Helping Lynn feel safe, independent and in control at Home

ECL's West Sussex Community Reablement Team helps mother living with Ehlers Danlos Syndrome (EDS) feel safe, confident and in control at home.

Lynn is a 40-year old mum living with Ehlers‑Danlos Syndrome (EDS), a complex hereditary condition that affects connective tissue. This causes joint hypermobility, frequent dislocations, poor balance, chronic pain, fatigue and reduced dexterity. Lynn also lives with lumbar spondylosis and dyslexia, which further affect her mobility, sleep, medication management and confidence.

Some days Lynn could manage quite well. Other days, stiffness and weakness meant she struggled to walk safely, wash, dress, prepare food or complete everyday household tasks. She was at high risk of falls and was experiencing anxiety and acute stress, particularly around how to manage daily life while protecting her children from becoming carers.

Lynn wanted support that would:

  • Help her feel safe in her own home.
  • Rebuild her independence.
  • Establish a clear daily routine.
  • Protect her role as a parent.

She was referred into ECL’s West Sussex Reablement Service for a short term home care package focused on independence. Lynn received 6 hours of care per week for 3 weeks consisting of two, 1 hour care visits per day, morning and evening on Tuesdays, Wednesdays and Thursdays.

Morning care focused on:

  • Safe washing and dressing using supportive equipment.
  • Preparing meals, including lunch for later in the day.
  • Supervising mobility and household tasks.

Evening care focused on:

  • Supporting safe movement around the home.
  • Prompting and supervising household tasks.
  • Supporting evening meal preparation.

Working with Lynn, not taking over

ECL’s reablement ethos is empowering people to live their lives – not doing things for them. A key part of Lynn’s support was listening to her. She understood her own condition well and was clear about what mattered to her. Her ECL carers took the time to learn about EDS, how Lynn’s body worked, and what helped her feel safe.

ECL’s Trusted Assessor worked with Lynn and an Occupational Therapist to identify and arrange suitable equipment to help her live more independently at home.

This included:

  • A banister to allow Lynn to safely use the stairs.
  • A kitchen trolley to move items without carrying.
  • A raised toilet seat to support dressing and transfers.
  • Shower equipment including a bath board, bath step and grab rail.
  • A One Touch kettle to safely prepare hot drinks.
  • Referrals for a walker, pill dispenser and further specialist support.

I am so impressed by all of the staff and the research they did into my condition. The equipment has been life changing, but even more important was the knowledge they shared on how to stay safe.

Lynn, ECL West Sussex Reablement Customer

Care Goals and Outcomes

Lynn and her ECL team agreed 6 clear goals at the start of the package and achieved them all within the 3-week timeframe. The goals were:

  1. Managing continence independently - achieved by week two, restoring privacy and dignity.
  2. Safer mobility and transfers - with new equipment and staff guidance, Lynn went from crawling on the stairs to walking up and down them independently. By the second review, she felt confident and safe using all her equipment.
  3. Washing independently - with the right shower equipment and support building confidence, Lynn returned to her safe baseline. Some tasks continued with partner support where needed, reducing risk.
  4. Dressing independently - the raised toilet seat made a significant difference, allowing Lynn to dress her lower body safely and independently.
  5. Making hot drinks independently - the One Touch kettle allowed Lynn to safely prepare drinks again – a huge boost to confidence and independence.
  6. Completing domestic tasks - using the kitchen trolley and banister, Lynn became more independent with daily household tasks, with family support only where genuinely needed.

Sarah one of Lynn’s ECL Care Assistants said: “Our aim was to support Lynn to re‑establish a daily routine during a very difficult period in her life. During our time with her she began eating regularly again and feeling more confident at home. She’s done really well in such a short space of time. She says that now she feels like herself again and not just a ‘patient’ which is wonderful to hear.”

Lynn added: “It’s been an absolutely fantastic experience. Every carer brought different ideas; all focused on helping me be as independent as possible. I would recommend this service to anyone.”

She was so pleased with the care that Lynn even recommended ECL reablement to another family while attending a hospital appointment, describing her experience as ‘life‑changing.’

While Lynn does not describe herself as fully independent, she finished her care package having met all of her independence goals feeling safer, stronger and more confident, with the right equipment, knowledge and routines to manage day‑to‑day life on her own terms.

Lynn’s story shows how the right support, at the right time, can make a lasting difference

Find out more about ELC short term home care