This piece is written in the hope that those who read it realise that a person’s level of ability is not a stable measure but rather varies drastically in different environments. We must consider the context when we assess, plan and deliver care.
My first example is my 17-year-old brother, Charlie. He is articulate, tall, chatty, incredibly kind and very handsome. He has autism, learning disabilities, and hypotonia that require orthopaedic splints, and very occasionally, the use of a wheelchair.
My neighbour, an older woman, is my second example. She lives independently with no family or support nearby and she cooks and cleans for herself. She suffers from epilepsy, is undergoing major medication changes and I suspect is in the early stages of dementia.
Charlie is disabled in the community and able in the home. He still has autism, learning disabilities and hypotonia wherever he goes, but they affect him very differently. At home he is developing learned responses to his environment. He has routines, built by his family, to enable him to largely take care of himself; he knows what comes next and how to converse with us, and how to meet his own needs. Charlie is able in social situations and environments that are familiar to him – drama, school and work experience, all of which he has been attending for years. However, remove Charlie from familiar surroundings and you quickly realise how significantly his autism and learning disabilities impact him, how different he is from other 17-year-olds and how much he struggles to adjust. On a recent trip to London a family member said he didn’t realise how disabled Charlie is. Well, why would he? He has mostly seen Charlie at home and in our home he is only as unusual as the rest of us.
My neighbour is able in the community and disabled in her home. She visited and confided in me that she had a seizure a few days earlier and remembered nothing since. We started discussing her new medication and it became clear she had no idea what she was taking, when and why, and was experiencing symptoms that were a cause for concern. After a worrying discussion I asked her to show me her medication, and I have never been more horrified. It was clear she was regularly overdosing and on occasion taking no dose at all. She was losing track of time, missing meals and appointments. I went to her next appointment with her and swiftly realised why she didn’t have the support she desperately needed: she nodded yes and no at appropriate times, ignored the voice inside her that trembled with worry, and pretended she was okay. It was only when I raised my concerns that her doctor realised what had been happening. My neighbour knew she needed support, and desperately wanted it, but she had been pretending to cope for so long it was just habit.
Context is everything with our patients and service users, just like it is with nurses, even though we may not be aware how much it impacts us. Where we can we should make the environment meet the needs of the patients, but when we can’t we must adjust our expectations of patients and service users to account for the fact this is not ordinary for them - and that it is certainly not easy.
Lucy Cleden-Radford is Student Nursing Times’ learning disability branch student editor