The girl with no face

A week ago, Dannielle resorted to writing in blood on the walls of her seclusion cell. 23 years-old and autistic, her last ten years - mostly spent detained in hospital settings - have been defined by despair, but lockdown has brought unthinkable new lows.

The lifeline of seeing her mum every other day has been cut, with just one short visit since lockdown began. Agency staff who don’t know her, and didn’t sign up to work with someone so challenging, come and go. It was them she tried to reach out to in anguish, while they sat watching her on CCTV.

Dannielle writes poetry as self-therapy every day. Late last Saturday, she wrote:

Where were you when the tears fell… when the blood began to flow?

When I was writing fat and the girl with no face on the wall!

You don’t try to understand me,

You watch me every time I crumble and let me monumentally fall...

Where are you when I am hurting, bleeding,

When I need you most of all?

Where are you when I am frightened, I am invisible in this place,

Time and again the girl with no face...

Today marks one year since we saw horrific scenes of abuse in Whorlton Hall, broadcast by BBC’s Panorama. It’s almost nine years since the Winterbourne View scandal. Yet still today, Dannielle and over 2,000 more adults and children are detained in in-patient hospitals, denied the right to home and family life that keeps them well.

Shaken by what we saw on TV last year, we gathered as a self-advocacy team with colleagues and consulted with friends across England to write Six Big Questions for Transforming Care Partnerships. We met with health and social care leaders in Kent and Medway and encouraged other self-advocates to do the same where they are, knowing local partnerships needed challenging as much as the Care Quality Commission.

In lockdown, it’s Question 5 that called us to take fresh action:

Because providers of secure care are with people all day and night, they have too much power over people. This is a reason people in Whorlton Hall were at risk of abuse.

Do you agree?

How are families, advocates, professionals and you as commissioners involved with people, checking they are safe and getting better?

Lockdown has all but wiped out vital on-site scrutiny from families, advocates, commissioners and inspectors. The vulnerability of people to abuse and neglect has never been more acute.

On the plus side, Care and Treatment Reviews (CTRs) that make such a difference to moving out into the community were swiftly adapted to work online. Experts by Experience from bemix work in partnership with NDTi to take part in CTRs. Videoconferencing hasn’t stopped them reaching out with empathy and sensitivity. In fact, in other work we do, tools like Zoom and Google Hangouts have enabled us to invite people locked in secure units to join in with activities that normally happen in a building. New friendships are being made. This would not have happened without lockdown.

We believe empathy and shared life experience are the final keys that will unlock people from settings which limit their lives, destroy their hopes and expose them to abuse and neglect. The length of detention is as important a statistic as the total numbers. Some have lived in secure settings for well over 20 years, and can barely imagine any other reality. Moving out will itself be traumatic, for which peer-support throughout the journey can make all the difference.

Today, we and other self-advocacy groups are meeting with NHS England leaders to propose specific new measures while secure settings exist. We are asking for:

1. Peer-advocacy. We know people can see an independent advocate. But people can relate more easily to someone with lived experience like theirs. Dannielle rarely makes eye contact with anyone, but quickly connected with the young autistic woman on her CTR panel. We need much more empathetic connection like this.
2. Safeguarding training for people in secure units. This helps people to be aware if they are being abused or neglected, and what to do about it. It must be delivered independently of the care provider.
3. Self-advocacy training. This gives people more confidence to speak up if they are being abused or neglected. Self-advocates are the best people to deliver this training.

If we can equip people who have moved on from secure care to deliver this support and training, not only will empathy be stronger, this valued work will help their long-term recovery and wellbeing too.

If people detained in Assessment and Treatment Units felt invisible - “with no face” - before the pandemic, how much more unseen are they now? Many campaigns have brought their plight to public awareness: Rightful Lives, Stripped of Human Rights, #HomesNotHospitals and #HumanToo, among them, mostly led by ‘warrior’ parents. The stories of Matthew Leahy, Bethany and Alexis Quinn are among the most prominent and disturbing. With one year since Whorlton Hall in view, we and friends in Self-Advocacy Together joined forces with campaigners to organise the new campaign #right2home. Lockdown means the campaign is all online: videos and memes sharing hope of what home can really be, and selfies with posters and pledges to keep fighting for people’s #right2home. Today’s meeting with NHS England concludes the campaign’s five days of action.

Dannielle's #right2home poster (above), was made during an Occupational Therapy session in her seclusion cell. Our campaign is there to give her and others the face they feel they don’t have. It’s there to hold onto the hope that one day, as our company strapline puts it, she will be seen, be heard and belong.

Authors:

Steve is Co-Chair of the bemix Board, Jobs Champion and a supporter in Music and Arts.

Michael leads Inclusive Sport in bemix.

Sammy is a member of the Be Seen Be Heard group which campaigns in schools.

All three self-advocates are Experts by Experience in CTRs.

Matt is Chief Executive of bemix.

bemix.org/self-advocacy

@bemixUK

right2home.uk

@right2homeUK