Caring for carers

Helen Walker is Chief Executive of Carers UK, Member, NHS Assembly

Clare Gerada is  Co-Chair, NHS Assembly and President of the RCGP, She is on Twitter: @ClareGerada

Caring for carers is everyone’s business, though general practitioners (and we use our words wisely) are perhaps best placed to identify and support carers -more so than other health professionals.

The latest census¹ shows the percentage of older women (85-89) providing unpaid care has increased from 5.9% in 2011 to 6.3% in 2021 and women aged between 75 and 79 years, and men between 85 and 89 years, have the highest percentage of individuals providing 50 hours or more of care compared to other age groups. But it is not just the elderly who are carers. Approximately 12,000 individuals per day become carers for those who are ill, disabled, or elderly and in need of assistance.² In England alone, this translates to 4.7 million carers. If these carers were to be paid for their services, even at minimum wage, it would amount to £152 billion annually – equivalent to the National Health Service budget. Without carers input the health and care system both would fall over.

Carers come predominately from those who care in their professional role: one in three NHS workers is also an unpaid carer compared to one in seven across the general population. As recruitment and retention pose significant challenges across various sectors, non-more so than in the health and care sector it is vital that we acknowledge these dual roles of those who work in a caring role and care for those close to them. With respect to the latter role, 600 individuals leave their jobs every day to take on caregiving responsibilities, unable to manage both aspects of their lives.

Carers can become patients and in so doing are more likely to experience health inequalities themselves. The GP Patient Survey^3,4 provides evidence for these disparities and serves as one of the few sources of data on unpaid carers. When a carer becomes unable to fulfil their role due to illness, it puts an additional burden on the NHS and social care systems to provide support for both the carer and the person they care for. By supporting carers, the NHS can avoid such breakdowns. The business case for prioritising support for carers is therefore obvious, though this is rarely done. Currently, one-third of carers wait more than a year for their own treatment, impacting on their ability to provide safe and effective care.

While prioritising carers’ treatment may not always be feasible, the NHS can enhance support within its own systems. This includes asking patients if they are carers and inquiring about the challenges they face. We need to use carers better. They possess valuable insights into the well-being of the individuals they care for, making their input essential. Ideally the NHS should focus on supporting its own staff members who are carers, ensuring they can balance their work and caregiving responsibilities effectively. In addition to the ethical reasons for supporting carers, there is also a strong business case to be made. Initiatives like paid carer’s leave can contribute to reducing sick leave, improving staff retention, and enhancing overall loyalty. For example, the company Centrica⁵ offers 10 days paid care leave for their 31,000 employees with an estimated annual saving of £3.1 million per year. These figures demonstrate the financial advantages of supporting carers in the workplace.

A positive development in supporting carers has been achieved through parliamentary success with Carers Leave. Starting (hopefully) in 2024, five days of unpaid carer’s leave will become a legal entitlement, marking an important step forward. However, maybe the NHS should surpass this milestone and position the NHS as a leading employer for unpaid carers by implementing paid carer’s leave. This would demonstrate a strong commitment to supporting carers. Even this would not go far enough. Carers UK are calling for carers leads in every major health setting. These individuals would play a crucial role in recognising, supporting, and valuing carers, creating an environment where carers feel appreciated and respected for their vital contributions. By fostering such an atmosphere, employers can cultivate a reciprocal sense of value from carers, leading to increased job satisfaction and loyalty.

An ambition for carers and the NHS would encompass the following goals:

• To have the most carer-friendly health service in the world, providing comprehensive support and services for carers of all ages, including young carers. This would involve tailored programs, resources, and initiatives that address the unique needs and challenges faced by carers.
• To become the most carer-friendly health employer globally, setting a standard for other organisations to follow. This would involve implementing robust policies and practices that support and accommodate the needs of carers within the NHS workforce, including flexible working arrangements, paid carer’s leave, and access to caregiver support programmes.
• To ensure that carers never feel alone and are consistently recognized, valued, and supported by the NHS. This would involve creating a culture of empathy, understanding, and appreciation for the vital role that carers play in the lives of those they care for and care about. The NHS would actively communicate the message that they stand with carers and are dedicated to their well-being.

Success would be marked by the seamless integration of support for unpaid carers throughout the NHS, and clear practical delivery mechanisms to ensure that support for carers is embedded within every level of the healthcare system. Effort now needs to be made to ensure that everyone involved works together towards achieving the shared vision for change, pooling resources, expertise, and advocacy to make significant progress in supporting carers within the NHS. This must become all our business.

References: 

1. Office for National Statistics 2023 Figure 7,
   https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/socialcare/articles/unpaidcarebyagesexanddeprivationenglandandwales/census2021
2. Petrillo, M., Bennett, M.R., and Pryce, G. (2022). Cycles of caring: transitions in and out of unpaid care. London: Carers UK. https://www.carersuk.org/media/bgolg5u2/cuk-carers-rights-day-research-report-2022-web.pdf
3. GP Patient Survey (link to results tool https://www.gp-patient.co.uk/surveysandreports:
4. Carers UK report here on carers’ health inequalities and diversity groups (GP Patient Survey 2021): https://www.carersuk.org/briefings/policy-briefing-gp-patient-survey-2021/
5. Centrica: https://www.centrica.com/media-centre/news/2019/centrica-encourages-government-action-on-paid-carers-leave/ or https://www.carersuk.org/for-professionals/support-for-employers/employers-for–carers/business-case/

Featured photo by National Cancer Institute on Unsplash