Caring can be daunting and testing, but it can also be illuminating and inspiring. In our recent white paper campaign, In Search of the Invisible Army, we talked to carers about the skills and attributes they gained from their caring experiences. An unparalleled first-hand perspective of healthcare systems treatment regimes was commonly combined with a sense of empathy and a desire to help others. Such qualities can make carers a huge river of positive change within healthcare. In this blog, we take a look at three carers who’ve drawn upon their personal experiences to help improve healthcare for all.
Beth spent many years caring for her father, who had vascular dementia for the last 19 years of his life. She reflects fondly on her time looking after him, and glad to have been able to have so much quality time together. The care and attention she gave to her father enabled Beth to come up with solutions to issues that healthcare professionals had never thought of, such as blending together fruit smoothies to make sure her dad got enough nutrients once swallowing had become difficult for him. Beth’s eye for personalised care and ability to problem solve has led her to become a renowned campaigner and consultant within the field of dementia care. She is the author of a hugely successful blog, D for Dementia, and regularly consults for the NHS and the Care Quality Commission.
“I find that staff on the front line need to understand how to problem solve, how to identify issues before they become too out of control, and how to intervene in a really person-centred way that focuses on the individual and their needs. I think that’s something that comes naturally to you when you’re been a carer because you have focused on that one person and that one person’s needs.”
Nabeela Jaffer watched her son, Salman, struggle to communicate for years. He’s 20 now, but was diagnosed with autism aged 4. She noted that whilst his receptive language was good, he had particular issues with his expressive language. Moreover, like many youngsters, he loved playing games on his iPod. So, as a computer programmer, Nabeela sought to use her son’s passion for gameplay to solve as a means to help him connect with other people. And so she created the My Words app.
With the app, you can type in a word, take a photo of something representative of it, record your voice saying the word, or a phrase, and place it in a category. For example, if an autistic, or speech impaired individual uses a particular object frequently, a caregiver can help them communicate their need for it through the app by simply typing in the object’s name, taking a photo of the object, record their voice pronouncing the name of it, and then storing it in a category on the app. When the individual needs to use it, they can simply tap the photo, and the recording will come up. What distinguishes it from apps that are similar to it is that the set of words and phrases on the app can actually be shared publicly, for teachers or others to access, making it simple for the individual to communicate anywhere.
Today, the app is helping more than just autistic and speech impaired people, it’s being used as a language learning tool.
Kenneth’s son is epileptic and has been hospitalised on a number of occasions following severe seizures. Kenneth searched the market for a portable seizure detection device, but to no avail. Determined that his son should lead an independent life whilst still being closely monitored (and therefore protected), he developed the smartphone app Epdetect. The app differentiates the movements associated with epilepsy from normal movement. When a seizure is detected it warns the person that it is about to send an SMS message to a carer, in the case of a false alarm the person will be able to cancel the SMS alert.
You can hear more about Beth Britton and her experiences looking after her father in her interview with Matt Eagles.