Newly Diagnosed?
Struggling to know what support is available to you?
We are here to help...
Receiving a new diagnosis can be overwhelming and knowing what to do next might seem daunting. Whether you are newly diagnosed, have been living with deafblindness for some time, or a family member we at Deafblind Scotland are here to support you every step of the way. Our mission is to empower deafblind individuals by providing the information, resources, and communication that you may need to live a full and independent life.
You can use the contents below to navigate to specific sections which may be useful:
Diagnosis and Professionals You May Meet
Understanding your diagnosis is the first step toward finding the right support. Deafblindness can take many forms, and each person’s experience is unique. Whether you were born with sight and/or hearing loss or developed it later in life, it's important to know that support is available.
Throughout your journey, you may encounter various professionals dedicated to supporting your needs. These could include:
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Specialist Support Workers: Trained professionals who can assist with communication, mobility, and accessing services.
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Guide/Communicators are highly skilled professionals. They relay information, facilitate communication with others and ensure safe mobility.
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Occupational Therapists: Experts who can help you adapt your environment and daily tasks to maintain independence.
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Rehabilitation Workers: Professionals who teach skills for safe and independent travel, whether using a cane, or other mobility aids.
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Audiologists and Ophthalmologists: Medical professionals who monitor and manage your hearing and vision needs.
These professionals are here to help you gain confidence, provide information and help you achieve your personal goals.
What You Are Entitled to Once Diagnosed
Once diagnosed, you may be entitled to various forms of support, including financial assistance, mobility aids, and specialised services. For more detailed information on your rights and entitlements, please visit our Welfare Rights Page.
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Benefits including Adult Disability Payment, Attendance Allowance and more. Click here for more information from our Welfare Rights Team.
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Blue Badge: If you have significant mobility issues, you may qualify for a Blue Badge, which allows for parking in accessible spaces. Learn more about the Blue Badge scheme here.
What I Wish I’d Known at Diagnosis
Often, the best experts you’ll ever meet are other people who are on the same journey. Here, our members share some of the things they’ve learned and experienced since diagnosis:
"I wish I’d known that the journey wasn’t going to be as quick or as bleak as I first thought. When I was diagnosed, I was told I’d be totally blind by 40, but no one explained the different outcomes people can have. Finding the right specialists and connecting with Deafblind Scotland made all the difference-it helped me realise that everyone’s path is unique." John.
"I’ve learned that you don’t have to face this alone. The support of family, friends, and other people living with deafblindness is so important. It’s okay to ask for help, and finding the right resources early on can change how you manage day-to-day challenges." Colin.
Colin's Journey with His Guide Dog
Colin, who has Usher Syndrome shares his experience with the process of getting a guide dog, emphasising the transformative impact it had on his life.
"I started training and found myself suddenly excited about life again and the prospect of self-sufficient freedom. I relished every moment with my dog and still do now. I love being a guide dog owner—it’s magical. I was unemployed for the first time in my life and had nothing to do except work with my dog. So I decided to do nothing at all except hone my skills working with this fabulous dog. Jason quite literally changed my outlook on life—we met so many new friends with many inspirational stories. Why did I wait so long to talk to these people? These are my people, who tackle problems daily but always find a way."
Rogan shares the experience of his late wife Emily acquiring deafblindness...
Sight and Hearing loss is more common than you think: Let’s talk about it.
Deafness moved in slowly, imperceptibly. At sea in the evenings we listened to music and news, short wave interference giving Emily no problems: “my brain corrects the sound and I hear what the music should be”. Over some four to five years my musician wife complained increasingly of off-tune instruments and singers, finally abandoning the Proms she enjoyed so much. People “mumbled their words”. Over time music was replaced by her other hobbies-reading, embroidery and letter writing to her worldwide contacts. Home on leave after eight years, her piano, cello and violin sounded off tune . Her piano tuner-a friend and a brave man-suggested the fault might be in her hearing. Followed tests and a diagnosis of “profoundly deaf”.
Blindness was sudden and struck over a weekend. On Sunday, she could not read the papers. On Monday, the diagnosis was “partially sighted," on Tuesday “blind” and on Wednesday she Registered blind and contacted Deafblind Scotland.
Our lives changed forever.
In a difficult and emotional time, Deafblind Scotland gave us the support and encouragement we needed to adapt.
I morphed into a carer.
Amongst many other things, Emily set herself the task of navigating the shopping streets of Glasgow without assistance using memory, with her mobile ready in case of emergency. In the car, her map reading was replaced by a satellite navigator. The voice was “Jane”. Emily did not like Jane, calling her “that woman," complaining that “there is another woman in this car”.
I knew Emily for almost sixty years, learning to trust her judgement, admiring her adaptability and capacity for hard work. She faced the potentially catastrophic change in her life with typical courage and determination for over twenty years, leading a full life.
Late Onset Deafblindness with the correct support is not the end of life. It just feels that way at first.
Rogan is a retired Shipmaster and Naval Reserve Officer and has been associated with Deafblind Scotland since 2001. In 2012 Rogan was appointed as a Director alongside his wife Emily.
Top Tips
Our members and experts have compiled practical Top Tips to help you understand and manage your daily life living with deafblindness.
One thing often agreed on is the importance of touch for deafblind people, in helping to navigate, receive information, and communicate with others.
To the right is a video of Andrew one of our members who shares his personal top tips, and how his sense of touch is a key factor in making this happen.
To read more top tips, from gardening to cooking to online accessibility, please visit our Top Tips page here.
Who to reach out to
Navigating a new diagnosis can be challenging, but you are not alone. We encourage you to reach out to others who can provide support, including:
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Deafblind Scotland: Our team is here to offer advice, support, and information. You can contact us at 0141 777 6111 or info@dbscotland.org.uk. You can also become a member of Deafblind Scotland to access various activities and events, to find out more information please visit our Membership page here.
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Your Local Sensory Impairment Social Work Team
These organisations can provide information about local services and entitlements specific to your area.
For more potential organisations please visit our Useful Links page here.
Get in touch
As Scotland’s sole organisation dedicated to supporting and advocating for deafblind people, we understand the journey you are on. Whether you need advice, support, or just someone to talk to, we are here for you.
For personalised support, please contact us at 0141 777 6111 or at info@dbscotland.org.uk. We are here to answer your questions and support you.
We hope this webpage will serve as a helpful resource as you navigate your diagnosis and find the support you need. Remember, you are not alone—Deafblind Scotland is here to help you every step of the way.