Experiences of carers of adults with serious mental illness
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Healthwatch Norfolk was Commissioned by the Norfolk and Suffolk Foundation Trust (NSFT) to find out more about the experiences of carers of adults with serious mental illness in Norfolk, and how they can be better supported. They gathered feedback through a variety of methods including a survey, interviews, and an online focus group, speaking to 83 people in total.
Just under half of survey respondents were dissatisfied that their voice is heard by staff if they made a suggestion or gave them information about the person they support. This was a common theme throughout the survey and interviews, with Carers commenting that they felt their voices were not being heard and they were not given the recognition, respect, or value that they deserve. Interviewees commented that they have had to fight for the person they support’s care and have generally encountered a range of communication issues which have left them feeling dismissed and not involved. This suggests there should be more staff training on the value of SMI Carers and how to involve them more in the care of the person they support.
Most Carers felt that caring has had a negative impact on their physical health, mental health, finances, and relationships. Almost half of survey respondents said they have found it difficult to get support for their own health and wellbeing. Several Carers also commented that when they did receive support this was not appropriate or specialised enough for Carers of adults with SMI.
The majority of Carers would like more information about SMI, medication and side-effects and more specific information and resources on being a Carer for someone with SMI. This suggests that Carers should be given information specific to the diagnoses of the person they care for, and ideally tailored to the person so that Carers and staff can work together to support the adult with SMI.
Many Carers think that their experiences could be improved if there was more mental health provision and better care for the person they support. There are issues with continuity of care, communication, and crisis services. Some Carers also have a lack of trust in services, due to poor experiences.
Overall, the findings of this report suggest that Carers are not having their voices heard, with many not being involved in the person they support’s care as much as they want to be. Carers’ experiences can be improved by there being more support for them, an improvement in Care for adults with SMI and if Carers were listened to and involved more.
The report has three recommendations about staff training, information and communication and involvement.