When Lily* arrived at Shaftesbury Somerset, aged 18, she was very underweight and in a state of high emotional distress.
‘She came to us as an emergency, because there was a lot of stuff going on at her previous placement,’ said Sharon, Somerset team leader. ‘She had behaviours that were very severe and night terrors.’
Lily, now nearly 23, is non-verbal and has very complex needs including autism and possible ADHD, along with several other debilitating conditions.
Lily lives in a flat that is part of Shaftesbury Somerset supported living service. Her arrival was very testing for the staff because her behaviours were aggressive and unpredictable, some of which Sharon believes was learned behaviour from previous living situations.
Consistent staff best for wellness
Sharon realised providing a consistent staff team was essential for Lily’s wellbeing.
‘She gets very upset if people she doesn’t know – perhaps agency staff – come into her room,’ explained Sharon.
‘So we’ve got a regular team of five daytime staff and three waking-nights staff, who cover each other’s leave so Lily is only supported by familiar faces.’
This has enabled Lily to move forward. ‘I think she presents the behaviours to determine who is going to stick with her – who she can trust to stay and who she can’t,’ Sharon said.
But however difficult it was, the team could see beyond the challenges, says Sharon: ‘Even when Lily’s behaviours have been at their most challenging, we always felt there was something positive there. She would always do something that made you think actually, there’s more than this to Lily.’
‘Lily never fails to surprise me – she’s a gem’
– Zak, staff member
Working with a psychologist, the team addressed Lily’s eating disorder, which enabled her to reach a healthy weight, maintained for eight months. This in turn meant Lily’s medication has been reduced.
Professionals praise Shaftesbury
Local commissioners and professionals are full of praise for Shaftesbury Somerset and the changes they see in Lily. Sharon said: ‘They’re all extremely pleased with her progress, say she’s come on 100% and she needs to stay with this staff team.’
Although Lily can still sometimes present distressed behaviours, her life is very different from when she first arrived. Change has been very slow but tangible, said Sharon.
‘Lily has been with us nearly six years, and she’s gone from night terrors to sleeping well at night. She is usually cool and relaxed, and enjoys rocking in her chair or lazing in the garden.’
This has meant, after careful risk assessment to keep Lily safe, staff have been able to introduce her to activities in the community.
‘Every day now she goes out somewhere, which is totally different from when she first arrived,’ said Sharon.
‘She’s done things other professionals said she would never do. We’ve done a pub meal, she’s been on a steam train and on a liner. But in our experience, when she’s out and about doing things, she doesn’t present any distressed behaviours. We haven’t had any problems at all. She enjoys the interaction of being around other people.’
Regaining trust
What else has Lily gained from living with Shaftesbury? ‘She’s learned to trust people and she no longer has night terrors – she will now have the light off at night,’ said Sharon.
‘She’s much more relaxed around food now whereas before, she would grab food and eat very quickly. She’s verbally picking up on some little words now, like “nope” and “ya”. She’s communicating well – if she wants to go out, she’ll bring her shoes to you and she’s learned to put them on herself.
‘We’ve found she has a very high level of intelligence. As we’ve worked on one behaviour at a time with Lily, she’s got a structure in place now, which I think she was craving and which she learned extremely quickly.’
‘Lily has a personality that keeps you mesmerised’
– Joshith, staff member
Lily’s story reveals the huge need for the dedicated care Shaftesbury provides.
‘Sadly, there are many young people with disabilities who are moved from place to place because they are deemed too difficult to manage,’ said Shaftesbury service director Jamie McClen.
‘In our experience, the challenges presented by these young people often arise from fear and anxiety about how their care has been provided in the past. At Shaftesbury, we want to see people flourish, and our amazing staff teams frequently go more than the extra mile to enable someone to settle and trust people again.
‘I’m so proud of what the Somerset team has achieved with Lily, the extraordinary effort they have made and the difference this has made to her.’
*Name changed