Mental Health Carers Need A Voice

The Mental Health Act is under review. In June 2017 The Mental Health Alliance published ‘A Mental Health Act Fit for Tomorrow an Agenda for Reform’ which called for reform particularly in the areas of Capacity and Advance Decisions, Community Treatment Orders and the Nearest Relative.

The concern about the role of nearest relative is the way it is determined by a fixed hierarchy, importance being automatically assigned to some caring relationships over others. “There was overwhelming support for the right to specify who from those close to them should be involved in making decisions”. But does the review of the Mental Health Act offer an opportunity to think more widely about the role of nearest relative?

Michael is in hospital again. The Community Mental Health Team has struggled to support him. His medication offers little relief and has terrible side effects. It’s understandable why he avoids psychiatric services. His psychosis exiles him to a dark, oppressive world of surveillance by government agencies plotting his assassination. Since Michael’s father passed away he has lived with his mother; they are inseparable. His mother attends to his most basic needs. They spend their days travelling on the bus, trawling the charity shops which Michael loves. They share a special bond.

However when Michael is most unwell he believes his mother is a secret operative tasked to kill him. He shuns her help, believing she is trying to poison him. Tormented, he barricaded her in, demanding a confession at knifepoint. He was detained under the Mental Health Act.

But after several months he is still in hospital. Pallid, neglected and several stones heavier, he has incipient diabetes. He appears morose and faces an uncertain future. He runs away from the hospital whenever he can. He can’t go home because he remains convinced that his mother’s doppelganger is against him and a locked placement many miles away, is reluctantly being considered.

It comes as a shock therefore when Michael’s mother applies for his discharge from hospital saying that she wants to take him home. Doesn’t she understand he is very ill? Can’t she see that she is still at grave risk from him? The frustration is palpable and her application for discharge is immediately blocked, prompting a hearing.

But as the evidence unfolds, Michael’s mother’s poignant words and her tears illustrate how she understands his illness better than we ever could but how she sees this through a very different lens. She sees him not as a patient but instead as her only son. From the carefree boy she raised, she has witnessed his descent into psychosis like his father before him, reliving the same stages of grief. She mourns her distant dreams for his future and in the quiet moments the uninvited shadow of guilt closes in. Yet, as she looks through her faded family photos, she still holds out hope that somehow she will someday get her Michael back.

Caring for him has taken its toll. She has sacrificed many relationships and she gave up a job that she loved. Watching his physical health decline, she worries, as no parent should have to, that she will outlive him. She can’t believe that he would seriously hurt her and she is far more fearful for his safety, anticipating that one day he simply won’t be able to face the bleak future ahead. She has voiced her concerns but these have been disclosed these to Michael, fuelling his fury. And she has been shut out beyond an impenetrable wall of Confidentiality. Nevertheless she has continued to fight. In her desperation she has sometimes complained. She suspects that she may have been labelled as “difficult”.

Perpective is everything. If we suspend our professional judgement momentarily, seeing Michael’s suffering through his mother’s eyes we can surely understand why she felt she had no choice but to apply for his discharge. Working with carers presents us with challenges, particularly when patients like Michael are unhappy for us to involve them. But we must find a way. They possess an expert knowledge which we will never achieve and they provide an anchor in patients’ lives which we, in our comparatively fleeting roles, easily undervalue.

In addition to the immense emotional and physical strain there is a significant financial cost. In 2016 the Office of National Statistics estimated that to replace unpaid carers with paid workers it would cost £56.9bn and perhaps this is conservative. Michael’s mother is not alone. She represents many carers I have met. We must hear their voices directly if we are to forge a better and more collaborative future. Only they can tell us how we might best reform our current legislation to enshrine the special relationship that is the nearest relative for the good of those we collectively care for.