Mary’s Story
At 75, Mary had always lived independently. Living in her dormer bungalow where she and her late husband, Arthur, had raised her three children, she felt a deep connection to the home and life the family had built together. Living in her home brought her comfort, safety, and it was here Mary found peace, surrounded by reminders of a life well-lived.
However, Mary’s world suddenly changed when she suffered a stroke. Mary was rushed to hospital, and it was there for the next few months, Mary stayed. While she made remarkable progress in her rehabilitation, regaining much of her strength and mobility, there were growing concerns among the doctors, nurses, and social care team about her ability to return home alone. They worried about her safety, given her age and the impact of the stroke on her cognitive functions.
Despite Mary’s strong desire to return to her beloved home, the healthcare team felt it was safer for her to be placed in a residential care home, where she could receive round-the-clock support. Mary was devastated. The care home, though filled with nice staff and other residents, was not her home. It lacked the warmth of her own space and the familiar surroundings and constant reminders of her family. Most importantly, it lacked the freedom she had always valued.
Under the Deprivation of Liberty Safeguards (DoLS), Mary was placed in the care home for 12 months. Despite the intentions behind this decision, Mary was unhappy and felt her voice was unheard. She knew what she wanted to go home but it seemed like no one was listening. Days turned into weeks, and Mary’s unhappiness grew. The care home became a constant reminder of what she had lost.
Determined to regain control of her life, Mary sought the help of an advocate, someone who could ensure her rights were upheld and her voice was heard. A Paid Relevant Person’s Representative (RPR), met with Mary and explained how advocacy support could help and support her views to be heard. The RPR listened to Mary, validated her feelings, and ensured her views about returning home would be listened to.
With the RPR’s support, a reassessment of Mary’s care needs and mental capacity was initiated. The reassessment revealed that while Mary occasionally struggled to retain information regarding the decisions about where she wanted to live, she was still capable of expressing her wishes clearly. Mary wanted to go home and was willing to accept a care package that would provide her with the necessary support to live safely and independently.
During a Best-Interests Meeting, Mary’s voice was finally heard. Her strong desire to return home, coupled with the support she would receive from the care package, convinced the team that she could indeed live at home again.
Within two weeks of the meeting, Mary returned to her home, where she was greeted by the familiar sights, smells, and sounds that had filled her with comfort for so many years. Surrounded by the memories of her past and the warmth of her home, Mary found peace and happiness once more, living the life she had always cherished.
William’s Story
William was gentleman in his early fifties who was born and had lived in China until age 26. In 1998, he married and emigrated to England. By 2002, William had a full-time job, a three-bedroom home, and a newborn son. However, later that year, he suffered a brain injury affecting his mobility and communication, limiting his ability to bear weight and verbalize.
After six months in a general hospital, William was transferred to a rehabilitation service for intensive care. During this time, his wife and son ceased all contact, and neither friends nor professionals knew why. Between 2003 and 2018, William experienced multiple care placements but remained unhappy. In 2018, a Best-Interests Meeting decided that William would benefit from relocating to a care home in the north of England, close to friends and the Chinese community, where he could reconnect with his cultural roots. The move was successful, and William became content, with regular visits from friends. He remains at this care home.
In May 2023, the PRPR (Paid Relevant Person’s Representative) began working with William. Initially, the PRPR noted that William was non-verbal but could respond through nodding or shaking his head to simple English commands. However, recognizing that William’s receptive communication was stronger than his expressive abilities, the PRPR questioned the effectiveness of the current communication support, which involved a Mandarin interpreter. The managing authority confirmed that despite months of attempts, the interpreter had not been successful in aiding William’s communication, so the support had been discontinued.
The PRPR consulted with the SaLT (Speech and Language Therapy) Team, questioning whether visual aids might be more effective for William, given his cognitive impairments. The PRPR suggested that visual tools like pictures and symbols could empower William to make everyday choices about food, clothing, and activities. An attempt to use the Talking Mats communication system was made, but it proved too ambiguous for William, who likely needed more literal and specific images.
The SaLT team then agreed to assess the suitability of visual aids for William’s communication.
Six weeks later, during a follow-up visit, the PRPR learned that the visual aid communication system had been successfully implemented. William was now making choices about his food and drink, indicating a significant improvement in his ability to express himself. Staff used visual aids to offer William choices, which allowed him to communicate his preferences more clearly. The PRPR was pleased with this outcome and noted that the focus would now expand to include choices about places to visit, clothing, and interactions with people. The aim was also to explore William’s views on his placement at the care home and his future aspirations.
The PRPR’s approach ensured clear communication with the managing authority and Speech and Language Therapy team, highlighting the advocacy role and intentions. By advocating for alternative communication methods tailored to William’s needs, the PRPR demonstrated a person-centered approach. The successful implementation of visual aids empowered William, giving him the tools to make his voice heard and ensuring his continued support.
Anna’s Story
Anna was a lady aged in her early seventies and had moved to a care home when she was forty-five, following the sad and untimely passing of her mother. Anna’s mother was her sole carer, and apart from spending four days a year at a respite care home, Anna had always lived with and known nothing but the care and support from her mother. Although Anna was born in England, her mother was Russian, and within the family home, a blend of English and Russian was used to communicate.
At seventy-two, Anna began displaying aggressive behavior during morning routines. Her GP suggested a blood test, but Anna, lacking mental capacity, was referred to an IMCA for support. The GP overlooked Anna’s phobia of needles and medical environments and did not initially consult specialists.
An IMCA visited Anna to best gather her views, using easy read information, visual aids, pictures and symbols to communicate. Anna’s response was to point to the symbol that displayed ‘PAIN’. However, Anna picked up and threw the symbol on a needle and syringe.
Following the IMCA’s findings and recommendations, a learning disability nurse and occupational therapist assessed Anna, revealing severe arthritis as the cause of her pain and aggression. Pain relief medication was prescribed, leading to a marked improvement in her behavior.
Further invasive treatments like X-rays and blood tests were considered but ultimately deemed disproportionate. Concerns included potential damage to Anna’s trust in the care staff and her fear of medical procedures. Instead, a care plan was established to manage her arthritis and monitor her health with regular visits from healthcare professionals. Anna’s condition has since stabilized.
Advocacy Assured 