The most vital step

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Hi-VisUK is a highly ambitious charity that, amongst other aims, is working to increase the number of older people with dual sensory loss or deafblindness requesting and receiving a specialist deafblind assessment. This is no easy task and yet it is the most vital step.

Trying to reach older people with age acquired deafblindness is a significant challenge despite the numbers. The vast majority of older people likely to have this devastating condition, those aged 50 years and above, do not see themselves as deafblind. Department of Health (DH) describes this in its Care Act policy guidance (2014) when it acknowledges “many people do not define themselves as either deafblind or having dual sensory loss.”

There are several issues and challenges in recognising deafblindness in older people. For example there are older people receiving social service care who are not identified as deafblind. DH explains: “this could be because an assessment was carried out when only one sense was affected or because both senses have deteriorated since the care package (including residential care) has started.” Other impairments including those that are often associated with ageing “may mask the deafblindness.”

This presents a nationwide picture where age-acquired deafblindness really is a Cinderella condition. This despite it currently affecting an estimated 600,000 older people. Government estimates 40/100,000 people have the condition in this country but this is likely to be closer to 572/100,000 according to one research report (Emerson, E, SENSE 2010). By 2035 the numbers of older people with deafblindness are set to rise by 60% within main population trends as people live longer lives (CeDR 2010, ONS 2012).

I didn’t know there was so much I could do!

Our training courses seem to be plugging a large gap in awareness of deafblindness in older people, “I didn’t realise there were so many tools I could use”.  Participants are finding the mix of theory and practical makes the learning highly accessible “Extremely informative, full of useful scenarios”.

The confidence gained in our training is showing through feedback from participants: “I have learnt a lot and I will go out and show as many as I can what I have learnt”‘ “I feel that if a deafblind visitor came into our centre I would be more confident in approaching them for the first time than I have been because of practising the block alphabet”.

“I will use this tomorrow with my Grandad!”


Our highly practical Deafblind courses give participants a uniquely rounded understanding of the role and the skills required when guiding a deafblind person. After our training, not only can you say what a communicator guide is but you can do it too! The day builds on our deafblindness awareness foundation course that participants need to do before they can enrol onto this course.

Participants particularly enjoy the challenge of guiding and of being guided blindfold or wearing sight-loss simulation glasses! Navigating around a room, up and down stairs, in and out of doors, sitting at a dinner table and getting into a car – such a lot to learn you may think but the feedback says: “Enjoyed it all day!” “Very good”, “I can use all I have learned straight away”, “The training I had getting a deafblind person into a car I will use tomorrow with my Grandad who is deafblind”.

Creating awareness

Our Foundation course in deafblindeness awareness is proving to be really popular with a wide range of people. Particpants come from a broad range of organisations in the community, including care service providers from private, public and voluntary sectors.

Feedback is positive: “I enjoyed the whole course”, “I found it all very interesting”, I enjoyed learning about the obstacles a deafblind person faces in every day life”, “Am looking forward to your other training”, “Gained knowledge and guidance around different types of deafblindness”, Comprehensive outline of deafblindness that I feel I can put in to action at work and in my own life tomorrow”, “Lots of learning styles catered for!”,

Training for Real Change

21 sensory support and adult social care workers/managers/support workers attended our level 3 qualification Specialist Deafblind Assessor course.

Feedback has been very positive. Again, professionals said they cherished the opportunity to learn abut deafblindness together so they can take this back to their teams, and to “get to know how deafblind support is shaped across the region”.

HiVisUK sees enabling professionals to work together like this across the country as one of the keys to making real change for older people.

“I enjoyed both days. It really made me think of the affects of deafblindeness”. “It gave me a clear understanding of the Care Act 2014”. Many commented on how surprised they were at the prevalence of age acquired deafblindness in the older population; and how much the numbers will grow due to people living longer.


Training the professionals

We recently delivered training to social workers, care workers, and managers from six local authorities. Participants were taking part in our unique Specialist Deafblind Assessor Level 3 training. Feedback has been really positive.

Many have commented on how useful it was to be able to share their new learning journey with peers from different authorities. This is one of our project aims – to bring key stakeholders together for real and lasting change in the north east region.

Others said it had given them “a sense of confidence in working with deafblind people”.

An all-too-familiar story

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Colin, one of our deaf-blind friends lives about half a mile from his local town centre. There are roadworks throughout the town causing congestion and a large build up of traffic at most times of the day. Colin has just started using his white long cane and has made this journey lots of times before. He described a recent experience.

“I was working in to town as usual and went to cross the road via my usual crossing. I pressed the button and waited… nothing happened. Pressed it again, same result. I did not know at the time but the crossing system had been switched off as it interfered with the roadworks traffic controls and a black bag had been placed over the lights. After waiting for some time, I tried to cross the road by waving my cane in front of me but was unable to do so due to heavy traffic and motorists failing to let me cross.”

“Fortunately a good Samaritan came to my aid. A woman, I never found out who she was, standing on the opposite side of the road saw my dilemna. She marched out in to middle of the road, held out her arms and stopped the traffic.”

This highlights just one of the problems that our friends encounter on a day to day basis and highlights the need for greater awareness all round. It also underlines the need for more trained deafblind aware volunteers to support people like our friend Colin.

Jackson’s Story

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Jackson Musyoka was born in Kenya from the Kamba peoples. Jackson attended our volunteer training programme in Morpeth. He told us why he became interested in volunteering to support deafblind people:

“I first became aware of these problems when I was a boy at home in Mbitini village in Kenya. I remember I was about 9 years old. There was a 40 year old deaf man who also had not learnt how to speak who had no one to help him. My family decided to look after him. He had some gestures he used and I quickly learnt them and we became good friends. My family saw that we could communicate with each other very well and used to ask me to interpret for them. With the support of my family he was able to get work on the farms around our village. We had lots of laughs together as I could understand his gestures and his lip patterns. Now I volunteer with a deafblind man in Northumberland and I want to know more.”

Dorothy’s story


Dorothy works for a local charity providing rehabilitation support, she visits elderly and visually impaired people in their homes to assess their needs.

Dorothy found our deafblind awareness and guiding training: “Amazing! Some of the simulation exercises were challenging but opened my eyes. It was staggering. I already use the training to help me improve my visits.”

“During my visits I am more aware of the signs of potential hearing loss. For example I recently visited a very independent minded, severely visually impaired man. Whereas before the training I would perhaps not have taken his hearing loss into account, as we have been focused on the visual impairment aspect, now I am in a better position to look at both sides. I think my visits following the Silver Dreams, IGH training are better. We are seeing more of our visually impaired clients have a hearing loss and so the learning we have achieved on the deafness side is especially useful and practical.”

“Since the training I have learnt not to make assumptions about how to approach or support a deafblind person. My lipreading skills have improved and I am more aware of how I am communicating.”

Brian’s story

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Brian took early retirement a couple of years ago. Volunteering for Brian provides him with something to do that is stimulating, but above all else, means he can “help others make the most of their lives.” At the local association where he volunteers Brian drives the minibus for the activities group and sits on their funding committee. Brian heard about our training:

“I was interested partly because I was intrigued about the situation facing a deafblind adult. I then did your training in deafblind awareness and guiding which opened my eyes.”

“You seldom come across disability. Like many people I thought being blind meant having no sight at all, being deaf meant you could not hear anything. What grabbed my attention was the wide range of abilities that visually impaired people have despite their condition. What has been so rewarding has been the way people respond to your help. Doing this work makes you realise how many barriers there are for blind, deaf, and perhaps even more for deafblind people.”

“The training has broadened my mind and made me reflect on the things that could cause issues or make communication more difficult. I have learnt not to assume and that every blind, deaf, deafblind person is the same.”