Desperate parents spoke up about their experiences following the first 7 days of Action. Rosemary Trustam reports.
This second 7 Days of Action took place from 10 to 17 October and was inspired by a mother’s post who blogged about how her son’s personal hygiene was completely neglected during his time in an Assessment and Treatment Unit (ATU).
After the first 7 Days of Action many people got in touch, desperate to share their stories. Thirty five people took part in the second 7 days. Others felt nervous about speaking out.
Heartbreaking
Those that did told heartbreaking stories. Why their children had been incarcerated, often miles from home, mainly concerned breakdowns of placements, closure of homes, accommodation needs, withdrawal of support or lack of local services. For some, like Stephen Neary, a short-term respite placement due to family illness or for others a request for temporary help, became a long-term placement.
No one had committed a crime, but of the 15 people released, their incarceration varied from 8 months to 4 years; two others had died in the units, 18 remained incarcerated.
Only two people had placements near home and half were 200 miles or more away. What is clear is that there was a lack of any appropriate planning or contingency plans.
Themes from people’s stories
A failure of forward planning
– It is dangerous to ask for support, even when it is dangerous not to. Some parents wished they had never done so in the light of what happened to their offspring – including the deaths of Connor Sparrowhawk and Thomas Rawnsley.
– Lack of understanding of autism
Autism is not ‘curable’. Inappropriate approaches can worsen behaviour. Parents saw their offspring losing skills and abilities. Mental health carers do not, generally, understand autism, which is a neurological condition, not a mental illness. Some of their coping mechanisms were interpreted as mental illness.
– Effects of medication and ‘treatments’
‘Treatments’ like restraint and seclusion can and do adversely affect health. Stories included medications causing huge gains in weight or over-doping and restraint injuries.
– Units are self-contained institutions
As such they run commensurate risks of neglect and abuse. Families who best know their offspring are sidelined, their expertise dismissed, their contributions disdained or blocked, and their visiting arbitrarily cut short or denied.
– Hard to leave
For people with complex difficulties, leaving an ATU is much harder than entering one. Short-term assessment orders or voluntary admissions lead to long-term detentions due to the distress caused.
– Funding falling between health and social care
Once local authorities have got someone into long-term NHS care, they are extremely reluctant to reassume the cost and effort of providing that person’s care in the community.
– Your adult children are not your children any more
If your children have learning disabilities or autism, they may not even be your family members. They belong to the state. One mother was told her son’s data protection rights override her right as his mother to seek a second opinion in his best interests. The odds are weighted – dangerously and disgracefully – against caring families. Parent-blaming is still widespread, as shown in the exchange recorded at 12.56 on day 7 https://whobyf1re.wordpress.com/2015/10/13/lbs-inquest-day-7-session-1/ of Connor’s inquest. Families’ rights to be consulted are easy to ignore or bypass.
Threats
Families inhabit one of two spaces: naïveté or fear. Speaking out about your fears can draw unwelcome official attention. You may even receive threats. Some families had thought about participating in 7 Days, and then decided it was too much of a risk.
So is there any hope? Yes. Families have bravely and generously shared their stories and begun a class action about unlawful detentions to put the duty on the local authority to assess whether the person has needs for care and support, and, if so what those needs are.
The campaign video starts to tell their stories https://www.youtube.com/watch?v=n3hqZ2jkvns&feature=youtu.be
