Specialist Assessor Training well received

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The partnership between SCIE and SCENE Enterprises CIC continues to thrive. Using our Hi-VisUK OCN Level 3 Specialist Deafblind Assessor course, participants have the option of an open course in London or closed courses exclusively for organisations and delivered on their site.  Workforce leads in the adult care sector from across the country continue to show interest in this unique course. Feedback has been extremely positive and further courses are being promoted via SCIEs website.

Celebrating Older People

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October 1st is Older People’s Day in England. Hi-VisUK will be organising its unique friendly “Talk and TryTM” sessions in care settings. The aim is to support the Full of Life principle by talking with elderly residents who whilst not recognised as deafblind, are found to have problems with both senses. At our sessions they can learn about aids and support that can help them continue with activities and interests.

Typically around 20 elderly residents will enjoy tea and cakes and the chance to talk with Hi-VisUK staff. They will try a range of low cost, easy to see and use equipment that help with daily tasks. For example, equipment to help safely pour a hot drink reducing the risk of scalding; a reading guide to make reading a newspaper, a book or a letter more easy; high colour contrast non-slip mats to aid food preparation in the kitchen, and big print magazines and TV guides.

For residents whose hearing has deteriorated significantly, our staff find a quiet corner during the “talk and try” sessions for one-to-one conversations and to make the most of any residual hearing.

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).

Dorothy’s story

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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.”

Deafblind Voices

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Key to making a difference is how well we listen. It is all about how well we learn: learning how to improve support for older people who acquire deafblindness as a result of living longer lives.

At the heart of our mission is the knowledge that too few people know anything about the condition, including most professionals, and far too many older people become significantly socially isolated soon after the condition develops that can lead to health and wellbeing problems.

“I don’t answer the door as such, only by appointment. I am worried now about letting strangers in – your anxiety is heightened when you lose your sight and hearing. I am anxious about using ATMs in case someone is watching me. I have become a recluse frightened to go out alone for health and safety reasons. I have become very depressed.” A deafblind man who lost his sight and hearing suddenly.

Key to bridging the gap is our idea that older people are ideally placed to support their deafblind peers as volunteer buddies. But only if they are trained and qualified to the extent that they are confident and know how to support an older deafblind person. And when their own sight and hearing starts to deteriorate they will be better placed to cope themselves.

“You have made me aware that deafblindness could happen to me, or my husband too. So the more people know about the condition then the more people there will be who can help us…The connection with ageing made me realise deafblindness is not “their problem”, it’s “our problem” due to the growing numbers of people who are living much longer lives…but you haven’t made me worry anymore about getting older, it has helped me to think more carefully about the future.” A volunteer after receiving our training.

Our project is interested in what an older person who is deafblind has to say about how they are supported and what their experience is before and after they are paired with one of our trained volunteers. Equally we need to hear from our new volunteers as they experience the training and then support an older deafblind person.

“When I heard more I thought it (our work) is a good thing because you need help like this when you lose your sight and your hearing. The most important thing is the people support, the personal support. This is more important to me than any other type of support.” A deafblind person thinking about what it might mean to have a trained HiVisUK volunteer.

“If I was newly assessed and there had been a HiVisUK then, that would be wonderful – my life would come back. It would mean I am enjoying life. It would help my wife.” A deafblind person thinking about what it would have meant if there had been something like HiVisUK when his deafblindness first developed.


Rob’s Story

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Rob has been volunteering for over 20 years. His first volunteering role was as a youth and community volunteer in North Somerset. After volunteering to work with troubled young people in North Somerset, Rob then volunteered for the Manic Depression Fellowship (now Bipolar UK), and Mencap Gateway. Since moving to Northumberland he has continued volunteering. This includes being a telephone befriender with a local Blind Association’s Sight Line, a befriender with their Social Eyes group, plus numerous church and community groups.

Rob developed Retinitis Pigmentosa as a young boy and is now totally blind. He undertook our deafblind awareness training and feels the training has certainly raised his awareness of deafblindness.

“Some of our groups include people with both sight and hearing difficulties. I am now more aware of the deafness aspects than before. For example, we used the training to help us find a more suitable venue for one of our groups. Some members were finding it difficult to take part when there is background noise.  We found a pub with good natural light, which helps some of the group to see our faces better, and where the music is really discreet so we can hear each other better. It’s the practical tips from your training that have really helped.”

“One of the things I really enjoy about volunteering, even when it is telephone or internet based, is sharing good stories. With the training, if I am asked to buddy a deafblind person I will now be more confident and at least we will be able to have a good conversation using deafblind communication.”