I get £1,000 a month in benefits to care for my son – I can’t pay into a pension

Stephanie Whitelock, a mother of three living in Reigate, Surrey, finds herself in a precarious financial situation as she balances the demands of caring for her son Gabe, who has cerebral palsy, autism, and a learning disability. With a monthly income of £1,000 in benefits, she struggles to contribute to a pension, highlighting the challenges faced by unpaid carers in the UK. For Stephanie, the decision to leave her previous job at a sixth-form college in 2018 was driven by the need to provide round-the-clock care for Gabe, whose condition requires extensive therapy and support. Her choice came at a personal cost, including the loss of career progression and the emotional toll of managing her son's complex medical needs.

Before Gabe's birth, Stephanie worked part-time in student services, supporting vulnerable students. However, once Gabe was born, the demands of his care quickly became overwhelming. As a single parent, she had to take unpaid leave from her job, which eventually made her position untenable. She described this period as emotionally exhausting, even suggesting she might suffer from post-traumatic stress disorder due to the intense pressure. Despite the sacrifices, Stephanie remains deeply committed to her role as a caregiver, calling it "an amazing" responsibility.

Currently, Stephanie works part-time at a nursery, dedicating seven hours per week to cover lunchtime shifts. While this provides some financial stability, the pay remains modest. Her husband, James, works full-time as an IT infrastructure manager, helping manage household responsibilities and ensuring Gabe receives adequate care outside of school hours. Their combined efforts have kept the family financially afloat, though they live within tight limits. They avoid costly luxuries, such as overseas travel or buying new clothing for all their children, opting instead for second-hand items where possible.

The financial burden of Gabe's care extends beyond basic expenses. Private therapy sessions for Gabe, which can cost over £100 per session, have been funded using credit cards in the past. Additionally, the family raised £10,000 online to afford a trip to the United States for specialized treatment aimed at improving Gabe's mobility. These expenses, along with ongoing costs for sensory toys, appropriate clothing, and incontinence products, place a significant strain on their budget. Gabe's requirement for a leg splint further complicates matters, necessitating the purchase of two pairs of shoes to accommodate his unique needs.

Looking ahead, Stephanie expresses concern about her long-term financial security. Unlike her husband, who contributes to a workplace pension, she has not added funds to her own pension account. She acknowledges that the amount currently saved will likely fall far short of what is needed for a comfortable retirement. Moreover, she worries about the future of Gabe, who will remain under their care until they are no longer able to provide for him. This uncertainty underscores the broader issue facing unpaid carers in the UK—how their contributions are valued and supported in terms of financial planning and social welfare.

Stephanie and her husband receive a total of £1,000 in benefits each month, with £400 allocated to her as a carer’s allowance and £600 to Gabe through disability living allowance. Despite these payments, Stephanie feels that the system does not adequately recognize the value of her unpaid work. She advocates for changes that would allow unpaid carers to work more hours without losing their benefits, arguing that such flexibility is essential for maintaining both their livelihoods and their ability to care for their loved ones. As the family continues to navigate the complexities of caregiving, their story reflects the growing need for systemic support and recognition of the vital role unpaid carers play in society.