While the role of a carer is often deeply rewarding, offering a sense of purpose and fulfilment, it also comes with expanding responsibilities that create significant challenges.
Administrative burden of being a carer
One major difficulty is coordinating complex health and social care appointments. Carers often need to schedule and manage multiple appointments with various health and care providers, including GPs, clinical specialists, physical therapists and mental health professionals. This can be particularly daunting when the care recipient has multiple chronic conditions requiring frequent and specialised attention.
Additionally, carers often need to navigate different health and care systems and providers, each with their own set of procedures, appointment booking systems and paperwork requirements. These systems rarely talk to each other - often requiring carers to repeat information multiple times. Coordination is further complicated by the need for carers to arrange transport, especially if the carer does not drive or the care recipient needs special accommodations, such as wheelchair-accessible vehicles.
The administrative burden for carers also includes managing medication schedules, ensuring prescriptions are filled and up-to-date, and understanding the side effects and interactions of multiple medications. Carers are regularly required to track and administer a daily regimen of medications at specific times, coordinate with pharmacies for refills and communicate with health and care providers about any issues or side effects.
Balancing responsibilities with personal needs
Balancing these responsibilities with personal needs and other family or work commitments often leads to significant emotional and physical strain. Financial pressure often builds over time, as carers may have to reduce their working hours or leave their jobs entirely to fulfil their caregiving duties, leading to a loss of income and financial instability.
Often, it becomes difficult to balance the role as a carer and their own needs. Many carers struggle to find time for their own health and wellbeing needs such as medical appointments, social activities, or respite, resulting in varying levels of frustration and burnout.
Barriers to accessing support
Carers spoke of difficulty accessing crucial information about their rights and entitlements and the lack of support such as respite care, meeting places and peer-support groups.
Additionally, Black and ethnic minority carers find that services are not well-prepared to meet diverse linguistic needs, cultural practices, and dietary preferences, resulting in mistrust and a reluctance to engage with these services. Moreover, language barriers can exacerbate these challenges. Poor communication can lead to misunderstandings, missed appointments and inadequate care. The need for interpretation services for some carers adds another layer of complexity, as these services are not always readily available or may not be of high quality. Moreover, navigating multiple social identities—such as ethnicity, language spoken, immigration status and cultural norms—further complicates access to necessary support.
