Barbara and Jerry are married and in their late 70s. They live together but in separate living quarters, and haven't lived as man and wife for 30 years. They both have physical health issues and difficulties moving around. Their daughter, Susan, lives elsewhere but provides all of their care.

A Carer Support Worker, Lemar, visits Barbara and Jerry's home to conduct a Carers Assessment. Susan was is present for the meeting. During the meeting it becomes clear to Lemar that Barbara, Jerry and Susan disagree about their care and that Susan's strong views were causing conflict between her and her parents and the relationship was breaking down. Lemar is concerned that Susan is speaking on behalf of her parents and that she was making decisions for them. Lemar has attended training on human rights from the British Institute of Human Rights and recognises that this is potentially interfering with Barbara and Jerry's autonomy (protected by Article 8 in the Human Rights Act).

Lemar gently asks Susan to step out of the meeting so that he can speak to her parents separately. Lemar speaks to Barbara and Jerry, explaining that they have a right to autonomy; to make their own decisions and have their views and wishes respected. Lemar also explains that they can have separate carers assessments, but they decided to proceed with a joint assessment. Jerry's health is deteriorating and he expresses a wish to move into a residential setting so that he can spend his last days comfortably. Barbara wishes to stay at home and tells Lemar that Susan wants both parents to stay at home so that she can continue to care for them. In the past, Susan has called Barbara’s GP if she’s not happy with the decisions her mother makes. The GP had previously assessed Barbara as having capacity and encouraged Susan to respect her mother’s decisions. It becomes clear to Lemar that both parents aren't speaking up for themselves because of a fear of Susan's views and her making decisions for them. Both Barbara and Jerry say this is causing them a great deal of stress and anxiety and they can't see a way forward.

After the assessments, Lemar gets permission from Barbara and Jerry to speak to Susan privately to present their views and wishes to her. Lemar explains to Susan that her parents have a right to autonomy and to have their views heard and make their own choices. Susan accepts that she needs to hear and respect their views. It becomes clear to Lemar that Susan is struggling to cope as the primary carer of both her parents and needs some support herself. This is impacting on Susan's personal relationships and her relationship with her parents. Lemar speaks to Susan about her rights as a carer and its agreed that all of them will meet together to discuss how to move forward.

The family openly discuss the situation with Lemar present and all agreed to support each other. Barbara and Jerry decide to trial having paid carers visit them at home and to continue to live together as they realised that they would find it hard to live apart. Lemar makes a referral to have an assessment of need by the local authority for Barbara and Jerry and a Carers Assessment for Susan so that they can receive the support they need.

Example from BIHR’s protect Care and Support: A Human Rights Approach to Advocacy

Watch a short video about this story here.

This story is also shared in BIHR's booklet Mental Health, Mental Capacity: Raising a Human Rights Issue