Turkish Speaking Carers Feedback on NHS

Healthwatch Hackney and City and Hackney CCG funded Minik Kardes to undertake research on the experience of Turkish Speaking parents of disabled or SEN children'  of NHS Antenatal, Intrapartum and Post Natal Care and Disability Services.  They spoke to 26 people.

The research aimed to capture the perspectives of a vulnerable and often underrepresented group facing both language barriers and the challenges of disability. It used focus groups, interviews, and questionnaires with around a dozen parents, most of whom were mothers. 

The findings show that many parents experienced significant problems during pregnancy and birth care. These included late or missed diagnoses, poor communication, inconsistent medical decisions, and in some cases perceived medical negligence. Several parents reported that important conditions such as Down syndrome or autism were not identified early enough, limiting their ability to make informed decisions. 

Language barriers were a major issue throughout the care pathway. Many parents struggled to understand information because it was not provided in their first language, and interpreter services were inconsistent, sometimes unprofessional, or even breached confidentiality. As a result, parents often felt excluded from decision-making and unaware of their rights, including the ability to seek second opinions or make complaints. 

Parents also reported dissatisfaction with how information and support were delivered. Few had been told about antenatal classes, complaint procedures, or services like PALS, and none had attended antenatal classes due to lack of awareness. Communication about risks, procedures, and available support was often inadequate, leading to confusion and distress. 

Experiences during labour and birth were mixed. While some parents praised staff attitudes and care, others described delayed interventions, insufficient monitoring, and inconsistent responses in emergencies. Several accounts suggested that earlier or more appropriate interventions could have prevented complications or reduced risk to the child. 

Postnatal care showed both strengths and weaknesses. Health visitor support was generally well regarded, and services like Hackney Ark were praised for accessibility and specialist support. However, many parents were unaware of or unable to access psychological support, despite expressing a strong need for counselling to cope with the emotional impact of raising a disabled child. 

A key issue identified was delayed diagnosis of children’s conditions, sometimes taking years after parents first noticed concerns. This delayed access to treatment and support services, increasing stress for families and potentially affecting outcomes for children. 

The report also highlights gaps in support for fathers and partners, who were rarely involved in care processes. Additionally, domestic violence issues were not always identified or appropriately addressed, and culturally sensitive approaches were often lacking. 

Overall, parents called for a more patient-centred and culturally sensitive NHS system. They wanted earlier diagnosis, better communication, improved interpretation services, stronger emotional and mental health support, and more consistent involvement of specialists. They also recommended clearer information about rights and services, greater partner involvement, and more accessible antenatal education.

The report concludes that improving early intervention, communication, and culturally appropriate support would help reduce inequalities, improve access to services, and lead to better outcomes for both parents and children.