Carers deserve a bigger voice

In order to support the millions of people caring for someone with mental ill health, we are calling for the carers to be: 

Involved, listened to and treated respectfully by services

Carers’ expansive knowledge of their loved one’s condition is often undervalued and ignored, with confidentiality frequently cited as a barrier to their involvement in discussions and decision making.

Local health systems must also be properly held to account for their involvement of carers in decisions relating to the person they care for.

Treated as partners in care by health and care professionals, who have received appropriate training to support this approach.

Carers’ experiences suggest that health and care professionals do not receive enough specific education and training on how to involve, support and effectively communicate with carers. A comprehensive training offer for health and social care staff would help to foster a culture of partnership between professionals and carers.

Offered full access to specialist carers support, including help to understand their rights

Being a mental health carer comes with complex and distinct challenges - including managing difficult behaviours, suicide risk, fluctuating support needs, isolation and stigma associated with mental illnesses.

Local authorities increasingly favour generic carers support amid financial pressures. Specialist mental health carers support should be expanded to ensure these carers understand their loved one’s condition, feel able to navigate treatment and support, understand their rights, and get support for their own wellbeing.

Supported to avoid financial hardship while undertaking a caring role

Caring responsibilities can affect people’s ability to pursue employment, create worry for those juggling work and care and cause people to have to leave work entirely. Carers Allowance is set at too low a level to prevent unpaid carers from falling into hardship, and doesn’t take into account that caring roles may continue into retirement age.

The longer people undertake unpaid care, the greater the financial burden. Social security options for carers, such as Carers Allowance, must be increased and reformed to tackle financial hardship and account for the reality of caring across their life span.

Understood and assisted according to their individual needs and backgrounds

Every mental health carer is at a different stage of their journey, and all have different needs. Certain groups, such as older carers, young carers, LGBTQ+ carers and carers from racially minoritised communities face additional challenges when trying to access support. These groups would benefit from more targeted interventions to meet their needs. The voluntary, community, faith and social enterprise sector has a significant role to play in delivering this kind of support.

Assisted to plan for when they are not there, and for the future of the person they care for

Some adults living with a mental illness rely on older family members, particularly their parents, for unpaid care and support. Many older unpaid carers worry how the person they are caring for will be supported and housed when they are no longer around to provide this help.

These challenges require more focus within conversations between professionals, carers and individuals with care and support needs. Planning for the future should also be core to assessment of care and support needs, for those living with mental illness and their carers.