Driving Change: Fauzia
My niece, Fauzia, was transferred to a forensic psychiatric hospital in Northampton in 2012, the only option offered to us at crisis point. She had been improving at her residential school (which used positive behaviour support), until a number of environmental factors caused her Tourette’s, self-injurious behaviours, and anxiety to worsen. As a Consultant Child & Adolescent Psychiatrist; I feared that the specialist provision that the school & social worker were seeking did not exist in reality, and my worst fears were realised.
There was minimal handover communication and the hospital were not prepared for Fauzia’s admission. She was immediately fully restrained for the first time in her life and placed in seclusion, where she remained for a number of weeks to months. She suffered a catastrophic deterioration in her emotional health, as she was repeatedly medicated, restrained, and kept in isolation. The inpatient team did not have expertise in, or an understanding of, Fauzia’s complex needs. I came to understand that not lonely is the system not able to meet the needs of our most vulnerable children, it is damaging and lacks understanding.
Until we gained support from the CBF, we felt powerless and increasingly hopeless. The hospital's interactions with the family were defensive and aloof. The RMO/consultant paid lip service to the families’ concerns; the hospital’s formal complaint system was wholly ineffective. We were advised to submit a formal complaint, which prompted a poor quality dismal response from the hospital, and over a year later we have still not received a full response from NHS England. Fauzia finally moved to a specialist provision with the right expertise at the end of 2014. She is no longer restrained or medicated; the improvement in her life has been profound and immediate.
Changes need to be made so that families are involved in decisions about their relative’s care, and professionals can secure the right care and support for young people like Fauzia. There needs to be expert commissioning of the appropriate services and interventions for this group of highly complex patients – the relevant specialist expertise is not present in local services or so-called ‘specialist’ national inpatient services. There should be a responsive independent complaints process, and families should be given clear information about who is ultimately accountable, as well as advocacy for the patient.
My advice to other family carers is to try to work collaboratively with professionals and organisations as far as you can. If you are not being listened to, escalate concerns to senior managers and use formal complaint structures. Seek advice from CBF and experienced solicitors, and try and find good advocacy for your relative. Be consistent, calm, and polite. Always be confident in your knowledge of your child/relative. When it comes to your child, you are the expert. If the professionals do not appreciate this, then this is an indication of their lack of understanding. It is deeply distressing and exhausting. Do not give up.
Shahana Hussain, Fauzia's aunt