Hartlepool Borough Council is a key partner with Hi-VisUK in the development of a new pioneering co-production model for identification and support of older people living with dual sensory loss.
Hi-VisUK will continue the investment by our sister project, In Good Hands, to build the capacity of Sunderland and North Durham Royal Society for the Blind to become a dual sensory service for their members and local older people in Sunderland and north County Durham.
Their volunteers and staff are being supported with training in deafblind awareness and how to use our identification tool. This will enable them to identify older people with the condition and provide appropriate support.
Older people identified as having a dual sensory loss will be supported by the Society’s volunteers and where appropriate by HiVisUK staff to ensure they get the appropriate response from other local service providers.
This is one of our unique capacity building models that Hi-VisUK will promote across the country.
Hi-VisUK will continue to support World Health Day in the coming years. Last year our sister project, In Good Hands, attended World Mental Health Day celebrations in Hartlepool. This is part of our ongoing development of strategic and practical links in the borough as part of a planned Hi-VisUK & Hartlepool Borough Council (HBC) collaboration.
Hi-VisUK will be taking on the baton from our sister project In Good Hands to Make Every Contact Help in the health services arena. This provides a great opportunity to strengthen Hi-VisUK links with a wide range of health and wellbeing stakeholders, everyone from local authority meals services to community fire safety services.
To be successful at Hi-VisUK we will constantly work to raise our profile at a local and regional level (as well as nationally). Opportunity to talk with other local disability organisations, national manufacturers and suppliers of aids and equipment is one part of a complex jigsaw of supporting organisations – who all need to know more about age acquired deafblindness. It is also an opportunity to meet older people with deafblindness who visited such events as photographed above.
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.
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).
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.
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.”
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.
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