The Ear Foundation is an NGO: Impact of deafness for adults is under recognised: Each year we... And at work...

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1 Adult implantation : quality of life? Sue Archbold, PhD Euro CI Users Antwerp, April 215 The Ear Foundation is an NGO: Family programme Education programme Sound Advice Research Each year we... reach 1,5 families directly reach 3,5 professional delegates per year directly- many more via our Virtual conferences and on-line learning... reach 2, adults at our Sound Advice services see 15 children and their families at our Sound Advice services complete 5 research projects, publishing peer- reviewed papers and using to influence policy and practice.. have over 1million hits on our website from every continent... Impact of deafness for adults is under recognised: I wouldn t go out there was no point you lose total self-esteem, you don t want to mix, anything like that because that s what deafness does to you. I had a problem with psychologically accepting that I was going deaf. Obviously it s not cancer or heart disease but it s a different sort of disability which can leave you feeling isolated and if you feel isolated you it can lead to depression. And at work... The HR manager would simply say I don t know if you are up to this job anymore. You can t hear what people are saying to you, how can you do your job? I am going to have you assessed if you are fit to do your job. That was actually quite frightening. I was possibly going so deaf that I wouldn t be able to work properly. Why is this still the case in 215? When we have the technology? Hearing loss a growing issue World Health Organisation predicts that by 23 adult onset hearing loss will be in the top 1 disease burdens in high and middle income countries Affects over ten million in the UK. By 231 predicted to be 14.5 million people with hearing loss in UK We have increasing aging population working for longer 41% over 5 have a hearing loss.. Communication even more important 1

2 In We have amazing hearing and communication technologies.. So is all well? No... In the UK it takes 1 years for adults to seek help for hearing loss Only 5% of people who go to their GP, family doctor, about hearing loss are referred to audiology About 3% of hearing aids are in the drawer... Only 7% of those who could benefit have a ci. This bit is scary to politicians and clinicians We know there are major issues Growing financial demands on health care services Growing demands for accountability Growing expensive technological healthcare options In increasingly fragile financial systems What about hearing loss? Direct costs of hearing loss? In the UK the direct costs of managing hearing loss are 45 millions... BUT...What about the indirect costs... What about the costs of NOT managing hearing loss? Unlike other disabilities, deafness impacts on a wide range of other domains..the direct health costs are a minor percentage of the costs of managing hearing loss Hearing loss.. 83% with hearing loss have an additional long-term condition: linked with more falls, diabetes, stroke, Linked with mental health older people with hearing loss two and a half times more likely to experience depression. Association with cognitive decline. Evidence for increased mortality.. Evidence of potential savings.. 2% of those of working age with severe impairment unemployed, but seeking work and further 1% cannot seek work due to health condition. (compared with 6%) Action on Hearing Loss report..significant savings if hearing loss managed in dementia patients.. 28M: Cost-effectiveness of adult hearing screening proven Patients spontaneously comment on the costs.. I was seeing a doctor for years, who was treating me for depression, and I dont have that problem anymore, and I was dangerously depressed. Not a little bit down, or a little bit SAD...DANGEROUSLY depressed. Depressed all the time. The cost of that, the benefits I was claiming that are no longer necessary- it s cheap at half the price! 2

3 From Andrew Dunlop, GP... You have a middle-aged person,(who has lost their hearing) you have someone who has years of experience, has skills that could contribute to society, you have someone who can contribute tax and in so many other ways, and the single cost of a cochlear implant bears no relation to the dramatic quality of life and improvement that the individual will have, and the ability to contribute again as a worthwhile citizen in society. I have paid for my implant within two years, I like to think that I have given the NHS back what they gave me, but I know that ultimately the alternative was that I would have been a burden to the NHS if the worst scenarios had happened to me, and I would never have contributed again in fact in terms of paying taxes. To look at it as a single monetary measure is incredibly short sighted... The REAL cost of Adult Hearing loss O Neill... British Household Population Survey... Lost income... 4billion Additional GP costs 76 million Reduced quality of life billion.. Economic costs to UK is 3 billion We need to change the narrative... What are the costs to society of NOT addressing hearing loss? Do we know? Virtual Conference on Real Cost Starts 27 th March... 3 months.. Our recommendations... A National hearing screening programme for adults Increased education of the public, particularly GPs, family doctors, about hearing loss Funders of health care should consider the costs of NOT providing hearing management A review of the current guidelines for adult cochlear implantation A clear funding process Urgent publication of Action Plan on Hearing loss... UK initiatives... Action group for Adult cochlear implantation (thanks to Cochlear and to AoHL) To improve access to implantation for adults To improve information... Including audiological services, GP, commissioners.. To share research initiatives.. To change our guidelines.. Bringing together professional groups and Third Sector groups.. Our two reports available from Third on the way... Belgium experience on its way This is the REAL problem of hearing loss Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted. Einstein.. The impact of hearing loss is under recognised... Except by those who experience it... 3

4 Quality of life survey, thanks to Euro CI users Group 552 responses 15 countries Average age males 311 females 46 students 21 employed 175 retired 29 other Demographics 19 born deaf 291 deaf as adults 234 progressive hearing loss Average age at implantation 42.7 years Oldest 85 years of age Two ears? 85 had two implants 174 also wore hearing aid I used to (wear ha) but became profoundly deaf in both ears overnight, after progressive hearing loss. Cis best option for both ears... I find the aid in the unimplanted side a great help with music. no money for a second implant... Be good... Means of funding source of funding source of funding Do you wear your device All the time Some of the time using the device A little not at all using the device Where is it helpful no help a little helpful very helpful school college university work 4

5 Don t like to wear... swimming... in piscina e a letto Noisy surroundings Large groups Bar,restaurant In wind... In bed... Problem in hospital Where is it helpful I ve been a great help in business and on a social level. I love him. i am unemployed but in my daily time very useful. Im feeling so much different with the CI than without it. Because I can hear again and the tinnitus is more less. I was a teacher so to hear the children and school bells again was quite dramatic...but the school staff could not accept someone with such a disability. More independent now. Quality of life saver... How helpful in communication? not at all a little well very well Can you use the telephone? 196 with people they know 186 with everyone 117 can t use the phone But only simple words. Problems with accents. disappointing... Need help met hulp van ringleiding. Only mobile,... Not landline even a job phone interview... Can people understand you? What do you like to do in your spare time? 377: 115: 5 : 2: people understand me all the time people understand me most of the time people understood me only a little people can t understand me at all I love swimming with my kids... Cochlear aqua accessory is great! Whole range... TV, walking, gardening, clubs Can now do pub quizzes again... Dancing... Windmills working... 5

6 What about music? Music. And singing hear the tune and words know the tune hear the rhythm do not listen to music of course it is easier to hear the words in Finnish but I am quite good with English too... pleasure now to be able to listen to music am unable most of the time to get a tune or the words... I really miss my music... i was brought up in a non-musical tonedeaf hearing family! Overall satisfaction Improvements? very satisfied satisfied neutral not satisfied better battery life time... fully implantable to hear at night... Smaller size... Better recharging... Better with wet... Changeable inner part Waterproof Better music Better in noise Better in a group Regular upgrades and service I'd LOVE if they create new process for those people who have an old implant like myself. I am getting annoyed to see my friends whom had an implant recently, are wearing upgraded process whereas I can't because of the implant. (P156) I feel like I am not important anymore as I used to, because I only had my CI check up every 2/3 years and always gave me an excuse why I can't have a new process and I am getting worried about my implant, as seeing I have it for almost 23 years - hope I won't get replaced or anything like that, how I suppose know if my hearing levels (With CI) is still good or getting worse these days without me realising because I am so used to the sound.(p97) If it fails, then a replacement to be sorted quickly Continued check ups to check it is working at its optimum (P11) Regular updates of technology More explanation about the possibilities. Today we have to find out ourselves what possibilities there are like bluetooth etc. etc. (P93) A good software up date with the improved sound quality and especially in noise. (P22) Support on how to use the various gadgets to improve listening in various places. (P166) Annual opportunity to meet up with experts to have hands-on sessions to try out technology and have support to ensure making best use of the technology I have. (P124 6

7 Gold standard... Much more longer lasting on one battery, at least one week! % water(diving) and dustproof. Standard delivery with Roger microphone and/or smartlink. All CI's with built in bluetooth AND T-Coil is a must! (P16) The societal impact of hearing loss.. I cannot put a price on it... You cannot put a price on hearing... But we have to. We CAN put a price on the cost of hearing loss to society And look at the costs of NOT managing hearing loss... Together with reducing the costs of managing hearing loss well...doing things differently...? To make even greater gains in quality of life More than ears,...we listen with our... 7