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Like-minded organisations in pursuit of restraint-free services

Team Beth – The Solution to Lock-down Blues

I am so proud to be parent to Bethany, an amazing 19 year-old whose story of inappropriate restraint and seclusion made national and international news headlines.

I campaigned for 3 years to have Beth’s autism needs met in a way other than through long term segregation and seclusion in inpatient Mental Health units.

Due to the horrific facts uncovered surrounding her care, Health Secretary Matt Hancock ordered a Thematic Review into the use of Seclusion and Restraint in inpatient settings.

Other campaigning work has included involvement in the CQC Review as part of the Expert Advisory Group, presenting Bethany’s story to the Joint Select Committee for Human Rights looking at Seclusion and Restraint, and to Anne Longfield in her role as Children’s Commissioner. I also speak at numerous Learning Disability conferences and events.

Formally a college tutor turned lorry driver, I have now changed my work to support the delivery of Care Treatment Reviews, and have recently been engaged as the co-chair of the NHS Parent Council looking at making changes to the experiences of care currently offered by NHS specialist inpatient services for vulnerable children with learning disabilities and/or autism.

I’m loving supporting Bethany in a new environment away from seclusion

I’m loving supporting Bethany in a new environment away from seclusion whilst continuing to engage in campaigning for better treatment of Autistic people in inappropriate inpatient settings.

Beth finally moved from being kept in seclusion just before Christmas last year. She is still in a secure service, the damage caused by 3 years of isolation means she currently struggles with new experiences, but the setting she is in is entirely bespoke and flexible to meet her evolving needs.

The last I saw Beth was on 15th March, a lovely sunny spring day. We went for a long walk near her flat and spent time planning days out, fishing trips and possible holidays. Beth told me how her life was constantly improving and how lucky she felt she was having such an awesome team of support workers.

Recent days had seen an increase in coverage of Covid-19, the wretched Coronavirus creeping across the world, seemingly unstoppable, clearly indiscriminate, and certainly highly contagious. Having seen the images from Italy and Spain it was evident the UK would soon be under a similar set of constraints. People were being advised to work from home and the news reports showed supermarkets with empty shelves.

The timing of the ban on visits, followed a week later by the formal lock-down could not have been worse.

On the 16th March I received a call from the staff at Beth’s unit. Family contact was being withdrawn due to the fear of transmission.

Although expected it was still a hammer blow. Beth is my world. For her last 9 years in care I had never skipped a visit. For the last 3 years, where she has been in hospital, locked in a seclusion cell I had knelt at tiny feeding hatches to see her, hold her hands, and tell her how much I loved her.

How will she cope without me?
The truth is simple. Far better than me!

The timing of the ban on visits, followed a week later by the formal lock-down could not have been worse. Beth had made so much progress that her ability to go into the wider community had just been increased. She had been involved in planning trips to the local shops, a hairdresser, a garden centre to buy plants for her garden and walks in the local and beautiful Ribble Valley.

Beth was instantly supported by her team with Social Stories to help her understand why sudden the changes were being made.

Beth was instantly supported by her team with Social Stories to help her understand why sudden the changes were being made. These were shared with the family so we could reinforce the same messages.

The decision to ban visits before the formal lock-down began was to protect the staff provision. Beth has her own team of carers. This is vital for Beth; she needs to trust the people around her and they need to fully understand how Beth sees the world and people in it. Team Beth all fully understand Autism, her Demand Avoidance profile and they are all trained in restraint reduction. They know how to avoid the triggers, reduce anxiety and manage escalation in behaviour instead of just immediately resorting to restraint followed by seclusion.

Beth was kept fully informed when staff had to self-isolate and take time off. When face masks were introduced for staff, Beth was offered one too. To make the face masks less daunting Beth was involved in designing faces and pictures which her team then helped her to draw on them and colour in.

Due to Covid-19, Beth is very scared of the world outside of her flat. Previously she would go for walks around the beautiful grounds as often as she wanted. She found real enjoyment in going for long bike rides. Now she chooses not to go out at all. Beth’s fear is other people having the virus.

Even though her team have ensured she understands the 2 metre distancing rules, Beth is just too fearful of how others she meets may act. To support Beth, staff have taken to providing her with trips out in the car and to help her enjoy the health benefits of cycling they have bought in an exercise bike. 

Knowing how important exercise and fresh air are, and to make the lock-down experience as positive as possible, the team focused on her garden. Beth loves being out in the open and luckily the weather gods have smiled on us all; seeds and plants were ordered online and garden tools were bought in by the staff. They have also bought in plants from home and water pistols to engage her in water-fights.

Beth is in the right environment. She has the right team of people around her. She has the activities to occupy her. She is given the right information.

For 3 years Beth’s experience of staff had been people sitting outside your door. Some would chat, some would engage in activities permissible in locked wards – mainly colouring in. Others would sit in cold silence refusing to engage or reading a book. Here it is so different, her team see the benefits for Beth and themselves of joining in. How many carers take a change of clothes to work on a sunny day just in case a water fight breaks out? Or as in the photo below, a male member of staff has at Beth’s request put on some of her clothes so he can be involved in a water fight…

Beth is in the right environment. She has the right team of people around her. She has the activities to occupy her. She is given the right information.

Her team allowed Beth to re-purpose her Guinea Pig hutch as a greenhouse and she is so pleased to have grown her first plants.

Beth lives in a flat – it’s a decommissioned ward that was reopened and redesigned to be a single occupancy living space. It’s secure, it has a locked door. But it is designed to support Beth. The front door doesn’t say “Willow Ward” or some such twee name to make it sound relaxing, it says “Beth’s Flat”.

It’s hers. It’s her home – for now. Inside it is very spacious with an open plan layout and acres of empty air – vital for Beth as she struggles with being in enclosed areas now. The colours on the walls were chosen by Beth before she moved in. She has a Yoga room where one wall has a bright graffiti style logo. She has a kitchen where she can cook cakes and simple meals for herself and the team. She has an enormous garden that in the recent glorious weather has proved to be so important as a way of keeping her relaxed and engaged.

There are no blanket policies in this setting. Beth can have the simple things that were previously ridiculously denied her; cutlery, plates, pens and pencils, glue, magazines with staples in, as many phone-calls a day as Beth wants, a TV with her PlayStation, her Wii and a multitude of DVDs. And the ultimate necessity for a happy Beth – A fully internet enabled iPad, bought with the benefits that that had built up over 3 years of incarceration. Beth is learning the value of money through managing her own budget to buy clothes, games, make up, seeds and plants for her garden, water pistols and costumes she can wear to engage in the role-playing dramas she engages in to reduce her anxiety when things get too much.

It hasn’t all been plain sailing. Beth’s shown a slight increase in anxiety driven behaviours. The difference is here it’s understood and expected.

It hasn’t all been plain sailing. Beth’s shown a slight increase in anxiety driven behaviours. The difference is here it’s understood and expected. Each event is seen as a reason to try new experiences or different approaches. It’s never seen as a reason to blame Beth. It’s never seen as a reason to restrain or seclude her.

It’s seen as an opportunity to do something else remarkable, a chance to involve Beth in her own solution even if that means wearing some of her clothes so you can join in a water fight.

A chance to help Bethany enjoy lock-down.

I can’t wait for lock-down to be lifted so I can sit in her garden and listen to her tell me how the absence of blanket rules, staff creativity, the freedom to experiment, and making adjustments has made her miss me less than I’ve missed her!

Thank you,

Team Beth x

I can be found on Twitter as “Bethany’s dad” @Jeremy09406697