Our thoughts on neurodisability nursing

From Chloe’s point of view, she has considered this issue since working as an Acute Liaison Nurse. In December of 2017, she discussed with her line manager the need to include autism in her title, which was agreed and she became a Learning Disabilities and Autism Lead Nurse. This was done in the spirit of inclusion, as it was known that autistic people did not engage well with the mental health liaison services. The communication and holistic style of the learning disability nurse are more effective in minimising the associated health inequalities, and general successful engagement to ensure better outcome for patients. 

Sarah felt that the time for a change is now. The transferable nature of the nursing and healthcare education they’ve received, combined with the experiences they have acquired, felt relatively unseen when using ‘earning disability nurse as a title, and would a change make this any better? She felt that her own personal skillsets could offer more to a broader clinical and research context. With almost 40 years combined experiences, she feels that their clinical expertise, aside from leadership skills, is centred around ‘The Limbic System’, a switch to neurodisability nursing fits well. 

Additionally, Sarah thinks that many have consistently kept practices contemporary and have not only had to pioneer, drive, influence and rework services, but had to carve out new practices to create a vision for not only our future professional identity but for improvements and changes within health and social care. It’s time to validate those that have done right and who will be passed the future gauntlets and reigns. 

Previously, Chloe worked with people described as having a neurodisability, which includes autism, cerebral palsy, epilepsy, ADHD and motor neurone disease. Then, in her liaison role she had established a working group across multiple boroughs and this steered and shaped the way the Liaison Service operated. The group comprised of people with lived experiences (learning disabilities and neurodiversity), their families/carers, advocacy groups, hospital professionals, local authority and the then CCGs. When she presented her vision, the need to support those with neurodiversity, with and without learning disabilities, was unanimously agreed. This however, only applied in the hospital setting as the specialist community teams had strict criteria for their finite resources. 

She recalls true collaboration with partnership and co-production which resulted in revision and production of hospital policies, pathways, and documentation to reflect that inclusivity. They redesigned the hospital passport to a Health Passport for all who needed extra support. This is not to say they started viewing everyone as having a learning disability but included everyone who might need support when accessing services and it mirrored how those with autistic spectrum conditions were better supported by the learning disability liaison’s approach in terms of their communication needs. She speaks of a systematic way to drive change.

Sarah believes reimagining of clinical pathways, teams and alternative care types is needed nationwide. The gaps in care provision are known and the reasons are anecdotally understood. The populations needs have changed. Namely a 15% neurodiversity diagnosis rate has been quoted in a paper written by Plymouth University. She hinted on an increase in people being cared for in the community with increasing complexity with an ask for early help and prevention across all strategic agendas. Embedding those humanistic, empathy led values to improve the quality of both health and social care is in the gift of our profession’s core professional identity. Yet, without the right planning, leadership and resourcing we have missed opportunities. Our profession has very passionate people with vision. We need to act on this change or the low numbers on current university courses may be the last.

Chloe recalled that as a newly qualified RNLD she realised the need to upskill. She learnt how to cannulate, take bloods, transfuse, catheterise while working on a surgical ward. By the time she became an Acute Liaison Nurse she had all the skills that she needed to support both her patients and colleagues. These skills helped her to work with both cohorts of her patients who understood that she didn’t just represent those with a learning disability but those with neurodiversity too. When she looks back she had already been working as a Neurodisability Nurse. Her skills ensured that she had a voice and a seat at the table to advocate for her patients, whether they had a learning disability or a neurodisability, on an even playing field. She set a standard and gained respect in an acute hospital setting.

In wrapping up Chloe and Sarah finished with thoughts around new service types, new models and the excitement it would bring to fuel them both.