat encouraged a new positive perspective for which to work, providing a whole host of data to analyse connections made and opportunities to consider, some loose end have been left hanging ready for the second part of the project coming on19^th June when we will be talking about secondary, acute hospital, physical and mental health care. Join us then.

Thank you to all who took part and shared their views and experiences