what does a LD nurse do?

Kim Woolnough explains the role of a learning disability (LD) nurse through the story of her care for one patient#

We work in schools, prisons, GP services, mental health wards, stroke wards, community learning disability teams, forensic services, nursing homes, and acute hospitals. I love LD nursing because you get to know the whole person. A learning disability is central to how that person experiences life. It’s lifelong, and varying levels of support are needed throughout. LD nursing involves creative communication, listening, and advocating for people with LD to have equal access to health and social care.

Let me tell you about Claire ¹, who I supported as a community LD Nurse. The GP referral read: ‘general health decline – unclear why’.

I knock on Claire’s door in a remote village. I hear dogs barking, and a small woman peers around the door. There are brightly painted walls, bare floorboards, and furniture is scarce. There is little food in the kitchen cupboards. Claire walks with a limp, has a marked speech impairment, but is fiercely independent. I notice six cats and three dogs that she dotes on. Claire had eight children, each of them sadly removed at birth because social services deemed her unable to care for them. Claire has no family contact. I notice her abdomen is extremely swollen and ask if she has gone to the GP.

‘I tried to explain but couldn’t – they gave me paracetamol.’ Claire struggles to find the vocabulary to express herself: ‘tummy pain, not feeling right, can’t eat’.

Claire agrees to see her GP again with me to help advocate. The GP arranges blood tests and an urgent scan. Claire can’t read appointment letters and struggles with the bus route to hospital, so I drove her. As we travel, Claire shares her life story. Her resilience, despite her vulnerability, was incredible.

Sadly, Claire was diagnosed with metastatic ovarian cancer with a multitude of complex decisions to navigate. The consultant asked for help assessing Claire’s capacity to consent to treatment. My role was to help Claire understand and make informed decisions. I acquired easy-to-read pictorial books about cancer treatment and spent extra time repeating the information. With support to weigh up the risks vs benefits, Claire decided to have surgery and chemotherapy. We rallied a team that included a social care package to enable Claire to continue living at home with her beloved dogs. A deep clean and regular check-in calls were made to reduce the neutropenia risk.

Sadly, Claire deteriorated despite the chemo and was admitted to hospital. A scan revealed new brain metastases. The Doctors discussed putting a ‘do not attempt cardiopulmonary resuscitation’ request in her notes, but Claire looked bewildered and remarked, ‘is that what I saw on telly where they jump on your chest?’. We used simple language to help Claire understand and reduce her distress.

I then liaised with all the teams involved with her care to coordinate a safe discharge that upheld Claire’s wishes. Claire agreed to a local hospice on the condition that I bring her dogs to visit. We found a local animal shelter to take them, and I took the lively Jack Russels to visit Claire, their muddy paw prints on the crisp white sheets.

Claire passed away peacefully a few days ater. Some hospice staff reflected that the experience of caring for someone with a learning disability had a profound impact on them, as it had me.

Kim Woolnough is a LD nurse working in Oxford