ECL Sensory Support Service helps deafblind mother of two regain her independence

Mother of two, Caroline is originally from South London. She grew up in Basildon but has lived in Clacton-on-Sea for the last 16 years. An avid Millwall supporter, Caroline has a keen interest in tattoos and enjoys baking, Marvel films, reading and walking.

Caroline’s hearing loss occurred following 15 surgeries after having glue ear, mastoiditis and cholesteatoma as a child. Despite all of the operations, she unfortunately lost her hearing aged 34. In 2018 she had a cochlear implant on her right side but was unable to have the implant in her left ear because of the damage to her ear canal.

Five years later, aged 39, she was also diagnosed with idiopathic intracranial hypertension - a rare neurological condition that causes pressure around the brain. This pressure resulted in a swelling of the optic nerves causing Caroline to completely lose the sight in her left eye and have no peripheral vision in her right eye.

Caroline said: “If the pressure in my head becomes too much I can lose my vision entirely. This has happened most recently, a couple of months ago for five days. Last year it happened twice; for nine and 18 days. When it happens I have to go into hospital and have lumbar punctures to reduce the pressure in my head.”

Caroline uses a combination of her cochlear implant and lip reading to understand people speaking. And has recently been supported by ECL’S Sensory Service which has provided her with specialist equipment, rehabilitation assistance, and access to additional services to help her live more independently.

The ECL Sensory team worked closely with Caroline, identifying what equipment and support would best help her at home as well as enable her to get out and about without assistance.

ECL Technical Officer for Deaf and Deafblind People, Carly Waters assessed what equipment she needed to assist her at home and provided equipment like a loud doorbell, a wrist watch pager and a bed shaker to alert her when her alarm clock and smoke alarm go off. ECL Rehabilitation Worker, Gill Jones supported Caroline with regaining her independence, providing cane training to enable Caroline to go out on her own without having to rely on her eldest daughter to be her guide. And Jason Martin, ECL Sensory Trusted Assessor set her up with the Hospital Guide Service so that she had access to help attending her hospital appointments.

Caroline said: “The alarm clock and bed shaker are brilliant and I rely on them every day so that my family can get up when we need to and I can get my son Freddie ready for school.

“Before I started my cane training I couldn’t imagine having a cane. Now I can’t imagine my life without it! I call it ‘Candy’ because of her red stripes and I never go out without her.

“I was apprehensive about having one at first. I didn’t want the attention I thought it would bring. When we started the training I felt anxious and tense. But the more we did the more I relaxed and got used to it. I realised that when you are out people don’t really notice you and it made me aware of how much the cane would help me.

“Before my cane training I hardly ever went out. I certainly never went out by myself. Going shopping would cause me to have anxiety attacks. I had to rely on my children to assist me which had an impact on both of them.

“I now go out independently. I go for local walks, go to our local shop, go into Clacton on the bus to wander round and meet friends. I really didn’t think that I’d be able to get on the bus by myself, but I can and it has made such a difference for me! It even gives me confidence to just have the cane folded up on my lap when I’m on the bus.

“My daughter Maddie came and observed one of our sessions. It was lovely because she was so proud of me. It helped her a lot because it showed her that she doesn’t have to worry about me when I go out. I can tell Maddie now ‘I’m going out and I’ll be back in time for Freddie coming back from school.’ Maddie then has the day to herself.

“The cane has helped me both physically and emotionally. Because I can now hold my head up, I can use the bit of vision I’ve got to look where I’m going rather than down at the ground so my posture has improved. I’m walking so much that I’ve already lost half a stone and I’m delighted. When I’m out walking I’m thinking ‘hey look I’m out with my cane!’ I’m getting out, I’m getting fresh air and sunshine, I’m losing weight and I feel really good."

Gill also made adjustments around Caroline’s home to help make life easier, such as organising for a handrails to be installed, putting tactile markers on the degree settings of the oven, and helping her adjust how she does things when peeling and chopping when cooking to make it safer.

In addition, she made Caroline aware of Deafblind Manual, a way of communication using touch only. Words and sentences are spelt onto the hand using individual letter signs. These are based on the British Sign Language (BSL) fingerspelling alphabet. Caroline and Maddie have since learnt Deafblind Manual to in readiness for if Caroline’s vision goes completely again in the future.

Caroline went on to say: “I wouldn’t have been able to achieve this without Gill’s guidance. She has trained me, steered me in the right direction, given me advice. I call her my pocket rocket because she’s tiny, full of energy and zest and just gets on with things. Don’t mess with Gill, she gets things done!”

Commenting on Caroline’s progress Gill said: “It has been fantastic to watch Caroline increase in confidence in her mobility over the months we have been working together. She has regained independent mobility thanks to her motivation, determination and dedication to the task. Her confidence in her mobility is just brilliant to see.”

Deafblindness is a combination of sight and hearing loss that affects a person's ability to communicate, access information and get around.