By Niall Dew, Head of Practice Education for the Department of Health Sciences, University of Huddersfield will be leading this week’s ENB twitter chat on Wednesday the 15th of April between 8-9pm UK time focusing on ‘the impact of learning disability nurse education on patent care.’ Participating in the twitter chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward – follow the discussion by searching links to #ebnjc or @EBNursingBMJ, or better still, create a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ and add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

I feel the need to start by saying that although some of my comments might be perceived as negative, I wholeheartedly believe that learning disability nurse education is not only essential but has a positive impact on the lives of people with a learning disability. Perhaps, as a learning disability nurse, you might expect me to say that but I have seen the impact of lack of understanding from individuals, organisations, and countries where people with learning disabilities are ‘at best’ ignored and at worst mistreated, even die because of ignorance about their specific needs.  Having read with interest the recent report by the Learning and Intellectual Disability Nursing Academic Network (LIDNAN) and the UK Council of Deans of Health, these documents unfortunately just re-affirm an ‘old story’ and more importantly highlight that despite the interventions of professionals, private, voluntary and charitable organisations we still live in a society that, to all intents and purposes, still fails to acknowledge the status of people with a learning disability. I noted yet another Department of Health consultation has begun on improving the rights of people with learning disabilities this time with those with autism and mental health conditions.  Despite reports and consultations, my over thirty plus years varied and diverse experiences, since commencing as a student nurse at Lennox Castle Hospital in Scotland, the consistent themes and questions remain the same: have experienced are:

What is a learning disability?

What skills do you need to look after someone with a learning disability?

Who is best placed to look after the needs of people with a learning disability?

What should a learning disability nurse do?

People I talk to, both socially and as part of my work, still struggle to define what a learning disability is and often get it confused with mental health, educational underachievement, special educational needs and low IQ. Without regurgitating the many to text book definitions I often have to refer to a commonly understood group of people who may have a range of learning disabilities, people with  Down Syndrome; this doesn’t sit easily with me. People who do know about learning disability often have some personal experience either through contact with a family member or someone with a learning disability. Even with this knowledge I am still surprised to meet people who, for example have a relative with autism, tell me that their child or sibling with autism has a learning disability because this is clearly the only diagnosis they have been given.

I have to take some responsibility here and it certainly makes me question the impact that I have had as a lecturer who teaches learning disability students and maintain that everything I have done since beginning my training, 30 years ago, is ultimately to improve the lives of people with learning disabilities. So why, despite the best efforts of dedicated nurses who specialise in the care of people with learning disability, is their quality of life still lagging behind the rest of similar populations?

 Does this actually matter?

Yes I think it does. Learning disability is a complex set of factors that impact on a person’s social, emotional, physical, psychological and spiritual well being. Simplifying the needs of people with learning disability is not constructive and indeed report after report has shown that misunderstanding learning disabilities causes deaths. 

During the twitter chat I thought it might be useful to try to explore some of the reasons why learning disability as a subject remains something that remains misunderstood, underrepresented or at worse omitted from nurse education. Specifically I hope the debate can consider the following questions: 

Why does nursing sometimes fail to adequately care for people with learning disabilities in their care? 

Why is learning disabilities still misunderstood in contrast to the understanding of mental health, Alzheimer’s, autism, heart disease and cancer……?

Links

LIDNAN and Council of Deans Report http://www.councilofdeans.org.uk/wp-content/uploads/2015/01/LD-Nursing-report-Jan-15-Final.pdf

DH Consultation of People with Learning Disabilities https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/409816/Document.pdf

Death by indifference https://www.mencap.org.uk/sites/default/files/documents/Death%20by%20Indifference%20-%2074%20Deaths%20and%20counting.pdf