Hagar's story

Advance Housing and Support. Complex Needs customer Hagar

Hagar is from a Turkish Cypriot background and came to England with her family when she was five years old. She attended a special school due to her learning disability. She was also diagnosed with bi-polar disorder. Hagar has very limited speech and was not taught to use sign language.

Due to the level of her challenging behaviour it was not possible for her to live at her parents home after the age of fourteen.

When Hagar came to Advance in 1993 she could not cope with a service which involved her living in a flat in a supported living scheme with one staff member supporting her. Due to an eating disorder there were huge risks around food preparation including the risk of Hagar choking. Hagar was excluded not only from mainstream services but also specialist learning disability services. Initially, Advance staff turnover and sickness levels were very high.

In 1996 Hagar moved from the supported living scheme to a residential home sharing with one other person. Staff were recruited to work with Hagar and her flat sharer on a one to one basis including having one wake-in night staff for both women.

Interacting with other customers was difficult for Hagar due to her limited speech and mood swings. Community participation was a challenge for Hagar and her staff due to the inherent risks involved. She had no sense of danger in relation to traffic. She found it hard to sit down in one place for more than a couple of minutes at a time which meant that using public transport safely was very difficult for her.

Involvement by the Tizard centre, University of Kent was requested, to support staff around positive behaviour support for Hagar. This resulted in a functional assessment being completed and guidelines put in place to support staff around working with Hagar. Strategies were developed with input from the behaviour specialist in terms of supporting Hagar to manage her behaviour more effectively. Staff training was provided with input from the Tizard centre to enable staff to become more knowledgeable and confident in supporting Hagar.

Behaviour support plans were put in place to ensure that Hagar was provided with structured community based activities each day, throughout the day to give her greater opportunities to participate in community activities and interact with people in the community. Her behaviour was monitored and recorded which generated data for the behaviour specialist and other professionals to access.

She had regular appointments with her GP and psychiatrist and her medication was regularly reviewed. Hagar was allocated keyworkers to ensure that her various needs were being met. Hagar took part in a sponsored walk for charity. Hagar participated in community activities such as swimming, going for walks in the park, going to the theatre and going on holiday. Challenging behaviours diminished. Hagar had open access to the kitchen and fridge.

She attended outpatients appointments with her psychiatrist at St Leonard’s hospital rather than having regular ‘interventions’ at her home. She used public transport. Advance recruited and trained a team of staff who can support Hagar effectively. They regularly review and update support plans to ensure that Hagar has a busy and interesting range of activities throughout each day such as, swimming, delivering business cards, going for walks in the park, having massages, going to a sensory session, attending Boccia and eating out regularly.

Hagar has had thorough health checks by her GP and Homerton hospital and input from the physio, speech and language therapist, behaviour specialist, community nurse and occupational therapist as an outcome of her health action plan which is regularly reviewed and updated. She is being supported to use her wheel chair in response to deteriorating mobility partly caused by arthritis around her knee joints.

Hagar goes on holiday twice a year. She does her own shopping including clothes shopping. She regularly eats including having meals at the West End. Her sleeping pattern is much improved. She now often sleeps for 8 hours a night whereas prior to 2006 she struggled to sleep for two or more hours. She is now able to access mainstream primary health care services which means that her health issues are addressed much more effectively. She now uses buses and other forms of public transport without staff bringing fruit or crisps to help divert her attention and behaviour from other passengers.

Hagar has friends in the community. She has been to the Hackney Empire to see an Elvis show Hagar’s staff rarely go off sick and the same staff have been working with her for many years.

After living in her own flat for a number of years in the community, Hagar moved into a flat in a supported living scheme where she has access to a large garden and a staff team on site 24 hours a day.

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