Following a safeguarding concern over serious bruising on my daughter’s armpits, sustained at her care home, we have been through all the processes in place to try to get my daughter out of the care system.

Assessments carried out by people who do not have understanding of severe LD. Advocates brought in to speak on behalf of my daughter who spoke on their own behalf, as they were unable to communicate with my daughter and unwilling to speak to me. Local authority appearing unwilling to take on board my daughter’s and our wishes.

Constant changes in social worker means we have to start processes anew each time a new social worker is allocated. As my daughter lacks capacity, what is deemed in her best interests does not take into account her wishes. Parents are regarded as a hindrance.

We experienced:

Anxiety
Mistrust
Feeling of helplessness
Feeling of hopelessness
Sheer fear for my daughter’s safety

I wish our support had:

Been person centred
Provided consistency
Prioritised my daughter’s wellbeing
Worked with me – not ostracise parent/carers

One piece of advice I would give to public service leaders:

Be person centred
Provide consistency for vulnerable people
Prioritise wellbeing
Prioritise “care”
Exercise humanity
Enable all professionals involved in interacting with disabled people who lack capacity to access comprehensive and effective training in communicating and understanding them.
Liaise with parents/carers – prioritise working together

Why do you feel that our report on Systems Generated Trauma is so important?

I believe cultures are formed around working processes which place those processes over the purpose for which they exist. The human being gets left behind and becomes insignificant, overshadowed by systems. I believe there is a dire need for those processes and systems to include human values as a top priority. I hope that a report into the damage not doing so can cause will lead to a change in the way systems are implemented for vulnerable and disabled people