For several years we have enjoyed an excellent working relationship with the City of Bradford Metropolitan District Council through its Sensory Needs Service. Our collaboration continues to go from strength to strength. It all started with their team manager, Julie Ralph and her colleague Margaret Hird sampling our training which at the time was through our In Good Hands project. Bradford then commissioned us to deliver training to their teams on site including to some of their colleagues from neighbouring local authorities.

Recently two very exciting developments are taking shape. We both agree on the vital importance of local authorities being deafblind aware across a broad range departments and services, not just sensory services. But these are lean times with budget cuts severely limiting the ambitions of nearly every local authority in the land.

So to spread the training throughout Bradford City Council, we trained and mentored some of their sensory team who have now started to deliver our courses on their site. This work is done under a licence with us and all resources remain our copyright. We observe and monitor quality. Secondly we have been supporting them with their own first deafblindness e-learning course to further spread the awareness training across the Council.

Great to see ongoing positive feedback from our training participants. We learn a lot from our courses through our interactions with participants who come from a wide cross-section of the health care and social care fields.

Colleagues from the fields of sensory loss support and acquired communications disorders are always generous in their sharing of experience and expertise whilst on our courses – thanks to all!

Click HERE to watch the latest video feedback, courtesy of our partners at SCIE.

Our OCN Level 2 course in Acquired Communications Disorders continues to show no signs of a decrease in interest. Care providers tell us there is nothing like this training anywhere else and that it is filling a huge gap in their understanding, confidence and skills – especially when combined with our highly practical and concise Hi-VisUK deafblindness training.

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.

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.