Experiences of carers in Tower Hamlets 2018-19

Healthwatch Tower Hamlets undertook research on the experiences of carers in Tower Hamlets. They spoke to 187 people caring for loved ones, including elderly parents, children with learning disabilities or special educational needs, and family members with serious long-term health conditions. Overall, carers reported predominantly negative experiences of health and social care services, with communication and involvement in care decisions emerging as key concerns. 

Many carers felt that health and care professionals did not communicate effectively with them or adequately involve them in decisions about their loved ones' care. Carers reported difficulties obtaining information about treatment, poor coordination between services, administrative errors and a sense that their knowledge of patients' needs was often overlooked. Hospital-related concerns included poor communication during inpatient stays, difficulties staying with relatives when needed, delays in care and discharge planning, and a lack of support for carers who needed to remain in hospital for extended periods. 

The report also highlighted challenges in community health and social care. Carers described poor communication about social care charges and eligibility, inconsistent domiciliary care, difficulties accessing support services and concerns that reductions in publicly funded services were increasing reliance on unpaid family carers. Many reported significant impacts on their own mental health, finances and employment, with caring responsibilities making it difficult to remain in work, access benefits or secure suitable housing. Community organisations and carers' support services were widely praised for providing practical advice and emotional support.

Healthwatch Tower Hamlets recommended improving communication between professionals and carers, ensuring carers' knowledge is considered during assessments and care planning, providing clearer information about social care costs and eligibility, increasing investment in carers' support services, and encouraging employers to offer more flexible working arrangements. The report concluded that carers play a vital role in supporting health and care systems and require greater recognition, involvement and support to sustain their caring responsibilities.