On the centenary of the establishment of the profession, a student learning disabilities nurse explains the crucial daily work they do.
My chosen profession, learning disability nursing, was established as a practice 100 years ago this year – although there have been several threats to the specialised role over the years. As I’m about to graduate, I want to offer a glimpse into the type of work that we do, and why it remains important, with the following account of my experiences.
Overall, working with people with different types of learning disability and across healthcare settings, our values are based on independence, inclusion and accessibility. We seek to practice in a way that enables people to put their own wishes, goals and ambitions before their obstacles. All this is important to meeting the health needs of this population.
In the following accounts all names and identifying information have been changed.
People with learning disabilities often have unmet health needs, and experience worse health than those without, so they are offered annual health checks with their GP. Sadly uptake is frequently low, with often the simplest of reasons standing in the way. One example was a GP surgery sending individuals invitations they may not have been able to easily understand. To remedy this, embracing my creative side was in order! Here, I set about creating an easy-read invitation letter that the GP surgery could use, incorporating colourful images and short descriptions (no jargon!) of what to expect during an annual health check. A simple task – yet without accessible information, individuals can be set up to fall at the first hurdle.
Lindsay, a child with Down syndrome, is off to have her adenoids removed in surgery today. Part of my role today includes advocating for Lindsay’s right to have reasonable adjustments implemented by the children’s hospital. Examples include providing Lindsay her own room (to manage anxieties around new people), inserting her intravenous cannula into her foot instead of her hand (to avoid her pulling it out), and providing visual cues guiding her through what to expect for the day. Importantly, I make sure staff adhere to her ‘hospital passport’ – a document providing vital information to enable hospital staff to understand her wishes and needs.
Today Craig, an individual with mild learning disabilities and autism, left the ‘assessment and treatment unit’, which is a secure placement. Frustratingly, despite government initiatives to ensure people with learning disabilities are not stuck in these placements long-term, Craig spent two years there. However, he made some immense progress during his stay. Due to his sensory differences, washing and grooming have historically been uncomfortable experiences for Craig, leading to him to avoid these tasks and then develop physical health conditions.
To support Craig’s self-care, systematic desensitisation (AKA gradual exposure), was utilised. An example of this in practice involved Craig being supported to first have a bottle of shaving cream in the bathroom, before exploring its smell, look and texture. He eventually worked up to applying small amounts to his face, before finally using it to shave with. Seeing Craig leave with a clean presentation and donning a big smile has been such a triumph for the team.
Charlie, a young man with Down syndrome, recently took the plunge into independent community living. Unfortunately, his move has coincided with considerable weight gain, following the transition from living with his mum, where food restrictions were in place. Today I participated in assessing Charlie’s capacity, in line with the Mental Capacity Act, around managing his food choices. To do this we utilised the communication tool Talking Mats, using images of differing portion sizes and healthy versus unhealthy foods. This allowed us to determine Charlie’s capacity in this specific area, so as to work out the input he’ll require from the nursing team.
Joining a learning disability hospital liaison nurse, today I attended a multidisciplinary meeting regarding Jenny, a lady with mild learning disabilities. Jenny attended the meeting with her support worker, who explained that Jenny has been behaving significantly out of character and her concerns that Jenny was experiencing a deterioration in her mental health. The consultant doctor immediately dismissed this, saying: “this is how people with learning disabilities act, nothing to worry about”.
I learned afterwards that this was a case of ‘diagnostic overshadowing’, whereby the doctor assumed Jenny’s behaviour was attributed to her disability, without considering other physical, mental or social factors. The hospital liaison nurse and psychiatrist questioned the consultant and, as it turned out, Jenny was experiencing an acute psychotic episode. Too often diagnostic overshadowing occurs, leading to health issues remaining untreated, which can be serious and increase the risk of fatality. Observing the part played by the hospital liaison nurse really brought home to me just how vital the role is in ensuring people with learning disabilities get their basic health needs met.
This diary is a montage of experiences.
Correction: In an earlier version of this article, this role was mistakenly called ‘learning difficulties nurse’. While learning disabilities nurses support people with some learning difficulties too, there isn’t a separate nursing role for people with learning difficulties.