Engagement Fails Without Carer Care
It was a beautiful spring summer day. Almost warm enough to wear a t-shirt, but when you weren’t in the sun, the shade and the breeze still had that bite to it that called for a jumper. The air was sweet with the fragrances from the lawns that were being mown for the first time that season, and the blossom that had just finished falling. The birds had started to return for the summer and the air was thick with their song. Everything about this day was beautiful, accept it wasn’t.
I was sat having a cup of tea with someone I really care about, and that person was preparing me, in the same way their specialist had prepared them: to receive a diagnosis of terminal cancer, and I don’t remember much more about that day other than the feeling of my world closing in. My insides were now on the outside. I could no longer hear the birds, just a loud thrumming in my own head, my limbs had gone numb and tingly. I couldn’t even hear the rest of the conversation.
Was I ready to step up to this again? Did I have a choice? 9 months before this conversation I had held my great aunts hand, alone in her house as she was screaming her fear of death whilst standing on the precipice? 3 months before that, I had lain in the hospital bed with my Gran for her final moments. A slightly more muted affair, but the end of caring for one of the most significant people in my life. Only it never ends.
You see, for carers, it is a way of life – and I hate the term carer, because for any one who has been one (and I think we all will be at one stage), you know it’s so much more than ‘caring’. From the diagnosis to the end, being there for someone becomes a labour of love, a passion, a focus and an all-consuming way of life. Your love for that person becomes tested, deeper, and more meaningful than ever before, but despite it being arguably THE most important relationship that the patient has, it’s one of the loneliest roles someone can take on, and one that is grossly
Caring for Carers
Whilst the focus is (rightly) on the patient throughout the process of diagnosis, treatment, recovery/palliative care, carers are often suffering in silence. Battling with feelings of guilt, inadequacy, depression, isolation and loneliness.
As a direct result of their caring role, carers have been shown to experience higher rates of mental ill health than the general population1, and as the condition of the person they are caring for changes, so do the demands on the carer, and as a result their needs too.
It’s natural for someone to ask how the patient is doing, but rarely does anyone enquire as to the health or well-being of the carer and the unspoken burden that the carer shoulders is enormous.
Carers are providing almost 24 hour psychological support to the patient with no training or expertise, just love, and this is not always the best place for therapy to coming from! Carers are also experiencing the same highs and lows as the patients, but unlike the patient, the carer is often isolated and alone with no one to share their feelings, talk to about treatment regimens, prognosis, care of the patient or how they are feeling whilst still going to work, supporting the family and functioning with every day tasks etc.
Despite carers being proven to be the strongest motivator and driver for the patient, we are only really just beginning to acknowledge and address their needs in the support and engagement programmes being developed.
What can be done?
Some companies already recognise the power of the carer in interventional care and are creating hardware and technologies to link the patient and the carer together. For example, SmartMonitor offer an application that links to wearable devices using the biometric sensors to spot when someone may be having a seizure. It notifies the designated family members or carers of the date, time, location and duration of the seizure so that they can intervene and get help. These solutions are fantastic in bringing the carer closer in to the monitoring and care of the patient but they still don’t acknowledge the support and emotional needs of the carer.
We need to give carers the information, tools and services to support themselves as well as the patient.
Evidence consistently shows that for patients to get the very best care, we need to ensure that the whole healthcare team are recognised and supported. Not just the HCPs and patients, but the carers too.
As part of any patient care/engagement programme being developed and offered to patients, the carer should be an integral and considered user of that programme. A deep understanding of the progressive needs of the carer should be considered throughout the service and design of the programme, and their needs catered for on an equal weighting to those of the patient.
Recognition needs to be given to the importance of the carers upfront, and resources offered via point of care in the same way we do with patient support tools: from the very beginning.
Ultimately the more supported the carer is in their journey with the patient, the more engaged the patient will be in their healthcare throughout. Getting through a serious diagnosis is a team effort, it’s about time all team members are equally supported.
So, what happened?
Well, the person I opened this article with is still alive and very well.
A week after this conversation (a week filled with personal bargaining and promising all sorts with the invisible) they received an all clear. The specialist didn’t understand it, still doesn’t, but the main thing is it was an all clear with annual check ups to ensure it remains this way, but I know if I needed to step up again, without question I would.
With the ever evolving and progressive nature of support tools, I am also hopeful that when the time comes to step up again, I will not only be more experienced but also, alongside the patient: be better supported.