The StN Project

Improving education and fighting stigma around Down’s Syndrome

I feel so lucky to have grown up with a sibling with Down’s Syndrome. Growing up with – and at some points caring for – my older sister, Mary, has given me some of the most joyful memories of my childhood and some of the most valuable lessons as a student nurse.

My sister has lived in an assisted living community for over ten years, which maximises her independence and sense of identity. Seeing how happy she is now makes it hard – and indeed painful – to recall how people with Down’s Syndrome used to be treated. Although we have a long way to go, mainstream media is getting better at shedding light on these issues. A memorable episode of ‘Call the Midwife’, featuring fantastic actor Daniel Laurie, showed unsettling images of the institutions that were widely used to keep people with a variety of disabilities separate from society. Thankfully, Daniel’s character, Reggie, finishes the episode in a beautiful residential community in the countryside. It is important to remember, however, that up until recently these places came few and far between.

Although stigma is gradually being diminished, it still survives. I think this is largely due to a woeful lack of education, for both students and qualified nurses. Charities like Mencap and the DSA, among many admirable others, work tirelessly to educate the public on these issues. Mencap, for example, provide useful definitions as well as moving and inspirational personal stories. Despite this – as a relative of someone with Down’s and a nursing student – I see that the familiar, sad phrases persist:

“Can they really have jobs?”
“Can they get married and live alone? Is that safe?”
“They must have such a low quality of life.”

Even other health care professionals make mistakes. For example, in practice I still see people confusing ‘learning disability’ and ‘learning difficulty’ at handover. As students we need to act as advocates – educate ourselves on these issues and have the courage to correct mistakes. HCP’s also have a tendency to use words which – though I’m sure the majority of the time do not come from a place of prejudice – cultivate this systemic perception of Down’s Syndrome as an automatic indicator for poor quality of life. Words like “risk” or “danger” can make parents feel terrified of having a child with Down’s Syndrome. So much so that Sarah Roberts started a blog last year called “Don’t be sorry” after her experience of being told that her son, Oscar, had Down’s Syndrome. Her writing aims to diminish prejudices and misconceptions of Down’s Syndrome – something I think we should be doing, whether students or qualified.

One important thing to teach people is that not everyone with Down’s Syndrome is the same. This may sound obvious, but I have seen first-hand HCP’s immediately associating Down’s Syndrome – albeit with a total absence of malice, just out of a lack of training – with a stock set of characteristics: “difficult”, “unable to communicate” and “infantile” to name a few. My sister does not communicate verbally and experiences physical impairments. However, this is not the global experience! A huge proportion of people with Down’s Syndrome work and live independently. The key is to approach each person individually, meet their needs on a personal basis and make reasonable adjustments accordingly.

I personally don’t feel we’ve had enough training on reasonable adjustments, despite the fact it is a legal requirement (Equality Act, 2010.) I have, as a student, witnessed nurses using their compassion and initiative to make appropriate adjustments for patients with learning disabilities. However, unless this is drilled into staff across the board we cannot guarantee the highest possible quality of care for people who need these adjustments.

Lydia, one of the LD student nurses on our team, has reminded me of the key role and responsibility of RNLD’s in our NHS. For those training as learning disability nurses, ways in which we can make reasonable adjustments and promote social inclusion are key focal points of our training. Making information accessible to ensure people with a learning disability can be empowered to be involved in decisions surrounding their own health is fundamental to the role of learning disability nurses. It is so important that RNLD’s are leaders in educating and influencing other health care professionals. There are plenty of reasonable adjustments that could be made to improve access to services, for example the use of Easy Read information and ensuring longer GP appointments to name a few. Reports such as ‘Death by Indifference:74 Deaths and Counting’ (Mencap, 2012) highlight the tragic avoidable deaths of people with a learning disability. Taking the time to think about how care can be adapted and delivered in a flexible manner can help to reduce the number of health inequalities faced by people with a learning disability.

As well as education, we can look to the inspiring people with Down’s Syndrome in the public eye who help to fight stigma every day. Maija Mattila has made the headlines recently for her success as a model in Finland. John Cronin started his own sock making business called “John’s Crazy Socks” which has made over $1m in revenue and has sent $30, 000 to charity. Kathleen Humberstone, at only 17 years old, has addressed the UN in Geneva to call for more equality as part of the #MyVoiceMyCommunity campaign.

NHS Improvement’s report “Building the Right support” is due for review this year. Hopefully it will shed more light on the gaps in our health care system and the education of HCP’s. But on top of that I think that students not training to be LD nurses need to call for more training. If we are going to achieve all the goals on the Mencap charter when we qualify, we need the skills and the resources to provide the best care we can for people with Down’s Syndrome.

While we wait for this vital training, there are things you can do on your placement. Macmillan provides free Easy Read material booklets on various health related topics. Order these and give them to your Ward Manager. Educate yourself on the MCA and become an advocate in every setting you encounter. Show your mentors and their colleagues the educational pages on the Mencap website. Ask to spend the day with a learning disability liason nurse or member of the community learning disabilities team. If a patient with Down’s Syndrome is admitted, make sure that reasonable adjustments have been made. We can make that vital difference!

(Lily Parham & Lydia Marsden – student nurses)

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