Sarah, who is in her fifties, has complex needs, including learning disabilities, anorexia, non-verbal communication, depression, anxiety and a history of self-harm. Affinity Trust has supported Sarah, who lives with two other people we support, since 2012.
When Sarah came to Affinity Trust, says Operations Manager Anmol Athwal, “She had a complex relationship with food and had a fluid-only diet”. Sarah was often anxious but music helped calm her.
Two years ago, Sarah was admitted into hospital and an end-of-life process put into place. The hospital staff thought she would die.
But Affinity Trust staff made the case for Sarah to have a PEG tube* inserted, arguing that this was in her best interests. Hospital staff thought she was likely to pull it out, but eventually they agreed. Our staff explained the procedure to Sarah, and that she would not have to eat through her mouth or drink fluid.
Since Sarah has had her PEG tube fitted, says Anmol, Sarah “has a better relationship with food. This is not the Sarah the professionals once knew, who looked gaunt”.
I feel very positive about Sarah’s environment – Sarah’s mother Jill
Two years on, Sarah has put on weight. She now takes part in a wide range of activities – including swimming, aromatherapy, shopping, going to the pub, and visiting her local cinema and theatre. She can answer her own front door, and opens her own gate. She chooses her own clothes, does household chores, and allows her teeth to be brushed twice a day.
In the cinema, despite not being able to eat, she enjoys the smell of popcorn and hot chocolate. Similarly, she loves to stop outside the bakery to savour the smell of coffee and cake.
Anmol puts these changes down to Affinity Trust’s person-centred approach, where restrictions are a last resort. She says: “If you work with the person supported, the outcome will be better.
“Since November 2015 Sarah seems to be happy, calm and content, and has built good relationships with supporting staff.”
Anmol adds: “Sarah’s mother is extremely positive about the support. She can’t believe how much better Sarah looks and the lifestyle Sarah leads now, she thought was never possible”.
*A PEG tube is used with people who have swallowing problems or who are unable to take enough food or fluid to meet their nutritional requirements. The tube itself is passed into a person’s stomach through the abdominal wall.