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Jane* is in her late 20s, she has Prader-Willi syndrome and autism, and she is supported by Dimensions. In her early 20s Jane spent a year in an Assessment Treatment Unit (ATU.) During this time food was a massive motivator for Jane, one of the symptoms of Prader-Willi is an excessive appetite and overeating, which can lead to weight gain. When Jane moved into supported living she had gained seven stone in just over a year.

Dimensions began to support Jane in 2018, by this time she had lost five stone of her weight gain. This was done by will power from Jane, a healthy eating plan and the addition of hormone injections every month.  Her support team continued to work with the dietician who had started Jane’s journey to a healthier lifestyle. The dietician worked with Jane to create a four week rolling menu of three nutritious meals and a snack a day: Breakfast, lunch, dinner and supper. Jane chooses her menu with her dietician, so she has control over what she will be eating. Her favourite meals are sea bass, chicken kebabs and chilli. Once a month she has a takeaway, usually ribs, as a treat. Twice a year the menu is changed, this is also Jane’s choice as she doesn’t enjoy change, she likes routine and to know what she will be eating. Jane lost the remaining weight and has now maintained this for almost 2 years.

Alongside the healthy diet the team have encouraged her to try more exercise. Previously Jane didn’t have much energy and couldn’t walk far but following the support of her team, Jane was soon attending four different exercise groups each week, which included activities as diverse as bowling to Zumba, tandem cycling to a climbing wall, bowling to weights and even a bucking bronco. All of which Jane was enjoying, making friends and keeping fit, having control and choice over her food.

Following all these positive steps forward, Jane’s behaviour became less challenging with fewer incidents, meaning that the team could support her to improve her home. For example they hung new curtains; where previously the curtains were attached to the walls by Velcro, they are now on a pole.

Maintaining a lifestyle during lockdown

When lockdown arrived and Jane had to shield, her life changed immediately. The team were concerned about how such a dramatic change would affect Jane as she lost much of the independence she enjoyed. By focusing on what she could still do Jane filled her life with new activities: daily walks and the purchase of a trampoline replaced her exercise groups. Evenings spent with her family continued but on Zoom. She’s acquired new skills learning how to clean and maintain her flat, growing her own food. Becoming healthier has created a love of cooking for Jane. She’s participated in online cooking competitions and talent shows. These gave Jane something to look forward to and soon her days were filled once more. Most importantly for her, she’s maintained her weight and fitness.

Recently Jane became a Quality Checker for Dimensions, helping the organisation recruit and train great colleagues and checking the quality of our support. She’s even acquired her first pet, a hamster, which she is proud of.

Just a few years ago Jane was at risk of life changing ill health, now she’s reduced her risk of diabetes and heart disease and lives a fulfilled, active, employed life. Jane has truly turned her life around.

*Names and images have been changed

Consistency is the key

  • Jane's team all understand the nuances of Prader-Willi syndrome
  • Jane can tell you on any day what she will be eating.
  • The team never use the terms diet or exercise, instead Jane is eating healthily and being active.
  • And, aware of the power of role modelling, her support worker will try to eat the same lunch and join in with her activities.