Experiences of carers of adults with serious mental illness (SMI)

Healthwatch Norfolk was commissioned to undertake a three-year project by the Norfolk and Suffolk Foundation Trust (NSFT) to find out about the experiences of carers of adults with Serious Mental Illness (SMI) to see how their experiences can be improved and how carers can be better supported. This is the report for the second year of the project and is for the period July 2024 – June 2025.

For the research aspect of the project, Healthwatch undertook a mix of desk-based research of national findings and local research carried out with carers. They contacted young carers’ groups and spoke to staff from five young carers organisations and nine young people from two young carers groups, to get their views and experiences. They also worked with a local voluntary sector organisation that supports migrants and refugees to help them engage with people who have English as a second language. To explore staff perspectives, they sent a short survey to NSFT staff and as part of the survey identified people who were willing to be interviewed. They spoke to 12 staff from NSFT.

Across all groups of carers, Healthwatch found that being a carer of an adult with SMI has particular challenges due to the unpredictability of the illness and concern about serious self-harm or hospitalisation. This can mean that carers suffer with anxiety and struggle with their own wellbeing. 

Stigma around mental illness can act as a barrier to seeking support for fear of judgement from others. Young carers are vulnerable, because they are not always recognised, especially by adult services and they do not always have the support they need. They also do not have any information about SMI to help them understand their parent’s behaviour.

Carers who are under the age of 45 years are often struggling with other responsibilities such as dependent children or employment. They often struggle financially and find it difficult to find non-judgemental support. 

For those carers who have English as a second language, accessing benefits, such as Carers Allowance and emotional and practical support for them as carers can be difficult. 

Staff said that they want to work in partnership with carers and do their job well, but this is hindered by large caseloads, a lack of time and an IT system that makes recording onerous.

Progress on the action plan was slower than  hoped, due mainly to restructuring and changes in the senior staff of NSFT. These made it difficult for carers to meet with staff to start implementing the action plan. These delays are hopefully now resolved, and more rapid progress can be made in year 3. 

Key recommendations

• Improve support and recognition of young carers
• Improve consent procedures and communication with carers in crisis situations
• Improve the electronic patient record system to make it easier to record and view carer details
• Produce more written information for carers about SMIs
• Staff should ensure that consideration is given to carers’ other responsibilities