Jessie Macaulay is one of many people in Essex affected by visual impairment. Jessie is sharing her story to shine a light on the life changing support available to young people affected by sight loss.
Diagnosed as a type 1 diabetic at the age of seven, 26-year old Jessie now has some issues with her kidneys, she has lost the sight in her left eye and has significant sight loss in her right eye. She was referred to ECL Sensory Services in January 2021 as an urgent case by her RNIB Eye Care Liaison Officer at Whipps Cross Hospital. Jessie is an independent and, by her own admission, stubborn young woman, and was reluctant to accept help.
In February 2020 her sight loss significantly worsened and over the course of that year she began to find it harder to manage. It was affecting both her physical and mental health and at the insistence of her mum, she agreed to meet with Sara Poole, ECL Sensory Service Rehabilitation Worker.
Jessie says: “My mum used to make me go to diabetic support groups and counselling as a teenager and I hated it. I didn’t want to be different. When my sight went and I was offered help, it took me back to being 14 and being made to attend groups and counselling sessions. I don’t like being made to feel that I’m different or being singled out. At the time I was referred to ECL, I was in a bad way and my mum eventually persuaded me to let Sara help. I agreed, but I was resistant and didn’t expect it to help me at all! However, once I was introduced to Sara Poole, my ECL Rehabilitation Worker, my opinion changed.
“Sara initially called me to talk me through what her job role was and what she could offer me. After that first call I reluctantly agreed to a meeting, and she came to see me at my flat. I instantly felt a trusting connection with her, she made me feel safe. I told her that I wasn’t going to do anything ‘textbook’ and that I wanted help to live my life in the way I wanted to. I said I wouldn’t do anything that was embarrassing or that made me stand out as ‘different’ - I was adamant that I would not use a cane! Sara took it all in her stride and gave me techniques and tools to live my life in a way that suits me. I feel more positive about the future now. What she has taught me has meant that I can go about my daily life as safely as possible without feeling I am being labelled as ‘different’, which is great.”
Jessie went from not wanting to accept rehabilitation support to not wanting the service to come to an end! ECL visual impairment rehabilitation support is person centred and not time limited, with an overall average of 6 visits per person. Sara continued to support Jessie for 15 months and still checks on her today as she knows that Jessie is loath to use other support services.
She goes on to say: “Sara went above and beyond to help me. She went through literally everything I do in my day to day life and provided tools and techniques to make sure I can still do it all. Everything from walking, making food, shopping, looking at ways to get information, and how to manage my bills, to introducing gadgets like a screen reader and setting me up with an iPad so I could connect on social media. She was also someone I felt comfortable talking to, she felt like she was a friend as well as a professional helping me.
“I’m really appreciative as I know I wasn’t meant to have Sara for as long as I did, but as she was so helpful, and we had such a good connection I really didn’t want the service to end. She is a complete asset to the sensory team, and I would really recommend her for younger customers as she’s easy to connect with. She really empathised with how I felt and understood my perspective as a young woman who was struggling to accept that my vision was not like that of the other 26-year-olds I knew. She was totally respectful of the fact that I didn’t want to feel or look different and was prepared to help me feel more confident and comfortable with my new way of life.
“To anyone in a similar situation to me I’d say, rehabilitation support is great so take the help even if you might not want to - it might surprise you! Be honest with your rehab support worker, tell them how you want to do things and how you want to manage your situation. They will work with you to provide you with ways to live your life, on your terms.”
ECL’s Sensory Services support people who have a sight loss, hearing loss or combined sight and hearing loss, helping them to maintain independence and dignity in every aspect of daily life. The dedicated team of sensory specialists deliver services across Essex and beyond. They work in partnership with local and national organisations to ensure early intervention and helping to maximise independence for people living with sensory impairments. Several of ECLs Sensory team are living with a sensory impairment themselves and can provide lived experience-based support that is tailored to the needs of each individual.
Essex Sensory Community’s Essex Sensory Awareness Week is an opportunity for everyone to consider the challenges of everyday life for people living with a sensory impairment.
The Essex Sensory Community (ESC) is an informal partnership of seven local and national organisations delivering services on behalf of Essex County Council. Partners include:
- Deafblind UK
- ECL Sensory Service
- Essex Blind Charity
- Hearing Help Essex
- Support 4 Sight
For more information about ECL Sensory Services or to access support, call 03330 133 262, send a text message to 07921 397 547, email SensoryServices@essexcares.org or visit ecl.org/services/sensory-service
For further information about ESC visit www.ecl.org/services/sensory-service/essex-sensory-community-partners