Over a number of years in my fifties, I found I was avoiding some social situations more and more. It wasn’t that I was deaf exactly. I could hear, but people had stopped making much sense if there was any background noise. Understanding dialogue in T.V and films was a bit hit or miss and certain sounds like the pips on Radio 4 had me reaching rapidly for the radio off switch because the sound actually hurt. Interestingly, I didn’t consider that anything could be done for me, but when I saw a poster in a local optician that mentioned Tinnitus and free hearing test, I booked an appointment.
According to the NHS Tinnitus is a ringing or buzzing in the ear, which is a very mild description of a condition that can drive a person utterly bonkers with sounds that range from hissing, beeping ,roaring and my own personal 3 a.m. nightmare , a kind of electrical hum.
Well, my hearing test revealed hearing loss severe enough in my left ear to be in need of a hearing aid immediately , and one that was recommended for my right ear, which was not quite so bad. I was told that using the aids would also help to alleviate the tinnitus. Unfortunately the price tag for two basic aids started at over £2000.
I muddled on without either for about another eighteen months finding most social situations with background noise, any high ceilinged room and so many cafes and pubs were no longer a pleasure to visit. If I had to go out I developed the standard smiling and nodding technique adopted by so many people who are hard of hearing and I just crossed my fingers, hoping I wasn’t agreeing to something I would later regret. I also, largely stopped listening to most music, as some notes actually hurt.
Eventually someone suggested an NHS hearing test and I was seen, quite to my surprise within 6 months and given first one hearing aid and within another few months, the second.
The experience wasn’t difficult really, but the hearing aids did not give me everything I had hoped for and I found myself still avoiding many social situations. When a friend who attends lip-reading classes suggested joining a focus group, I jumped at the chance to hear some of the experiences of other peoples and to find out what I could do that might help me.
The group was gathered together by Paul Chappell, the Engagement Project Manager for Action on Hearing Loss Cymru. Their website states that 575 5000 people have some form of hearing loss in Wales alone. That’s as much as the populations of Cardiff and Swansea combined, one in six of us, and we come in all ages and from all backgrounds.
Action on Hearing Loss Cymru, works across Wales to support people who are deaf, or who have hearing loss or tinnitus. They offer information, specialist equipment, online training skills and hearing aid repairs. They also campaign for equal access to employment, health, entertainment and other services.
Paul began our hearing focus session with an explanation that his charity were looking at what gaps there were and what services were needed in West Wales .We began by sharing our experiences of first noticing our hearing loss and how long it took us to get help.
For some of the group accessing services took as long as 5 years , while some of the 9 of us were seen quite quickly. NHS targets are 3 months for initial testing. A retesting appointment often takes at least a year to be accomplished.
A number of the group reported that their first visits to G.P resulted in being told that they had no hearing issues and one person commented that she had been told she didn’t need help because she “..didn’t look deaf’. Another person was told at a training event, when she explained that she couldn’t hear that, “….this is as loud as it gets.”
Most of us expressed living in dread of misplacing, or losing hearing aids because aside from the cost of lost or damaged equipment ( Items are only ever on loan from the NHS) the time taken to get the replacement will generally become a time of isolation. Spares are never an option and one isn’t even allowed to keep the old aid when an upgrade is done.
People complained that it is easy to feel that one had been written off and we discussed some of the difficult situations we had encountered, often with professionals who ought to have known better. There was much praise among the group for those people who understand that shouting is not helpful, that it’s important to face people when talking to them, and it’s wonderful to encounter people who take time to appreciate how lonely and demoralising hearing loss can be.
We talked about what deafness meant to us, from not being able to hear at all, to the levels of sound that can disappear meaning noise is there but clarity is missing. Tinnitus can be overwhelming for some and some sounds can be extremely painful.
Call centres were a general problem with people who work in them not usually understanding the need to speak slowly and clearly into good quality equipment.
There was also the issue that hearing loss can come at any age but is generally and mistakenly associated with older people and is often associated with low intelligence. People felt that they were often spoken down to or ignored if people knew they were deaf.
We talked about visual clues that help in communication. Being able to see someone when we are talking makes life so much easier. The group was largely made up of people who attend a lip-reading group where they have found great support and friendship. They expressed a need for more of these groups and stated that they should be subsidised and therefore accessible to everyone who needs them.
Other issues included constantly changing materials used for moulds without consideration as to how the aid actually looks or feels. Some raised the point that glasses are now considered an accessory and come in a huge range of styles, but with hearing aids it’s a question of take it or leave it.
People also expressed the desire to maintain their independence and clean and change their own tubes instead of having to wait for it to be done for them. Batteries are another issue and it was discussed that they could be made available at mobile libraries, or pharmacies, or even post offices.
A need for quiet spaces in public places was also raised so that people who are hard of hearing can be assured that they can access a place where they can receive information without distracting noise and activity.
Mobile loops were discussed next and although they can make a huge difference for deaf people , the group complained that they were often seen as a luxury in public buildings and were sometimes poorly maintained.
The group praised the Sensory Team with social services in Pembrokeshire for their positive advice and support and the Fire Brigade for their advice on smoke alarms for the deaf.
The loan of equipment which gives people a chance to try out things like phones was considered a really boon when available, as equipment is expensive and buying something that doesn’t suit, costly. Action on Hearing Loss have a section on their website with advice on this called ‘Live well with hearing loss’
Asked if we would consider what would be the best way of spending a hypothetical million pounds on matters to do with hearing loss, the group had a number of thoughts. Firstly the need for ways to reduce echo in many public buildings , particularly those with high ceilinged rooms, was seen as a great positive. The echo is a huge problem and means many of us with hearing challenges feel excluded and isolated.
The issue of the availability of eye tests which opticians are paid to carry out was raised next. It’s not the same with hearing tests. The group declared the unfairness of this and would like to see everyone having the option of a hearing test and for re testing at regular intervals as with eye tests.
Education was also considered, so that hearing people have an understanding of what it really means to be deaf or hard of hearing. The group discussed the stigma associated with deafness and the isolation and loneliness that can arise when one has challenges around hearing. Someone mentioned that some theatres operate a system whereby disabled people may attend performances and a carer go free. It would seem that deafness is not a disability included in the scheme and the question was raised as to why that might be. Perhaps an assumption that deaf people do not enjoy theatre or cinema?
As our session drew to a close Samantha Dowler , Deaf Community Support Officer of the Sign and Share Club stayed behind to answer some of my questions about her work in Pembrokeshire.
While we chatted, she carefully overhauled my hearing aids and explained how to get the best use of them. What a bonus and what a difference that made to my ability to hear!
I asked her to tell me about Sign and Share.
“ We were set up by volunteers in 2013, she told me, and have now been awarded funding by the Big Lottery. I have been in post since May of this year”
What do Sign and Share do?
“ Our aim is to reduce isolation and relieve the needs of deaf people. We support and advise on hearing aids, equipment and communication. We have set up 3 social clubs so far in Fishguard, Johnston and Pembroke.”
What happens at the social groups?
“We have days out, meals, and craft sessions. We learn and practice signing, and support each other. We also replace tubes and batteries and repair aids. We liaise with audiology at the hospital. We also advise on equipment and have some items available for hire. It’s early days for us, we have been working hard to forge links with local organisations and establish the clubs and we are planning to launch monthly drop in sessions. Part of my role is to raise awareness and we have plans to expand to cover the whole of Pembrokeshire over the next five years. We want to know what people need so we can provide the best possible service. If social groups aren’t for you or you can’t get out we also offer a home visiting service ”
How can people get in touch with you?
“ We are on Facebook as ‘Sign and Share Club’ You can also reach me on 07378 611181 .
Our website is www.signandshare.org.uk.”
Groups meet at Llain Las , Plas Y Fron, Fishguard SA65 9LZ at 2.30pm on the second Wednesday of the month.
And Croft Court, The Green, Pembroke, SA71 4NZ on the 3rd Thursday of the month at 2 p.m.
The Sign and Share Club meet on the first Friday of the month at various locations, please check the website or contact Sam for more details.
Action for Hearing can be contacted at :
0808 808 0123
0808 808 9000