24th Day of Lent: Going without… carers being listened to

Rebecca writes:

“Carers of children who develop mental illness cling onto hope – initially, hope for a complete cure. The shock of a child’s personality altered by incurable mental illness, with their future in jeopardy, takes years to understand. Gradually acceptance emerges with the constant hope that the cared for person attains insight into his or her condition and retains equilibrium by being medication compliant.

Under the Trust’s new strategy, people who – sometimes after many years of suffering – have reached this stage are being penalised by not being offered appropriate therapy and support to recover beyond self-medication and self-sufficiency.

The best ever comment to the person I care for from a consultant was, ‘You look so well that if I did not know you were ill, I would not be able to notice that anything is wrong with you.’ That gave me hope. However, this was when the person I care for was receiving regular support and monitoring from the Trust’s Assertive Outreach (AO) teams. Under the new Trust strategy, as a carer I am despondent about the future. People with mental illness live on the edge of their conditions. Crises may happen at any time. Presently crisis teams are also working ‘on the edge’ because there are insufficient beds available for people in crisis.

Surely, there are less vital aspects of the Foundation Trust’s elected distribution of its budget that could be dispensed with? Who made the decision to dismantle the assertive outreach teams? Who is scrutinising how the given budget is distributed between essential services and not being squandered on non-essential initiatives like consultations the results of which are ignored?

Carers acknowledge national moves towards care in the community, but discharging people with inadequate routine care is dangerous. Who is responsible for closing beds before alternatives are available in the community? Who is responsible for dispensing with clinical staff with years of experience at huge expense, with the result that remaining staff are stressed and desperate to provide a safe service without the time to do so? Who decides to close beds and siphon off patients to private nursing homes at twice the cost of the beds they are closing?

Who cares about the carers? At one time we hoped that the Trust was listening to us. Now we know the decision makers are immune to our concerns.”