Crisis and the long journey back
When a support service was withdrawn for her sister, it was catastrophic. Jane Lloyd describes how loss of control led to crisis and an arduous road to recovery
A year ago, my 55-year-old sister, who is deaf and has severe learning disabilities, was detained in hospital for six months under the Mental Health Act. It was an incredibly frightening time for her and our family.
I decided to write about my sister’s mental health crisis because her experience highlights the devastating emotional impact of losing choice and control over how care and support is provided. Her experiences also illustrate the many challenges faced by people with learning disabilities when they develop serious mental health problems. I have chosen not to share her identity or the services involved as she is not able to fully comprehend the implications of consenting.
We believe the antecedent to my sister’s crisis began in November 2017, when she was told that sleep-in staff would be withdrawn from the home where she had lived for 11 years. She was shocked and very upset by the news, and confused as to why the support was being stopped. The care staff tried to reassure her, but that did not help quell her worries. As an alternative to sleep-in staff, a telecare alarm button system was installed in her bedroom that would give her access to a staffed monitoring service. She was told that she should use the alarm if she needed help at night, once the sleep-in staff had been withdrawn. Given that my sister is deaf, the telecare system was not accessible to her, as it relied on her being able to hear the staff on the other end of the system.
Crisis
Because of the way her disabilities affect her communication, she needs person-to-person contact. This is especially important if she is in crisis.
I told the service manager and reviewing officer that I was seriously concerned that if she remained distressed by the withdrawal of sleep-in staff, her mental health would deteriorate. It seemed that because of her learning disability she was being offered no choice or control over the support she needed to feel safe in her home.
<< She was abandoned by social care services, and we were left to support her, while trying to access specialist services>>
By May 2018, her mental health took a serious turn for the worse. Support staff told us that she was very confused Ð not changing clothes, not sleeping and packing bags when she was not going anywhere. This was completely out of character for my sister.
During a weekend visit to my house at the time, I was shocked and very concerned by the drastic changes in her presentation and behaviour. She was frequently tearful, and appeared very disconnected. She presented as flat, disoriented and anxious. She repeatedly asked me where she was going to sleep. She communicated very little with us – and hardly at all when we went out. She has always been very gregarious in interacting with people. She appeared to have very little interest in connecting with us or people she met outside.
Despite the seriousness of these changes in her presentation, and us asking for an urgent specialist assessment, care providers and social care staff were slow to respond. Eventually she was admitted onto a general medical assessment ward in the local hospital to rule out any physical causes. These were ruled out within a day and the doctor informed us that she was ready for discharge.
Her local authority reviewing officer, however, informed us that she could not be discharged as care staff in the residential home could not manage her behaviour, and that there were no alternative community mental health support services.She was effectively abandoned by social care services, and we were left as a family to support her, while at the same time trying to access specialist help.
During the hospital stay, she was in a distressed and agitated state, and repeatedly tried to leave the ward. Ward staff were extremely supportive, but it was the wrong environment for my sister to be in. My sisters and I stayed with her for the four days she was there, sleeping in a chair by her bedside overnight.
A better place but still detained
Eventually, with the support of a specialist learning disability liaison nurse, my sister was assessed and sectioned to a specialist NHS learning disability assessment and treatment unit. We were enormously relieved that she was at last in an appropriate NHS setting – we felt fortunate that a bed was available (one of only eight on the unit). However, it was very frightening to know that she was being detained. She was diagnosed with post-traumatic stress disorder and depression on admission. We were very impressed by the way the team on the unit supported her from the start. Their professional training and understanding of learning disabilities and mental health ensured the care and treatment she received was appropriate.
They demonstrated a strong commitment to working in a person-centred way, with an emphasis on building supportive relationships.Section 17 leave was agreed so that we could take my sister out of the hospital on visits. The ward manager arranged for a nurse who used British Sign Language to visit her regularly to support her communication.
<< We were relieved she was in an appropriate NHS setting but it was frightening to know she was detained >>
We were also reassured that the psychiatrist responsible for her ensured the community multidisciplinary team were planning towards going home from the time she was admitted.
It was a very traumatic time, however, as my sister was very unwell. She did not understand why she could not go home, the hospital and staff were completely unfamiliar and the unit was 50 miles away from her home. I visited once or twice a week, which constituted a round journey of 270 miles. I have horrible memories of my sister shouting my name each time I left because she wanted to leave with me.
It was clear that the unfamiliar environment and my sister’s deep wish to go home were hampering her recovery. In September, with the hope that her recovery would be hastened in her own environment, the psychiatrist proposed that section 17 leave should be used to enable my sister to go home, with support from the specialist community mental health team and ongoing support from the clinical team. My sister was told at multidisciplinary team meetings in September and October that she would be going home.
Delayed return
Despite these promises, the discharge process was frustratingly prolonged and delayed: first, by disagreements around who would fund the section 17 leave; and then by a devastating last-minute decision by the providers. The local authority wrote to us to say that she could not return home because the providers thought it would be best for her to wait for them to secure a new property, as her home was being decommissioned.
They said that my sister would need to stay in hospital until the new property was ready (potentially 3-4 months from then).This suggestion went completely against the professional multidisciplinary team’s care and treatment plans. At that point, I contacted a specialist solicitor to act on my sister’s behalf and support her right to return to live in her own home until the new property had been purchased. This is what she said she wanted to do.
At the end of November, my sister eventually returned home. Her recovery has been slow. She had lost trust in everyone and, for a long time, believed she would be taken back to the hospital unit. She spent a lot of time in bed. Initially, her care staff expected her to present as she had done previously – it took them time to learn that my sister’s recovery needed to happen at her pace and in her way.
Last week, I attended her first review in her new property where she has been promised a home for life. She shares a house with two other people with 24-hour staff support, including sleep-ins. My sister is making a slow, steady recovery. Since discharge, she has received excellent community-based support, including from a psychologist who is helping her manage anxious memories and worries about returning to the unit.
The Transforming Care strategy for People with Learning Disabilities states that hospitals are not homes, and that people need the right support and opportunities to recover in their own communities. For my sister, residential care is a positive choice – it provides her with familiar staff who are giving her the emotional security, support and opportunity to continue her recovery.
Experiencing the sectioning of my sister was very frightening. As a social work academic, I have knowledge of the law and policy that allowed me to advocate for her to some extent. Many people with learning disabilities who are sectioned will not have relatives who feel able to challenge poor decision making. This increases the risk of decisions being made that are harmful and undermine recovery.
