My niece, Fauzia, is now 19 years old. She has a learning disability and autism and spent 22 months in an assessment and treatment unit called St. Andrew's hospital. You may have seen her in Channel 4's Dispatches programme saying she is "never going back, never going back" to that place.
Since leaving St. Andrew's she has come a long way from those dark painful days.
By the time she left on Monday 1st September 2014, the day she chose to "finally leave for good", she had pulled her hair out - and she loved her long hair. She was also underweight, despite food being her most favourite preoccupation in life, she had scars on the backs of her hands from the self-harm she inflicted on herself in pure distress. She had not left hospital grounds in nearly two years.
Fauzia was a traumatised 17-year-old girl who had spent 22 months in isolation in a hospital where she had been subjected to experiences never endured before or since leaving that place. Experiences I defy anyone to endure and not be damaged by. Let alone if you are a vulnerable child with autism, learning disability, tourettes, ADHD and severe anxiety.
There are over 3,000 people with a learning disability, autism and challenging behaviour stuck in in-patient settings across the country. These are places people should be sent to for a short period of "assessment and treatment" but are spending on average almost five years there where they are at heightened risk of abuse and neglect. Physical restraint, seclusion and overuse of anti-psychotic medication are all common practices.
We had to fight hard to get her out.
Recalling that time is hard, difficult to remember; the sheer desperation and deep sense of panic watching her disintegrate in front of us. Fauzia never cried as a child, not really. She has a high pain threshold and a fierce energy for life. But she cried at St Andrew's. All she ever asked was when is she coming home. How long, how many days. Again and again. Her autistic speech and behaviours became more pronounced, her verbal interactions were very repetitive. The inpatient consultant did not see the point of the family phone contacts that we complained were not occurring, as she said they were repetitive and unstructured. Fauzia has autism. Did she not know what autistic speech was?
My training and job as a consultant child and adolescent psychiatrist did not help. It should have, but it did not.
What did help occurred one year into Fauzia's admission as I was giving up hope that I would be able to do anything to change the situation for her.
I was put in touch (via the Tizzard Centre) with Viv Cooper the CEO at the Challenging Behaviour Foundation (CBF) who along with charities like Mencap have been supporting families and campaigning to get people like Fauzia out of these units and back into their community. Viv was the first person who really understood that this was a disaster. An utter nightmare and failed system of care for people with a learning disability who through no fault of their own were being housed in institutions often miles from home and their families.
It then took another year of the right people coming together, numerous meetings, letters, the minister of social care, NHS England London, various reviews, a dedicated mental health act solicitor (the second one), the local Social Services submitting two safeguarding referrals, a tenacious independent reviewing officer (the third one), support from charities like CBF and last but most important an excellent community based care provider, Alderwood, who were able to offer a place to Fauzia. This type of community care is so rare but it is what NHS England and Government have promised yet so far failed to develop.
When we first met the people from Alderwood, we thought it was too good to be true. Their staff weren't fazed by the most challenging descriptions of Fauzia's behaviours. Not intimidated by the huge secure institution Fauzia was an inpatient in and their bureaucracy. The Alderwood team worked tirelessly for four months to prepare Fauzia's transition out of St Andrew's to the care of a team who really do understand Fauzia and hence care for her. The change in her was like moving from night to day. She is now out in the community daily; shopping, cooking, dancing, playing sports, visiting adventure parks, weekend visits with her family. Her days are full and structured; she is happy and developing into the young woman she was always meant to be.
Channel 4's Dispatches should shock the nation. Fauzia's experience is not unique. There are so many families still battling to get their children and loved ones out of these institutions that can destroy people's lives and that of their families.
How we care for people with a learning disability in this country needs to change. My niece has to try every single day to forget what happened to her. For many, this is still a reality with no end in sight.