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“Game-changer” for sight loss?

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There have been several reports in the press and media about a significant breakthrough regarding stem cells in the treatment of age related macular degeneration (AMD). AMD is the single biggest form of sight loss in older people affecting over 600,000 people in the UK and is the most prevalent eye condition associated with acquired deafblindness.

The promise this treatment offers is beyond calculation in terms of the benefits to older people with regard to quality of life and mental wellbeing. And the positive impact it will have on their confidence to stay mobile, communicate and access information.

Click this link for an article on the: BBC News website. Or search most of the national dailies and science and health journals websites for more information. Stem cell work has recently been described as a game changer for people with Multiple Sclerosis (click here). The same can surely be said for people with AMD.

Hi-VisUK in Cornwall

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Since January this year Hi-VisUk has been in Cornwall working with the local authority on the specialist adult deafblindness aspects of the Care Act. This includes our unique training and qualifications for staff to increase an authority’s capacity to meet their duties regarding deafblind adults. Part of a three-year contract secured by Hi-VisUK, this will see us training hundreds of staff across the county.

This builds on our groundbreaking work in Hartlepool with the local authority and local providers.  It also complements our work ongoing with Bradford council’s sensory support services. Our work with all local authorities across England continues to grow alongside and partly through our partnership with the Social Care Institute for Excellence (SCIE) with whom we jointly arrange open-course social-care training on age related deafblindness and the Care Act.

Care Act compliant training: Hi-VisUK & SCIE

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Our aim is to build capacity of others to support older people with acquired dual sensory loss. A key element of this is the provision of our unique accredited training.

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.

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.

 

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.”