Lucy’s story – Free Our People Now
I was 17 and at school studying for my A-levels. I had aspirations to go to university to study Speech and Language Therapy. During this time, I was being bullied by a group of boys in my year…
My experience of Supported Living
My name is Lucy and I am 36 years old.
I have a diagnosis of schizoaffective disorder and autism.
So, when did my illness begin?
I was 17 and at school studying for my A-levels. I had aspirations to go to university to study Speech and Language Therapy. During this time, I was being bullied by a group of boys in my year both physically and verbally. I was suffering from low mood and began to self-harm. I went to my GP who advised I went to the school counsellor and started me on antidepressants.
After school I took a gap year and worked in a deli. During this year I had my first hospital admission at the age of 18. I was admitted to a Psychiatric Intensive Care Unit (PICU) and began experiencing psychotic symptoms. I was very frightened by the experiences I was having as well as the other patients on the ward. However, during this admission I became closer to a school friend Dave and we started dating and I was discharged from hospital.
I was out of hospital for 3 years and studied Speech and Language Therapy at university. Due to my mental health needs, I saw a mentor and was given extra time in exams. During the 3rd year of university, I moved in with Dave, but my mental health was deteriorating. I decided not to complete the 4th year of my course, but left university with a distinction in Speech, Language and Communication Sciences.
Time in hospital
At the age of 23 I began a 10-year stretch in hospital. It started in Hertfordshire, in and out of acute hospitals and I had numerous contacts with the police. I was becoming more paranoid and had made many suicide attempts. It was around this time I was transferred to a hospital in Cambridge for people with complex mental health needs and was diagnosed with autism. I am sad to say I became violent due to the paranoia and was moved to a secure private hospital.
I spent the next 6 years there, with some of the time in seclusion. Unfortunately, Dave and I broke up as he could not see a future for us together. I had a serious reaction to medication I was given and spent a month in Intensive Care. I was very depressed and stopped eating and drinking leading to me being fed through a nasogastric tube and being prescribed Electro Convulsive Therapy. The final 6 months in this hospital were spent in a rehabilitation ward, where I was given more freedom and I had a job feeding the animals in the hospital farm and giving out drinks and snacks at the social club.
I was transferred to another rehabilitation ward in Sussex. This meant I was 2 hours from home. The placement didn’t work and I ended up in the hospital PICU. The psychiatrist on this ward encouraged me to go to the local gym to swim and attend pilates classes. I started spending days out with my family and spent my time making cards to sell in the hospital reception with the proceeds going to charity. I was being seen by a psychologist who invited Dave to do joint therapy sessions. Our relationship went from strength to strength and we started dating again.
After a couple of stable months, the team looked for me to move back to Hertfordshire. The NHS rehab placements came to assess me but said I was too high risk to be placed there. I was then put in contact with a supported living placement in Herts and they agreed to take me. The transition was well planned, initially I went for the day with a member of staff and gradually spent the week there by myself.
This was also the time I met the Enhanced Recovery Outreach Service (EROS) and my new community care co-ordinator. During this transition I was asked to identify some goals I wanted to achieve. These included reaching out to my friends who I had lost contact with, swimming in a new swimming pool, finding an online education course and making an omelette.
The EROS team has a wide range of disciplines working within the team. I had support from a social worker to help with benefits, a nurse to help with medication and an OT for practical help.
I also had support from the staff at the supported living. They came to my monthly depot (antipsychotic) medication appointments and to reviews with the psychiatrist. On a weekly basis they came shopping on the bus with me and go for a coffee and a key worker session.
During key work sessions I had the opportunity to identify things that were troubling me and would find solutions to these problems. We would sit and do a mind map so everything was visual and I could track the progress I was making. My care co-ordinator arranged a direct payment for me to contribute towards a gym membership and a laptop.
Making life plans
After a year in supported living I went on a holiday of a lifetime to Barbados with Dave. Here he proposed to me and we started to plan the rest of our lives together. I was busy planning a wedding and had several sessions at the house making wedding invitations and table decorations. The staff and other clients helped. Around this time, I also started working for the local NHS trust as an Expert by Experience. Attending meetings and sitting on interview panels.
I have been on medication since leaving hospital and my medication was stored in the office and dispensed by staff. The medication was in blister packs. I wanted to self-medicate before I moved out so was given a plan of having the medication in a locked cabinet in my room. Initially I had to go and get staff who had the key and they would open the cupboard. After a couple of weeks, I was given the key and had to have staff witness me taking the medication. Then I would take it independently and tell staff I had taken it and then finally I took it by myself with a weekly spot check. My confidence grew in taking my own medication.
At the supported living I had my own room with a small kitchen and a separate bathroom. I also had access to a communal kitchen, lounge and dining room. I often cooked in the evening with my friend and staff would support us. They offered a range of sessions, one a day, including arts and craft and baking group.
Not all the residents got along and often verbal and physical fights would happen. The police were called on a regular basis and sometimes it was an unpleasant place to live.
After the engagement to Dave, we decided to get married in April of this year. The staff at the house and my care co-ordinator wanted to plan for the move out of supported to independent living as in the past transitions have difficult. My care co-ordinator arranged for support workers in the community, so they come round 3 afternoons a week. They started visiting me 2 weeks before I left supported living. The staff at the house helped me with phoning the benefits people to change my address and with showing me how to reorder medication on the NHS App.
I got married on 15th April and then we went on a 3-week honeymoon to Bali. On my return I now have support workers who help me with shopping and cooking. We also play scrabble, a game which I enjoy. Supported living definitely bridged the gap from a long stay in hospital to life in the community.