When Dimensions was first introduced to Susan* she was living in an Assessment and Treatment Unit(ATU). She had been there for two years, and had been in and out of other ATUs over the years. In the secure unit Susan was limited to walks around the grounds and occasional outings, dependent on the availability of staff and the other residents. Food was limited to set times and menus.
Susan had adapted to the ATU. She had a routine and knew that it kept her safe but she was overwhelmed by the other people living there, often choosing to sit in the quiet room. Other people’s behaviour had a big impact on her and her own behaviour was her coping mechanism.
Several attempts to support Susan in a less clinical environment had failed. Fortunately those around her continued to believe in her and explore new options.
Together with Susan, the team then began a transition plan including shadowing and spending time with her over a period of four weeks. During this time they got to know Susan and her needs thoroughly, and Susan began to develop relationships with the people who would be supporting her in future.
After adapting to life inside an ATU, initially Susan had some difficulties settling in to life in her home, but the team worked through these with her to ensure she was happy and had settled in to her new life. She was obsessed with food, especially sweets, however once she realised food was no longer limited, she became more relaxed. Similarly she was initially less interested in her personal care and would resist staff attempts to support her with this.
We quickly realised that Susan loves having her makeup, hair and nails done. A trip to the hairdresser, something the team had been told would be too distressing for her, provided a positive recent outcome. Susan also delights in baking and singing along to music, doing both with real gusto.
Susan was supported to visit her Mum, who she hadn’t seen for a number of years and who now lives in a care home. They enjoyed a cup of tea, a slice of cake and a chat. They also had a photo taken together. Susan enjoyed the car journey.
Stretching her wings, Susan now enjoys going out for a cuppa and a piece of cake, fish and chips at the beach, and particularly the local aquarium.
Susan speaks with a mix of short sentences and Makaton, which her support team has learned. With Susan’s permission, some of the key signs are also displayed on the walls at home for everyone’s benefit.
Susan has been engaging really well in active support and making her home her own. Together, she and her team took advantage of lockdown to learn household jobs such as laundry, baking and tidying – don’t leave her milk out! She is gaining choice and control over her own life.
Shortly after Susan had moved in she was diagnosed with breast cancer. Staff had been told that Susan wouldn’t tolerate a doctor’s appointment, yet with the right support and careful planning Susan managed to get through the invasive, difficult tests. Initially, treatment was with medication (this involved many trips to the hospital), but after 18 months the decision was made to do a mastectomy. Whilst in hospital, doctors complimented the support Susan received and she was soon discharged. Despite a number of issues with her scar (and Susan pulling her drain out the second night she was home) she has healed.
Staff have supported Susan through 2 periods of crisis and self-injurious behaviour. The first lasted 6 months, during which her mental health suffered greatly. She feared she would be sent back to the ATU, and constantly asked, “Stay here always?” to which staff would reply “Yes Susan, stay here always” whilst holding her hand for calming reassurance and to stop the self-harm. The number of staff was increased by one during the day and one during the night. 3:1 staffing was funded by the CCG to prevent readmission to hospital during a period of crisis.
Her team received PROACT-SCIPr-UK® training between the periods of crisis. This is a values-based approach with an emphasis on being proactive – getting it right for the person, rather than being reactive or responding to an episode of challenging behaviour. The aim is to raise the person’s self-esteem, improve quality of life, empower them and enable them to live a more independent and fulfilling lifestyle.
When it came, the second crisis lasted ‘only’ 2 months. We think there were many contributory factors:
- Susan had developed greater security and confidence.
- Her team spotted the early warning signs, so additional funding was accessed sooner, which allowed the staffing increase to be immediate.
- Staff who had supported Susan for the first period role-modelled to newer staff.
- In line with the PROACT-SCIPr-UK® training staff used distraction tactics and supported her to create coping strategies. As an example during the first crisis period staff would sit with Susan and hold her hand for hours, they didn’t do this during the second.
- Following a Behaviour Support intervention, some of Susan’s challenging behaviours were less frequent. However this time she refused all food, drink and medication and spent a short period in hospital with dehydration and constipation. We’re all still learning about Susan’s anxieties and their triggers.
Susan will live an ever more ordinary life, but we know she will probably always go through crisis periods. The right resources are in place: She has an experienced team, flexible funding and staffing, and access to the Dimensions Behaviour Support Team together with the CCG’s Intensive Support Team and learning disability nurse team.
Previously, crisis would have seen Susan returned to the ATU. By sticking with her through two crisis periods, a deep level of trust has developed between Susan and her team. Staff now feel confident that they can spot the early signs and continue to shorten future periods of crisis without requiring readmission to the ATU.
*Names and images changed
Learnings from a crisis
- Susan had developed greater security and confidence.
- Staff recognise early warning signs. This means funding can be accessed and staffing levels increased.
- Experienced staff role model and train new staff
- Staff trained in PROACT-SCIPr-UK®
- Behaviours will change but the team are confident they can adapt