There has been more recognition of our unpaid carers over the last few weeks since the Labour budget announcement increasing the weekly earning threshold for Carer’s Allowance and more recognition for the role they play in the wider Health and Social Care sector. These are great steps, however there is still much more government and local authorities could do and I wanted to use my voice to raise further awareness of some of the daily struggles faced by unpaid carers.

What is an unpaid carer?

Before we begin raising awareness, we need to firstly ensure people know what an unpaid carer is. An unpaid carer is someone who provides care for a friend, family member, or neighbour without being paid by a company or local authority. Unpaid carers can provide a variety of care, including help with everyday tasks, personal care and emotional support. 

The most recent Census 2021 puts the estimated number of unpaid carers at 5 million in England and Wales. This, together with ONS Census data for Scotland and Northern Ireland, suggests that the number of unpaid carers across the UK is 5.8 million, however, Carers UK research in 2022 estimates the number of unpaid carers could be as high as 10.6 million (Carers UK, Carers Week 2022 research report).

Unpaid carers in England and Wales contribute an estimated £162 billion per year to the economy, which is the equivalent to a second NHS and make up 9%-12% of the population.

Fragmented Systems

One of the main challenges unpaid carers face is navigating the fragmented systems of health and social care. Most of us working within the sector find it difficult to navigate, so I think we can all relate to this struggle but check in the acronyms we commonly use like CHC (Continuing Healthcare) and DoLS (Deprivation of Liberty Safeguards) lead to further confusion without proper guidance.

CHC refers to a package of care arranged and funded by the NHS/Local Authority for individuals with significant ongoing healthcare needs. DoLS, on the other hand, are legal safeguards to protect individuals who lack the capacity to consent to their care arrangements, ensuring they are not deprived of their liberty without due process.

Alongside the fragmented system and navigated the acronyms, unpaid carers are often left without a dedicated social worker or a clear point of contact, which leaves them lost in a maze of bureaucracy and having to decipher processes on their own, which can be incredibly daunting and stressful.

For more detailed information on navigating these systems, carers can refer to resources provided by Carers UK.

Finances and Funding

Financial concerns are a significant source of anxiety for unpaid carers. Questions around funding, top-up fees and the fear of not being able to pay for necessary care are daily concerns for unpaid carers. The financial strain is compounded by the fact that many carers have to reduce their working hours or leave their jobs entirely to provide care, leading to a loss of income and additional concerns and stress.

Top-up fees, which are additional charges for care services not covered by standard funding, can be particularly burdensome. Carers often struggle to make ends meet, with the sums not adding up and the constant worry of financial instability looming over them. This financial pressure can lead to difficult decisions, such as choosing between paying for care or other essential expenses.

The Labour Budget saw weekly earning thresholds for Carer’s Allowance rise by £45 to £196, however research suggests that unpaid carers in the UK will still face a monthly shortfall of around £212, or £2,551 annually. This is due to the average cost of care increasing by 8% in the last year, while the weekly Carer’s Allowance rate has only increased by 6%. 

Carers can explore their rights and potential financial support through the Care Act 2014, which provides a legal basis for their entitlements.

Postcode Lottery Care

Many unpaid carers have spoken about the care services around them, but also the impact of when carers do not turn up or the care provider folders/hands back their care. The reliability of external carers a critical issue, and often results in the unpaid carer having to pick up the pieces and manage alone. This inconsistency in support can disrupt the routine and wellbeing of both the carer and the person receiving care.

The lack of dependable support means that unpaid carers are always on high alert, unable to plan their days or take a much-needed break. This constant state of readiness can lead to burnout, as carers are unable to rest or recharge.

Isolation and Lack of Family Support

Isolation is another issue among unpaid carers. Many carers report a lack of immediate family support, which can lead to feelings of loneliness and abandonment. The demands of providing care and support often mean that the unpaid carer has little time for social activities or personal interests, further increasing their sense of isolation. This emotional toll can often lead to feelings of being trapped in their role, unable to go out and in many cases, take time for themselves which manifests and results in mental health issues such as depression, anxiety and burnout.

Support networks and resources offer valuable assistance and community connections and it is imperative that local authorities and Integrated Care Boards fund these provisions. If you are an unpaid carer, be sure to make contact with your local authority’s adult social care department who will be able to sign post you to services, but also utilise online networks.

Home Care vs Care Homes

In recent years, there has been a noticeable shift in the way care is provided, with a push for people to stay in their own homes, living longer due to medical advancements and developing much more complex needs. Unpaid carers are supporting people will much more complex needs than ever before, juggling the lack of funding and resources before their loved one’s transition into a care home.

Final Thoughts

Unpaid carers are not only vital to the wellbeing and support of those they care for, but also to the infrastructure of social care and the NHS as without them both would be overwhelmed, understaffed and underequipped. The government and local authority need to do more to break down the challenges that can make their roles incredibly difficult. We need pathways that are clear and understandable, reduced use of abbreviations, more awareness of unpaid carers, more support networks and allocated departments or social workers than can walk side by side of those delivering unpaid care to support them to navigate and check-in on how they are.

As a society, we have a duty to identify unpaid carers, check in on them and offer to support. We need communities to pull together to support one another and ensure that unpaid carers are given the recognition and support they deserve.